FISTULA SUPPORT ONLINE
Helping you to cope with the pain of fistulas

About Fistula Support Online

Fistula Support Online is a New Zealand based website that offers advice, information and personal experiences for those suffering with fistulas. Here you can share your stories, ask questions and offer support to other sufferers. Living with fistulas is very hard and can sometimes be embarrassing and difficult to talk about. This website is an open forum and a source of information to make dealing with fistulas just that bit easier, and to make the sufferer feel less alone with the problem.

Please note that we do approve all comments on this website before they go live, to protect you all from spam etc. So if your comment does not show up immediately, please don’t worry, we approve comments daily. Cheers!

859 Responses to “About Fistula Support Online”

  1. Thanks for this site.

    • No problem Roxie, thank you for reading and leaving comments, it really helps everyone else with fistulas! :)

    • Dear I am Nishant from India?Had my fistulectomy peformed 6 weeks ago which failed as the surgeon reached till anal spintcher and stopped.He removed the affected area till spintcher but couldnt reach futher as it would require cutting spintcher muscles.the infection remained inside.But then after 4 days,I visited the Ayurveda clinic and underwent Kshar sutra method and now after 6 weeks i am 90 percent healed.Pls try this method rather than repeated surgeries.

      • What is that method? I have never heard of it.

      • Hey Julie,Kshar Sutra is an ayurvedic method in which a specially prepared thread is tied to the fistula tunnel.The thread does simultaneous cutting,healing of the fistula tunnel and generates new tissues at the same time.The thread is replaced every week with a new thread and this goes for two months.After that the tunnel heals,the thread is removed and remaning part is allowed to be healed naturally.Once the tunnel heals there is no discharge.I had normally surgery also but it generally fails as normally fistulas are well formed till the anal canal and the surgeons cant cut the anal spintcher muscles as it leads to incontinience.

      • Thanks for the explanation! Sounds interesting and hopeful.

      • @nishant – I am currently suffering from fistula in ano and was thinking of the ayurveda treatment. How long is the treatment? And is it painful everytime you have to change the thread?

      • Hi nishant can u pls mail me the address of aurvedic hospital where u got treatment for fistula.pls mention name of the doctor. My email is- manishmanus@ yahoo.com.we will be thankful if u provide us this information at the earliest. Thanks

      • Hi nishant, it will be really greatful if u can help us/me from this disease by providing me the information from where your surgery had been done…please reply me

      • Hi nisant where did u have this ayurvedic surgery…my husband suffering badly..doctors advised for lift procedure but don’t know abt success rates not over than70 percent . Can u pls give the details ….thanks awaiting yr reply
        My email I’d is aartish14344@gmail.com

      • hi nishant
        can you let me know the plc whr you did the ayurvedic treatment

      • hi nishant,

        is the kshar sutra silimar to the cutting seton method?

        http://en.wikipedia.org/wiki/Seton_stitch

      • how much rest is required after kshar sutra

      • hi nishanth,
        i hv been suffering frm fistula frm pas 3yrs. got 2 surgeries done but didnt work. firsttime my doctr removed just d abcess and second time after surgery it was nt heeling, wen again diagnosed it was said dat der some other track which was nt done during d surgery. it really painful nw doctr wants me to undergo another surgery. its been 3yrs i am nt able to do anything in life. it seems life has stopped fr me. plz mail me d details of the hospital wer u got the ayurvedic treatment done and suggest me wat should i do

      • I’m suffering from anal fistula from last 6-7 month. I consult to the doctor and he suggest me to operate this.
        Is there any other procedure like medication or any ointment which can heal it without operation. Please suggest me as soon as possible .

    • Hi My name is Ivan see a lot of people asking about this fistula I Ben suffering with it for 12 years and got worst oft the past 4 years I had lots of surgeries and hyperbaric treatments that closed it but when i stop going week later it blow open and got worse pain levels is true the Ruffe .

    • hi i recently had a fistula surgery it was about 2 almost 3 months ago but i still have such heavy discharge is that normal? i do now see some pink blood in it but still alot of the icky green, is this normal or should i be worried? doctor visits said she cant tell and she just has me keep coming in and last time i went she almost killed me with some cream to dry and help dry it out (literally almost killed me after the pain came a death allergic reaction was rushed to ER after i fainted and went into convulsions) so i been trying to let it dry out on its own now but am worried it may need to go for more surgery, really nothing online tells me if this constant fluid is normal or how long it normal takes to heal.

      • It’s normal because you’re full of inflammation. You have to let it do it’s thing by draining.

      • It’s not the seton, it’s my second surgery the flap, my doctor sai I should be drying up by now at least a little, fluids should not be increasing and she went to try some gel to help dry me, and it ended up in me passing out body turning blue and red with bumps on every crevis, and having convulsions while they tried medicating me in the er, and after that day it is now about two weeks and it is not risen like a pimple and oozing more then it ever had before and it’s no longer a smooth fluid it’s more of a chunk and now dark red blood is coming, and where the incursion site was by my sphincter it is very puffy and if I push on it green oozes from the hole on te side

  2. hi i had anal fistula for over a year, i didn’t have any pain but was discharging. i had surgery 4 days ago and inserted seton but the doctor said it will come of it self. did it happened to anyone yet?

    • Hi Meg, I hope the procedure you have done in April works for you , the seton i have in place is in a complete loop , thro the anus thro the buttock so it cant come out, however i deed have one simply placed into the fistular, this could easily have fell out, remember to take some painkiller before your op to relax you, best of luck, by the way one of my Doctors at the local practise is off to Perth with his wife and 4 children, Lucky people, Paddy

      • Hi, what a great site.. I’m in the uk and I had my ‘lay open’ op on fistula 3 weeks ago 16th April! My fistula was due to a botched haemariodectomy that I’d had done 2 years ago which left me suffering with abssesses every 2 weeks and shed loads of antibiotics! That op had to be one of the most painful times of my life and I’ve had 2 kids! The pain was due to excruciating bowel movements. So for this op I was well prepared with boxes of Laxido ( Stool softeners)! My surgeon instructed that after fistula op I was to have my wound packed daily by district nurses! I had a different nurse most days and each one had ‘their’ way of treating it , some like to pack whilst others don’t. Long story short one nurse said that after just 3 days it was almost healed to surface so didn’t pack it, but the pain inside was still really bad. I have been paranoid with keeping it clean too so I have had umpteen shower’s, and baths, a day. A really great help is that I was prescribed ‘Irriclens’ a sodium chloride aerosol solution..a godsend..specially when caught short out and about!!! After 10 days I was then referred to practice nurse who examined me and she actually used a probe to measure my wound and the ‘tracking’ was still an inch long and still discharging, as she said the surgeon had instructed it to be packed and they should follow HIS instructions! Other surgeons have different instructions for ‘packing’ some ‘do and some ‘don’t’ So…I have been going to the practice nurse daily for the past week and have to go next week too., not sure beyond that yet but already it feels better!

      • Well fingers are crossed my fistual will calm down. Last Thursday I had a seton placed going from anal glads to the area between the rectom/vaginal . My crs said I have a T fistual with a small area to the vaginal side but she could not find the full track. So she did not put the seton fully fom the rectom to vagina. Now it’s just a waiting game. If things stay decrease pain and the area on the vagina side stays calm then ill be able to start a family with the seton in place….so fingers are crossed I am not up for another major surgury.

      • Rachel– you said if things stay calm you’ll be able to start a family ‘ with the seton in place ‘ ..does that mean you were told you could have a natural birth with a fistula (seton in)? I’m hoping to start a family soon too but worried doctors will tell me I won’t be able to have a natural birth : /

      • Jendel they said as long as they are pretty sure I will not need another surgury (anasithia) then they will support my desion to become pregnant and should have no problems carrying to full term. However for the delivery it would have to be a c-section. However even if the flap surgury had worked both my obgyn and crs had said a c-section would be best at this point. Once you have a vaginal/rectal fistural a c-section is best. After having so many surguryies this year a c-section sounds easy :)

      • Hi Rachel, I had several fistula surgeries, and eventually had a successful advancement flap surgery. I then got pregnant and was told by my surgeon that I had to have a c section. I had a c section 11 weeks ago and it was a WALK IN THE PARK compared to fistula surgeries – trust me!! :)

      • Hi Jendel, I wouldn’t even attempt a natural birth, with all the pressure you could risk making your fistula problems so much worse. I was pregnant and told I had to have a c section by my surgeons. I had a c section 11 weeks ago and it was nothing, so easy! :)

      • Hi, all, yes a open wound should always be packed daily, so the area heals from the inside to the surface, this can be painful, any nurse worth his/her salt would know you have to probe everyday, infection can easily take a hold, at the moment my Seton has been in since March !st, its really painful even when i take painkillers, seeing Consultant on June 3rd, if i can wait that long, i must say this time i am finding this pain hard to cope with, so i feel for all you out there in the same situation, i think i might have a double before bed tonight, Regards Paddy.

  3. Has anyone ever had a bowel to bowel fistula, and if so, can you please give me all the information you have by contacting me directly at douglaspjk@yahoo.com.

    Thanks!

  4. Just had surgery for a fistula beginning of May…. My doctor misdiagnosed as a muscle strain. I had never had a fistula before nor had I ever heard of it. All I know is one morning I was awakened by extreme pain, I sat in awkward positions and it literally felt like a heavy weight attached to a string that would bounce inside of me as I walked or exercised. I had no Idea what was wrong, I thought I had a sudden onset of hemorrhoids. I took warm baths to relax and it helped but the pain would return and other strange things started to happen. I had very little control over bowel movements and because of the infection I began to feel very run down…keep in mind this was something that was going on for almost 6 months..until I managed to see a specialist who had me go into the hospital immediately as he feared I may have been suffering from sepsis.
    The surgery was a success however it was the most painful thing I had ever experienced. After surgery I had to have 3 shots of Morphine and 2 percoset just to take the edge off.
    A word of advice, try to avoid the narcotic pain killers if you can. They will make you constipated…trust me you will NOT enjoy a bowel movement with that problem after the surgery.
    Get yourself some prunes (Sunmaid) are very good. Keep your stools soft for at least 2 weeks, avoid laxatives , you want a smooth move. And besides, prunes or prune juice is good for you.
    And a bit of dark humor…. the first time i had a bowel movement which was about 2 days after the surgery….it feel like a breech birth of a porcupine……that was on fire….yup…..ouch.
    Get preparation H medicated wipes or something similar to clean yourself after a bowel movement if you are not able to bathe afterward.
    But do take warm baths (make sure the tub is clean) sit back and relax, put some music on. Its been 18 days since my surgery. Very little drainage, no need for a surgical pad at all, back to working out and riding my motorcycle… energy level is almost 100%. I am feeling good

    best wishes to everyone

    52 yrs old male retired and back to enjoying things again.

    • hi rer…what was the surgery about…a seton treatment or
      a fistulotomy?

    • OMG, the way you described your first bowel movement post operation made me laugh and cringe at the same time…it sounds really painful. I just had my surgery 3 days ago, and so far, I haven’t felt any pain yet…when I found out that I had to undergo fistulectomy, I prepared myself for the surgery. I stopped eating meat 2 weeks before my surgery, and started eating pineapple and green leafy veggies everyday. Right now, I make sure my diet is packed with fiber, and I eat a lot of healthy food, and I only eat fish. Banana, pineapple, pineapple juice and freshly squeezed lemon juice is a staple in my diet. My stool goes down smooth and easy. I’m going to try eating prunes too, thanks for the tip.

  5. My name is Brandy and I’m 37 yrs old.This is my third anal fistula surgery.I’m trying to recover from my surgery I had 5 wks ago.I was cut on both sides and have a senton placed in the middle.Saw my Dr two days ago and said everything looked great.The problem is I’m in sooo much pain on the right side.I wander if my senton could be hurting me.Please help?

    • Normally the seton should not hurt you. It allow the puss to continue to drain. Maybe there is some infection going on again. Does it feel like another infection? If so, see the doc and have him give your more antibiotics. In the mean time make sure that if you have Crohns, you are eating right. You want to eliminate all diarrhea because that would mean more inflammation and may be slowing the healing process. Try the SCDiet if you can that has helped a lot of people and it helped my fistula heal. Good luck and I hope and pray you heal soon.

    • I had a similar problem and had my nurse take a swob sample. It showed I had a really bad infection and the doc gave me the correct antibiotics and ibuprofen. I feel great 2 weeks later

      • Hi Matai, make sure you get a second opinion from a specialist – like a Colorectal Surgeon. The first 3 doctors I went to gave me antibiotics and pain killers as well…. all they do is ‘mask’ the problem, and you’ll feel good again for a couple of weeks…. but if there is a fistula or abscess in there, things can get a lot worse after antibiotics. So please get a second opinion from someone who is an expert in that field.

    • Last year I had a seton put in. I had so much pain there was no inflammation. The seton felt like there was a tree limb stuck up my butt. After a week or two it felt like just a twig and then I didn’t feel it at all. It will pass.

  6. My flap surgery did not heal so now I need to have the fistulomecty surgery. My but really hurts could I have anothet fistula or is the pain from the flap surgery not being healed?

    • Hi Harriet, I’m really sorry to hear your flap surgery didn’t work. The pain is probably the flap not working, it’s probably the same fistula that’s hurting. Are they sending you for an MRI? When are you having your fistulomecty? I hope you’re coping with the pain ok!!

      • Dr just said he was going to do the fistulometry. I am back on Flagyl and Cipro.

  7. I just got diagnosed with a peri rectal fistula and I’m not sure if I want to have surgery because of the risks, and the chances that it can resurface. Can it be harmful to my health if I leave untreated?

    • Leaving anything untreated is harmful to your health. And the sooner you get these things sorted, the easier they are to fix. I didn’t think that not having surgery was an option? It’s up go you, but from what I know, fistulas don’t go away on their own, they cause problems, get infected, can affect the health of your entire body etc etc. Leaving fistulas to ‘fester’ away can be a really bad idea and mean you have a much longer recovery. Depends on how deep your fistula is as well. What surgery options have they given you?? Have they said that you will need a seton placement? Or are they going to lay it open? Good luck! Make sure you ask your surgeon loads of questions and get all the information you need to make the right decision!! :)

    • Hi jessenia,pls search for Kshar sutra ayurvedic treatment on internet and go for it.Surgeries create complications which are never ending.Dont go for any surgery.Just go for kshar sutra as its the only thing that works.

  8. Hi, first off thanks for setting this up!
    I’m currently undergoing treatment (UK) for a fistula in ano and had my first seton inserted one week ago. After the procedure I was asked by the surgeon whether I’d like some info on a clinical trial taking place over here of something called a Fistula Plug – has anyone any experience of this method? It claims to be a much less invasive treatment than the usual cutting seton and advancement flap methods and carries a far lower risk of sphincter damage. The downside is that it’s pretty expensive and, as it’s fairly new, hasn’t had the long term results that these other procedures have chalked up.
    At first I was pretty interested in joining the clinical trial as the thought of possible incontinence from fistula surgery scares the…whatever out of me, but I’ve since been told I would be the first person in my region to meet the requirements for the trial. Now, is that good or bad?

    • Hi Matt… gosh you have a tough decision to make there! I would go and get 2 or 3 more opinions. The plug is a treatment that has been used for a while, there are a few people on this site who have had the plug surgery. I had the flap surgery, which has also been around for a while. You need to get as much information on this as possible before you make a decision – talk to a few different expert surgeons, and ask loads of questions. It’s up to you at the end of the day. Because this is all new to you, and you’ve only had a seton for a week, I really think you need to build up your knowledge of fistulas and the different treatments and surgeries out there, before you decide to do a clinical trial. You say it’s pretty expensive – but surely, if you’re taking part in a trial – they would pay for it??
      Personally, I wouldn’t do it, as I would be worried about messing around with something that isn’t properly researched. The problem with fistula surgery is that, quite often, you only get one shot at it. For example, Flap surgery – they can only do it properly once, they can try it a second time if it fails, but that has an even lower chance of success (20%). So don’t mess around with something you may only get one shot at fixing. I’d be making some appointments with a couple of other expert colorectal surgeons if I were you!! Good luck, and let us know what you decide to do :)

      • That’s great advice and pretty much confirms my own thoughts on this – thanks alot :)

        You’re right about the plug treatment costs being covered by the trial, the point I was trying to make is that as it is expensive it’s not available as an option yet on the NHS over here – which seems a shame to me. The other issue with the trial is that even if I choose to take part there’s no guarantee that I’ll get the plug as it’s supposed to be a random selection. As you suggest – more information is needed, it’s tempting to rush (or be rushed) into a decision after finally getting confirmation of the fistula (I’ve had a recurrent perianal abscess since 2004).
        Thanks again.

      • Update: Just over 3 weeks into my first seton and I’m pretty much pain free apart from the occasional dull, nagging feeling up my bum. The drain seems to be working okay although I noticed fresh blood recently after a busy afternoon catching up on gardening duties. I’m slowly getting back to work (from home) and managing to keep the area clean with wipes and lots of showers. If I’m honest, I’d happily keep the seton in rather than go through fistula surgery.

      • Update Nov 12
        I decided to sign up for the FIAT (Fistula in ano trial) taking place over here and am due for surgery in a couple of weeks. It’s a randomised study and will either be the fistula plug or what they call “surgeons preference” which in my case is likely to be a cutting seton. I certainly never thought I’d be asking Santa for a butt plug for christmas!

        I’ll update again in December for anyone interested.

    • Hi Matt,
      I am undergoing treatment for a fistula too in the UK. Can you share the name of your surgeon? I am looking to get a few advice from a few surgeon before any surgery. Also, hope you are doing better and your seton is working well to take you to recover.

  9. I am Scheduled for a seton or fistula plug surgery for tuesday 8/21/2012, I am very scared! and my main concern is incontinence after surgery. I went through 2 incision and drainage 5 months ago, but it felt like it never really drained completely. The pain never really went away, Im not hurting all the time, about twice a week, and the pain is not as bad as it use to be. What should i expect after surgery?

    • Placement of a Seton was not so bad for me, but isn’t a plug a lot more intrusive? There is a big difference. You should tell your CSR what you want. I think placement of the seton is good because it can give time to heal before invasive surgery. I never had to have surgery because the SCDiet (and lots of prayer) helped me heal. Thank you God! I did not have to go through any serious surgery. What do you want? Can’t you tell the doctor? I also had a silk seton and it was thin. I think is also better than rubber. Ask your CSR.

      • Hi Roxie, it is so good to hear that someone had a fistula that healed without surgery. How long did it take? Did the seton come out on its own after it drained? What is a CSR? a surgeon? I just got diagnosed with Celiac Disease and started the SCDiet and really want to see if that heals my fistula that has been draining for 4 months. Thanks so much. Liz

      • Hi Roxie, how are you? Still healed and healthy? I have just added a new page to this website called – Success Stories. I wonder if you could please write a brief comment on that page about how you’ve healed? I thought we needed to add some positive stories, rather than just all doom and gloom :) Cheers!

  10. Well I just got back from the doctor. I had a seton inserted in April of this year. This was my second visit. I still have green nasty puss coming out of my seton so I was prepared for te doc to tell me that it wasn’t time for the seron to come out yet. What I wasnt expecting was for him to tell me that I need to have another surgery. Disappointed to say the least. I guess when you have one seton having another doesn’t really make a difference. I have crohns as I am sure I’ve told u all before. There r no signs of chrones or irritation of any kind inside my arse. That’s good I guess. Two things have to happen my doc says for the setons to come out. I have to have no chrones signs internally and I have to no signs of infection. Iike puss. I still have that. The doc thinks I have a second fisstula or the fisstula I have has found a second way of draining from my body. Pretty bummed. Trying to stay positive and focus on getting healthy even through this set back. I treated myself to some Yummy Vegan Thai food to cheer me up. Thanks all of u fellow bum sufferers. I’m glad I have u to talk to- Carol.

    • Hello…had a second seton placement on Feb11 2014..thought I was goin in for my follow up care so I could return to work, had been out for 4weeks..all started with an abscess that I thought were hemorrhoids.I’ve been thru 4 surgeries already…would like another alternative like something natural…believing God for healing..hopefully believing this will be last surgery when seton removed

  11. Hi,
    Go in for my first seton ring in september. I have had a complex fistula for about a year now. Doctor says the seton ring will help keep it under control as he does not want to remove it. I here alot of painful stories surrounding these seton rings… I can’t emagine dealing with that daily pain as my fistula does not really cause alot of pain right now. I am getting mine done by freezing of the spine as my doctor says he does not like putting anyone under anasthetic… I am so terrified of getting the needle in my back aswell as being away while they insert this ring. Can anyone tell me what the spinal freezing is like? Has anyone had this surgery without being put under?

  12. Hi all, Going into week 5 post flap surgery. Noticing a bit of discomfort when having a BM. Bit of blood/spotting also which I’m sure is normal but still disconcerting. Slight pain still but nothing too bad… Hmmm. Checkup with CRS on 7th sept will tell me if we have flap success or whether it is back to square one. I can honestly say that I would go through any pain just to be done with all this… I’m sick of wearing pads on my ass… Having to take so much care and plan ahead for the most simple things… Ah well.

    Could be worse I guess…

    Hope you are all ok out there in fistula land.

    M

  13. Hi, this site is a great resource!
    Just curious if anyone has had the LIFT technique and if it was successful?
    I had my LIFT procedure last week for a complex fistula (two tracts – one transphincteric and an intersphicteric horse shoe extension) last week. I have minimal pain, but some drainage.
    I am playing the waiting game to see if the operation worked. I am seeing my CRS next week so fingers crossed – otherwise it is probably back to setons 1 & 2.
    Good luck to everyone in fistula land.

    • Hi. I am three weeks post op from the LIFT procedure and am still experiencing some drainage especially after a BM, along with a lot of soreness. I have my follow up with the CRS in 9 days for the post op visit (I couldn’t get in for the 10-14 day visit due to the holidays). The incision on my bottom is healing well. I’m wondering how you’re doing nearly 4 months post op. When did the drainage end? And the soreness? And did it heal the fistula? Thank you.

    • I was wondering how your were doing after your lift surgery. My son has a complex anal fistula from Crohns. Would love to hear from you.

  14. Hi all . Day one with a non-cutting vessel loop Silastic seton ( copied that off of surgeons email). Like some people here, I knew little to nothing about what this procedure is, how long the seton stays in or what it was supposed to accomplish. Had a rectal abscess drained 4 months ago ( by far the most pain I’ve ever encountered ) Have had constant drainage…little to no pain but had spasms in anus just before BM or passing gas. My surgeon recommended and performed the above procedure with a very vague explanation as to what it was or what to expect. Although I had asked him on several occasions ( the man is brilliant, so his overly intelligent explanations made little sense…but I trusted him…his reputation is impeccable )
    All of your letters have helped me understand what this is all about…I only wish that I had found this site before my procedure.
    Imagine my surprise last night when I had a look down yonder with a mirror and saw what looked like a shoe lace looped through my butt and out the old scar from the abscess drain.
    I can hardly wait for my first BM…sounds like this is going to be a real treat ( sarcasm ). I can thank all of you as to what to expect. Obviously cleanliness is paramount.
    Have an oppointment with him in a month so he can reassess. He has stated ” that if there is any question of the tract being deep in relation to the external sphincter, then MRI or Endorectal ultrasound will be done.” He’ll refer me to a ” Colerectal surgeon for consideration of flap closure of the fistula or a seton plug or the “LIFT” procedeure.”
    From reading previous letters, I’m not so sure what to make of some of these recommendations. Haven’t read anything about the LIFT procedure.
    Hopefully, someone here can enlighten me.
    Thank god for this site and all of you.

  15. hi all,
    i had had fistula operation on 22 may, it been now almost 4 months. presently, i am having constipation problem for more than two weeks although i take diet balance food. when in bowel moment, the first part of stool is quite hard (block) to the rest. the practice becomes habitual action. it is quite painful and the pain continues after bowel moment. my concern is that is it related to fistula ? can anyone share experience please… am really scare for this..
    thanks a lot

    • Hi, have you tried increasing your fiber and any stool softener? Ideally, you don’t want to be pushing. Also if you’re taking any pain medications it will make things worse.

    • I have had success with metamucil fiber with water — it produces soft moist stool, and moves everything along. Maybe try 1/2 dose a day, as you don’t want to add too much bulk. But definitely drink lots of water with it or it will cause the opposite effect.

    • hi jas I had the fistula operation same thing but with mucus traces on the stool, i changed my diet to raw fibres, ate prunes stayed off bulky foods and “wintered it out”, it will get better it just takes a lot of time and yes it is painful, like giving birth to a broken bottle but then considering the sensitivity of the area its no wonder. good luck and drink plenty of water

  16. Hi Everyone,
    I had my 5th or 6th (lost count!) perirectal abscess drained two weeks ago and have a pezzer (mushroom) catheter in for drainage. I’m concerned about the removal of it. Obviously, it is a sensitive area and is very painful. It is my understanding that they don’t numb the area at all. There are no sutures holding it in place and I’ve noticed as the wound heals, the catheter gets pushed out more and more.

    Anyone have experience with this? How painful is it going to be when removed? Last time I had my packing removed (the last abscess) I almost passed out and felt like vomiting all over the pain was so bad. They

  17. Hi, I love this site. Thank you! I went back to colorectal surgeon on Aug 7th for a fistulotomy but when Dr looked he said the flap surgery had healed. I had the flap surgery done in Feb and Dr said after I went back for my checkup it had not healed. So between Feb and Aug it healed. The problem is I still have pain in my butt. It went away for awhile now it has come back. Colorectal surgeon wanted my gastro Dr. to put me on remicade. Gastro Dr is reluctant because he is not sure if I have Crohns or not. Results from colonoscopy and sigmoidoscopy not conclusive. I am afraid to take Remicaid if I don’t need it. My arthritis Dr. said I have Crohns arthritis. I just want this butt pain to heal. I don’t have any drainage. Just pain, but the pain is not bad like when I had the abcess. Does anyone have any pain like this after having flap surgery. This is going on 7 months now.

  18. I should also mention I had a seton put in last year in July. Kept that in until flap surgery in Feb. Also seton hurt at first for a couple weeks but I think that’s because your body had to get use to it. After awhile I didn’t feel it. Just a trip when you have a BM because you can’t just wipe like you did before. Otherwise no problem.

  19. i would like to say having fistulas make life difficult for some.i had a perianal abcess in 2010 that burst causing necrosis,sepsis and 2 fistulas.i was lucky to survive,but the end result been a loop illeostomy and seton drain that hav been in since this all happened hasnt been great.i hav to go under anesthetic every 10 weeks to hav perianal wound scraped and drains cleaned out as i still get discharge.it has affected my life greatly but im a positive person and try to do as much as i can.my heart goes out to anyone who has fistulas,beleive me i know what your going through.

  20. Hi everyone, I’m so glad ive found this site and reading that there is others going through the same as me. End of may this year I developed a perianal abscess after 6 days of antibiotics and tremendous pain I ended up in eau and had my 1st incision and drainage. If only it was successful. The pain when I woke up from the anesthetic was unbearable( I’ve had 2 children too) I had morphine injections then morphine drip that I could press when the pain got really bad again. I went home the day after and was bed ridden for 3 days, I was constipated for 5 days and my 1st bm as u can imagine wasn’t pleasant or pain free. From then on I was in pain everyday taking strong pain killers that made me very spacey, which is not good being a mum of 10 month and 3 yr old. So another 2 weeks went on and still no better I ended up back in hospital and had a 2nd op this time I was told after waking up that the abscess had devolved into a fistula and that they had placed a seton in to help it heal and to help it drain. Again I was in a lot of pain afterwards but had hope that this would be the start of it healing.
    But how wrong was I, after 5 weeks of pain and constant pain killers and changing dressing 2/3 time a day my colorectal specialist said he needed to operate again (3rd op in 3 months) they made incision in same place and drained it again and also widened the seton they said this would help it drain better. It’s now been 6 weeks I saw my specialist yesterday and he is not happy as I am not either, I still have to change dressing 2 times a day and still have pain daily. He said I have another access and that the only way it can drain is through the fistula tract. I have another operation this Monday so 4 ops since beginning of June. I just wish this would all be over I’m beginning to give up any hope that it will ever heal. I am going to ask if it can be laid open, I know there is risk of damaging spinzter muscle but surely that would know by now whether my fistula is near that muscle. I think I need to ask lots of questions? Should I push for something else to be done other then another incision and drainage and keeping a seton in place??
    Thanks

    • I forgot to say I’m 26 years old, if this makes a difference to any procedures i could have done? Am awaiting biopsy results for chrons disease. MRI scan hasn’t been looked at by my specialist yet (3 weeks ago I had it) Once again really glad to come across this site and to read everybody else’s post I don’t know anyone that has this or has had this problem before, so this site is really helpful and gives me a little hope that I will be fistula free one day, it’s really dragging me down now :(

  21. Hi, I’ve been living with this fistula nightmare for approximately 2 years now. I’m 28,married and from Cape Town South Africa. I’m a chef by trade but my career’s been totally finished with this disease. Any physical activity causes me to have excruciating pain. I’ve had 4 surgeries in the last 2 years ranging from draining the abscess to the placing of setons. LET ME TELL YOU THIS: THERE’S NO ONE DOCTOR that can help you if you have a high perennial anal fistula as myself. I’m no doctor but the general feel I get from all the specialists whom have treated/examined me is that they’ll try this or try that and then “we take it from there”. Now I’m not one to be easily swayed but I believed them. Foolishly nothing changed, I’ve lost my job (due to many days off and general inability to be as quick and efficient as I used to in the kitchen), I now live with my parents again and my wife is going to leave me soon. And you might be thinking this guy’s exaggerating but I’ve tried every remedy under the sun to alleviate the pain so I can be a functional adult again but to no avail. I’m laying in my bed and contemplating suicide, its one thing having pain but another to lose your job and family as a result of this dreaded disease. Its the worse thing to have.

    • Dont say that clinton,no suicide ok.i know its really depressing as i ve gone through the same.well pls search about kshar sutra method which is an ayurvedic treatment.pls find about that as it offers cure.If its not in SA which i think it wont be then come to india and get ur life bck.

  22. I’ve been without a doctor for 1 year. Treating this issue on my own with anti-inflammatories and pain killers. This is hard. So tired. Just laying in bed now feeling really down.

    • I know how down you must feel, but you should be getting medical attention though. How many different specialists have you been to, to get a few different opinions? I would find a really good colorectal surgeon and get looked at again. Treating it on your own with drugs isn’t the best idea. The pain killers are only masking it, they’re not fixing or healing you. So if you haven’t seen a doctor for a year, then you don’t have a seton in place??

  23. I had so many setons last year, from cutting seton (messed me up with unbearable pain), non-cutting, hell I even remember having a seton that’s as hard as an arm bangle cause apparently the hospital I was at didn’t have the rubber ones. I was in a sort of similar situation as you I guess because my medical aid at the time didn’t cover me for multiple colorectal surgeries (some technical mumbo excuse they used) and was promptly whisked away to the a public service hospital. I have no issues with the public health system here in Cape Town cause the best colorectal surgeon in town is a Professor who is treating patients in the private sector too. Anyway back to the reason why I didn’t go back, I see here people was placed on all sorts of antibiotics and pain killers but my surgeon the last time left me with a gaping wound in my buttock, cutting seton that hurt as hell and an infection that he said would go away with sitz bath using salt and gave me paracetomol. Needless to say I had a nightmare year. It seems all these doctors do is drain, scrape, place seton and send you home and this is repeated all the time because why? They can’t cut through my sphincter muscles as it would cause incontinence. Tired of this cycle I just ditched the whole system and is now at home. I have no faith in doctors treating this issue as I believe there’s no way they can treat this issue without damaging your sphincter. I hear and see reports on here about fibrin glue and plugs and advancement flaps but truth is these treatment options have little or no success rates. That’s what my surgeon told me, so they no longer do fibrin glue and advancement flaps are best for fistulas that are situated in the lower region of your rectum. This my only options are fistulectomy which is laying open of the tract but that will almost certainly cause damage. I’ve mulled with the idea to do this and deal with no pain for the first time in 2 years even if I have to wear I adult diaper for life. That’s how desperate I am. I just wanna walk back into my job as a chef and pretend this issue never existed but I can’t. I’m broke, living with me mum and I never thought that would happen at 28, the prime of my life. I might eventually go to the surgeon eventually but right now I’m not in a good space to do so. Thanks again for a magnificent platform you’ve created for us to share our pain, it really makes me feel better to share my story with all of you.

    • Lol on a lighter note though, the reason my wife left me is because we had ugly arguments about the usage of each other’s sanitary pads. She still begrudges me for the last pack of hers that I took. :-)

      • That’s pretty funny….she clearly wasn’t very supportive then! Stuff her, pick yourself up and get yourself better, you’re only in your 20’s – plenty more fish in the sea :)
        There’s a lot of puns and jokes around fistulas… good to try and see a lighter side of it, and make it your own, after all, at the moment, it’s part of you. And it’s definitely shaped who I am today!!

    • Hi chasez15, I think you’ve been misinformed by your surgeon…. advancement flaps are used for high complicated fistulas – I had two of them, both running through my sphincter muscles. The reason that they leave setons in for so long, and change them every few months, is to get your bum to a point where the infection has died down, and things have ‘dried up’ and the tissue is healthy and ready for a ‘fixing’ operation, like the advancement flap or the plug or glue etc.
      The tissue in my fistulas took a couple of years to settle down, for the infection to settle, for the fistulas to completely drain, and for the tissue to be healthy again and ready for an operation. During that time, I had 6 seton change surgeries.
      I made myself the healthiest I could possibly be so that the tissue would be ready for my advancement flap surgery. It was such hard work, I really had to push myself and force myself to be as healthy as possible. And it worked. What I was putting into my body (nutrients, fresh air, vitamims etc) was healing the tissue – even though the fistulas stayed open obviously because the setons were there.
      My advancement flap surgery had a 30 – 40% success rate – and it worked.
      You can get fixed, you just need to fight for it, and don’t take no for an answer, and don’t lay down and give up!!
      My surgeon said to me, that it could be a very long road, and that they may have to try several different methods, but that they would eventually fix me in the end.
      You’re young. You have a better chance at healing than someone who is older, less fit etc. So do something about it :) You’re never going to get into a good head space if you continue to let it get you down, take charge.
      I’m sorry if I sound like I’m lecturing you, but I really think that at your age, you’re giving up too easily :) There’s no reason why you couldn’t celebrate your 30th birthday fistula free – perhaps you should make that your goal! :)

      • Yeah you’re right, its exactly the kick up the you know what that I needed. This issue can be fixed. Its just a matter of the willingness to achieve that goal. Tell me, are you fistula free? How old are you? Male or female? How’d this issue impact you?

      • Yes I’m fistula free now, my advancement flap surgery worked, and I was told I had very complex fistulas. They covered two over with the same advancement flap. Luck may have something to do with it, but I think it’s more to do with my determination to fight and get rid of it. You’ll get there in the end, you’ve just got to pull yourself together and get on with life, be strong :)
        I’m female, and I’m 34 now. I was a bit of a party animal and travelled all over the world. The fistulas made me depressed, bed ridden, I lost my spark, I was feeling incredibly sorry for myself all the time. I didn’t have crohns and my surgeon told me it was just ‘bad luck’ that I had got them. I personally think it was more to do with not looking after myself for so long, and burning the candle at both ends. Fistulas ruined two relationships for me, and affected my career majorly. After a while of feeling sorry for myself and thinking ‘why me’ all the time…. I snapped myself out of it, and decided to get better. I gave up lots of things that I loved and became a picture of health. After a while, my surgeon examined me and said that the tissue in my fistulas looked the best it had looked, and that I was ready for the advancement flap. I’m now fine, and happy, I have a partner and we’re expecting a baby. I started this website to help other people see that there is a light at the end of the tunnel, you’re not dying of cancer thank god, it’s not a life threatening disease, it’s something you can hide if you really wanted to, and it’s something you can beat – you just need to fight, get really healthy and get the right advice – and that may mean going to 5 different colorectal surgeons until you find the right one. I went to 5 different colorectal specialists until i found one that gave me the correct information I needed, and was more experienced and knowledgeable than the others. I also felt I could trust him, and that’s very important too. I researched for hours to find him!
        Start working on your ‘get better’ plan – those fistulas aren’t going to heal on their own, and lying around in bed feeling sorry for yourself and taking pain killers isn’t helping anyone :)

    • Im 19 got diagnosed with crohns disease, and now i have a fistula, i understands really well how you feel.

    • Hi ..just want to ask..how are you now?? Did you undergo to other kind of treatment? Or any recommendation for treating fistula??
      Im really worried about having a seton.. my surgeon want to do the surgery by puting seton..it will help me you think? Or never to do one of those thing??

  24. Wow, everything you said I could totally relate to. I think I need to muster up the courage and go see my surgeon again. You see, here in cape town my surgeon (who’s a professor) is considered the best colorectal surgeon in the country. Professor Goldberg is his name, old guy with stumpy fingers that he loves to use when examining you ( lol!). Anyway I think its more to do with me not having the patience to see the whole process through, not making the necessary lifestyle adjustments and feeling sorry for myself. And you’re right, this is not going to disappear. I was voted the top 3 most promising chefs by the culinary institute and that’s part of the reason I feel down. I see old mates and they’re the epitome of the perfect life and when it comes down to them talking about cookery and ultimately the feared question, “where are you working now?” That’s when it gets to me because I feel so frustrated, ashamed that I lost everything because without good health you’re nothing in a professional kitchen. I’m so passionate about my profession but know that by feeling sorry and being a recluse won’t help. Can you mail me info about the SC diet? I can’t seem to access it on the site.

  25. I just want to say that this site is the first of its kind. Been looking for an interactive blog for sometime now. I love the fact that you’re still being there for other fistula sufferers even thought you’re completely healed. God bless you for this site.

  26. Hi, saw an old patient who has the same issue. He told me that his surgeon told him to stay away from foods that causes the colon to work really hard. By this he meant high fiber foods must be avoided, dairy, alcohol, starchy foods and red meats which are harder to break down and all this can cause inflammation of the fistula and then the whole cycle with the fistula starts. I’m not sure how accurate it is but he told me that he has been better when omitting the above foods. Thought I’d share it with ya’ll.

    • Hi Chasez, yes that’s so true. I cut out red meat, dairy, gluten, yeast and alcohol, and it made a MASSIVE difference. Everything that you’re passing through your body will affect the healing process. I found that dairy in particular was irritating my bowels, and when I stopped eating it, the inflammation in my fistulas calmed down. Diet makes a huge difference. I lost weight and looked healthier as well!!! :)

  27. I had a seton put in in july this year after a 5cm deep abscess burst in february this year. I still have puss draining – I guess this isn’t normal? I learnt the hard way – another abscess burst with seton in – that sitz baths are needed twice a day and i am not sure if the oregano oil is working. I find this quite depressing and wish the yellow puss would end but it is there everyday! Will it ever drain and dry up? My Dr didn’t investigate or ask if I have Crohns disease and i am trying to make changes to my diet. having a toddler and a newborn (june this year) makes it difficult.

    • Oh and I forgot to answer your question, yes the draining is normal. That’s the function of the seton to drain any fluids from the fistula tract so that it doesn’t clog up and become infected. This is imperative that the tract is healthy and infection free before and corrective surgery can be attempted. So the seton is normal and so is the draining. The draining will never stop whilst you have the seton in, that’s the unfortunate thing of a fistula. Some days it will be more and some days it will be less. My view on the matter is rather to have a wet bum than continuous pain and swelling as a result of fluid build up in that region. So don’t worry about the draining, just keep a healthy diet, have sitz baths regularly and follow your doctor’s advice.

      • hi i also forgot to ask about “swabs”. my dr took a swab recently when i got an abscess – with the seton in and said the results said there was nothing. what does that mean? surely with an infection a swab analysis would show something?

      • Hi Cate, they do the swab’s to check for infections, if you have an infection in your fistula, they’ll put you on a course of antibiotics. They must not have thought you needed it though. Which is a good thing :)

      • Hi I have just had another abscess burst – I hope out of the seton hole otherwise I have a new opening! Is there anything other than sitz baths? i have them regularly I also tried wild oregano oil (having a break from that) and I am on antibiotics. I was promised a 3 month waiting list for my next operation – that was over 3 months ago – but because i am a medicare patient I am not a priority! It’s very difficult with babies to cope with this. Can I use betadine or tea tree oil or something as a cream over the area? The seton is really quite uncomfortable and now with more pus and blood and stinging in the area it’s getting more difficult. is there a time limit to how long a seton can remain? I never had an abscess before and now they are occuring regularly. Why?

      • Hi
        It looks like I have another abscess forming next to the seton – so does that mean another fistula? My Dr kept putting me off and off with the operation and now I have moved far from her area so I guess with the public system that will mean another year of waiting? What will happen if I have a seton and another fistula with an abscess in a different spot? I feel that the seton was a really bad thing for me from the start. I can’t have different antibiotics because I am breastfeeding and I can’t have an op because that might leave me incontinent. Do they put multiple setons in? at the moment I just have a lot of blood coming out – unusual I usually just have yellowish pus and quite a sore bottom that hurts when I break wind – the other side of the anus to where the seton comes out. I have been using wild oregano oil but now it just seems to be irritating the area and sitz baths don’t seem to be working as well as they did.
        Please help – my next specialist appointment isn’t for another 3 weeks but i might be in hospital before then …

  28. Hi Cate, the yellow discharge is as a result of the fistula tract running through the mucusal glands that’s responsible for the functioning of bowel movements. When it became infected the abscess drained through your skin and formed a secondary opening. Thus due to this abnormal connection you will find a mixture of pus(infection), blood(abscess) and yellow mucus from the gland. Sometimes some people have stools passing through there as well. I think its best that you write down a few questions you might have and go back to your doctor with them. If not satisfied then get a second opinion. I’ve been a year without a seton or doctor visits in the blind hope that this thing will disappear. After founding this site, it has re-invigorated my desire to fight this illness. I hope this helps.

    • thanks i wasn’t told that the yellow mucus is from a gland. does this mean it will never be dry and i shouldn’t worry? or is it like a bad cold with a thick snotty nose – eventually it should dry up? i am really worried about the next operation where they move the tract?? and try to make anotherone so that in a final operation the muscles of the anus won’t be damaged and less likely for incontinence??? i read that some people can dry up and the seton drops out with everything being ok without another operation. i would prefer this.

      • Hi cate, I also have a high complex fistula. I think your doctor is using a cutting seton that cuts through the fistula tract and that heals as is it goes? Well that’s the theory my doctor had. The cutting seton has some success. I won’t worry about the fluids. As long as you’re pain-free. That’s all that matters. Also speak to your doctor about your incontinence fears. I told the doctors at my clinic that they can try whatever surgery but that they not leave me with incontinence. So maybe you should do the same.

  29. I had a LIFT procedure done a week ago…just wondering if anybody else has had this done and the recovery time? How do you know if the procedure worked or not?

  30. I am so happy to have found this sight, My mom 72 years old had colon cancer surgery, the doctors manage to get all the cancer but the day she was to be discharge from the hospital, after getting out of bed she felt a terrible pain the doctors told her that her colon rupture, they said this is call a fistular this is something new to my mother and myself she is now dealing with a open wound, where they went in to do the colon cancer surgery, and deeper into the wound is her colon this is where they said the fistular is, the doctor said it has to drain which this green stuff comes out and it has been draining for a month now, and because of the drainage the doctor told her it would be better for her not to eat solid foods so she has been on a TPN which is something to administered the food through a IV so she’s unable to eat, and she’s unable to come home. she spent 3 weeks in the hospital and now she has to go to a acute care home, and she hated, my mother’s whole life has change they tell her this problem with the fistular will take a while in my mother is not taking the news very well. the doctor said it might take a another month maybe longer they really couldn’t give her a definite time, the doctor said my mother fistular is in her colon and can’t be operated on at this time until her colon firms up they said its to soft to operate at this time, they are hoping that it heals up on it’s on, without surgery, this is a nightmare for my mother we never knew this could happen, she is starting to get depress and feeling hopeless that she would ever be her old self again my heart breaks for my mother we are praying for her so hard every second of the day, my mother is a out going lady love the outdoors and spending time with my dad she;s 72 years old and I am so scare because she can’t eat real food and only eating through a IV what is this doing to her health, IF ANYONE HAVE BEEN THROGH THIS AFTER COLON CANCER SURGERY PLEASE RESPONSE WE ARE DESPERATE FOR SOME ANSWERS. THANK YOU SO MUCH…DIANE

    • Diane– How is your mother doing? I have a similar situation to yours. My 75 year-old dad had surgery to remove colon tumors in April 2012. He was in the hospital for a month with one complication after another, including a fistula (which they only recently diagnosed as such.) For 8 months, he has been draining fluid from his incision and it has needed to be tended to several times a day. While undergoing chemotherapy, the fistula would get worse- on three different occasions, he was rushed to the hospital with a raging fever/infection. They have decided that the only way to alleviate his pain and (hopefully) repair the fistula is to go in surgically to remove the part of his intestine that has the fistula. This is considered a more complicated version of the first surgery he had. He is meeting with the surgeon again this week to learn about the risks associated with this surgery on an older man who is weak from 8 months of chemo and who has had numerous infections the past almost-year. I don’t know what the procedure is called yet; just that it involves cutting out the affected intestine, and it’s considered a very major operation that involves a minimum of 2 weeks in the hospital and a subsequent stay in a rehab center. I would be interested to hear others’ stories of surgery to repair a fistula.

  31. From ya’lls experience with fistula’s, what do you do for work? At my job, I don’t lift alot of weight but I constantly lift, and carry 25lbs or so and do some walking. Should this affect my work?

    • Hi nate,

      It depends on many factors. I’m a chef and I carried lots of pots and pans. At first I didn’t immediately feel the pain but found that the extra pressure from lifting puts a lot of strain on your colon and with the fistula there it can cause inflammation and swelling that results in pain. This cycle went on and on until my boss fired me because I took off a lot and wasn’t as quick as I used to be. So my point is yes carrying 25lbs (13kg) can affect the fistula but it depends on the individual because not every individual reacts the same way physically. So maybe its better if you ask your boss to be on light duty for atleast another month? Because right now the wound is tender and needs some time to heal properly. 25lbs ain’t gonna help the cause in my opinion because you don’t want issues further down the line.

      • Hello chasez15,
        Thanks for the reply. I guess I’ll just have to take it easy for a while then. I’m going in to get it checked out today, I don’t know when they’ll opperate as I was put on antibiotics just a couple days ago. From what I’v read, the opperation don’t sound like any fun.. After opperations, how quickly can I go back to work?

    • Hi Nate,

      Until the seton drain was inserted I didnt have much of a problem doing heavy lifting, although this wasn’t part of my day job and would be mostly on a weekend. Walking should be more beneficial than sitting on your butt all day, unless you have an open wound or an abscess. However, for the first 2-3 weeks after the seton procedure there’s no way I could have lifted 25lbs I was in so much discomfort and simply walking around was a struggle. I’ve now had this thing in for 3 months and life is pretty much back to normal, I’m even doing some light weight training although I’m careful to avoid any movements that might put too much pressure on my sphincter muscles.

  32. I also want to say thanks for this useful site, being a male in my early 20’s is hard when having an issue such as this. Theres so many other things to to other than be in pain.. Im just going to try to be positive and be healthier and look forward to being back in shape. Sounds like this is the best way to get better :)

  33. Hi. I’m a 19 year old female & have had a peri anal fistula for 3 years! However, it only got diagnosed as a fistula in August 2012 at the hospital. October 2012 I had surgery, I was terrified! But a seton has been placed, it doesn’t get tightened. It’s just draining as the fistula has gone through spinachter muscle. First 2 weeks were awful! Now the wound has healed. Still quite sore of course when I walk & sit down. I feel all alone :-/ I’m only 19! I’ve been told it could take several surgeries! It’s scary, just want this thing to be gone! It’s nice to know I’m not alone :)

  34. Hello All
    What a lovely site.
    I am 35yrs old a mother of 3. I have been suffering with Anal Fistula for approx 20yrs now. I have had approx, 15 operations. I have a seton stitch at the moment and am going for tightening under anaesthetic on 19th December again. :( not looking forward to it. The doctors i have seen have really not been at all helpful, can never get much info out of them. Lost count of the amount of doctors i have been to already. My concern with the seton stitch is when it eventually comes out, am i going to get a full blown fistula again? with the seton stitch i still have drainage after 1 yr, and i suffer with alot of pain, which i have read is not normal.

  35. Sorry My name is Stacey!

  36. Hello,

    I have had fistula for a year now. Had a drainage seton fitted in the first week of june. Had my second surgery last tuesday – the doctor did a LIFT plus laying open.

    The problem is my bowel movements – it hurts like hell. Has anyone had this procedure before please? How long does it take to heal please?

    • I had a seton fitted in November 2011 (I had a 6 week old baby at the time) and removed and laid open in April 2012. The fistula still hasn’t healed but day to day its easy to live with and sometimes I even forget that its there.

      Initially bowel movements are so painful and I can remember that like it was yesterday and I really feel for you!!! I used to sit smelling lavender bath salts, I don’t know if it calmed me down or whether it just took my mind away a bit but crying and sobbing where common place. All I can recommend is using wet cotton wool and having a bath or shower afterwards. It is really really awful but please believe me when I say it does get easier week on week, there is light at the end of the tunnel and things will get better and easier to live with. I was terrified that I would never improve and forever be stuck with the pain but it does get easier.

      • Hi JP,

        Thanks for sharing your experience. it for sure helps me to build my confidence that the only way from now on is up.

        KB

  37. Hi, can anyone share some details about good colorectal surgeon who has successfully helped to cure their fistula?

  38. Hi, my name is Daylin, i am 27 with a small kid and I also have a perirectal fistula that first started as an abcess during my pregnancy. I had it drained and that’s how it started, now i have a seton in place for about 3 1/2 months, it drains all the time, can be sometimes painful and uncomfortable. According to the doctor, he will have it removed by december.

  39. Hello,

    Myself 30years. I have Fistula in Ano and doctor suggested to go for scan (Perianal USG). I have gone through the scan TRANSRECTAL ULTRASONOGRAPHY, it says:

    There is a left posterior perianal fistula measuring 3.0 cms in length. It courses along 5 o’ clock position and opens into anal canal at 6 o’ clock position through the upper part sphincter.

    No evidence of superficial or deep collection in the para rectal region.

    No obvious mass is noted in the rectum.

    IMPRESSION: HIGH PERIANAL FISTULA.

    please suggest me how to take this and is it cureable completely and is it more criticial?

    Thanks,
    Mahesh

    • Mahesh,
      From my understanding, a fistula NEVER cures on it’s own. You’ll need to get it operated on. Depending on your health, it can be completely cured. If you have IBS or Chrones, my surgeon has told me they have a much harder battle with fistulas. Good Luck!

  40. Hi my name is Ren,
    I’am just new to this site,but l can tell you now that l don’t feel alone,reading everyone elses problems with these nasty fistula’s
    and going through different procedures and operations to find a
    complete cure really helps,I just had my third surgery a few days
    ago.I too have a complexed fistula that is deep in the muscle of
    both he interal and exernal sphincter muscle of the bowel.My
    colorectal surgeon does not want to do anything invasive right now
    so he used the fiborin glue procedure,only 20% sucsess rate,yet
    he feels this will prepare me for the next step,which l will find out
    on Dec 10th.I was okay until l reached my 3rd day post/op and
    then the unbearable pain and pressue in the rectal area started.
    I do not like to take anything for pain because it upsets my stomache
    to much and l start to vomit.Unfortunttely l started bleeding when
    l had my last BM,only way l can stop the bleeding,pain and pressure
    is by putting myself on clear fluids.that is what seems to help my condition.
    They are looking for crohns disease with me and now feel it is up higher
    in my large intestine.Iwill keep you posted on my healing with this fiborin glue procedure.Best of luck to everyone going through this horrible disease.

    • Renne, I just wanted to wish you good luck with your future treatment and to say be strong. It sounds like you have a good surgeon anyway one thing I was really lucky with… something to be thankful for at least. Its a shame pain killers don’t agree with you, unfortunately, vomiting is one of the last things you want to be doing with one of these things. I found it quite amazing just how often these muscles are used to do things that you would never have dreamed of… for example – I now find sneezing excrutiatingly painful!

      • Thanks Jan,
        I saw the c/r surgeon today,it was a quick 5 minute visit,the incision site looks good,had alittle pus drainage
        from it.I need to give this sometime and he will see me in
        6 weeks.As for the excruiating abdominal pain he still needs to investigate further.I had IBS for 30 years now,he
        also found diverticulous with the vertual cat scan done in June of this year,also had an anal fissure for years and he still thinks l have crohns somewhere.I’am hoping for the
        best,knowing it will be a long painful processes until he finally finds the internal passeway,that caused this fistula to begin with.I will keep you posted,for now in order to stop this horrible pain in my gut l put myself on clear fluids
        for at least 3 days and then l’am able to have somewhat normal days. I also agree with you even sneezing can give you excruiating pain at times….

        Renne

  41. Hi everyone,
    I had an abcess that was operated on twoce and has now developed into a fistula. The surgeon I am seeing said to wait 2 months for the fistula surgery as it is still draining puss. When I asked what the surgery was and how long the recovery time would be, he suggested I ‘look it up’. Well, i have looked ot up and it seems that complications are pretty common and really there are so many options put there, i’m not sure what he plans to do. I think it will be opened up and he mentioned a drain. Is this a seton? Will it be packed? How long is recovery? I have three kids under five and very limited help as my parents and husband all work. I am terrified and I’m trying to find another doctor as each one I’ve seen has treated this as no big deal, when it is a big deal. I’m in some sort of pain every day and it makes it hard to live my life. Any help pr advice anyone could give me would be greatly appreciated. It’s nice to talk to people with the same problem. It’s not something I like to talk about, but I’m sure people wonder why i walk like I’m 85 now. I just want my old life back!

    • Hi Jen,
      I was in the same place 14 months ago,and dealing with stomache and bowel problems for many years.My experience has finally led me to a colorectal surgeon who carries with him 14 years of medical expertiece in this problem.So many surgeons,gastro and gp’s are still unaware of the horrible perianal disease and they pass it off as no big deal!!! It is along process that carries a degree of pain and disabling to the person that has it.I was
      a nurse and could not pin point this problem on my own.
      Please get into see a colorectal surgeon,ask alot of questions,bring someone to appointments with you,and write down all your concerns before you see them.I was very active 14 months ago before my first surgery,l played competive tennis 5 days a week,did yoga,zumbo twice aweek and weight trained every other day and walked 5k
      every other day.Now after 3 operations later,on a good day l can do a 5k stroll…..This is me though,they found a tear from my second surgery in my L 4-5 disc,just another complication from my second surgery,so everyone is different.You have to find what works best for you.I put myself on clear fluids for at least 3 days when l have this thing flare up,l also found probiotics help ,drinking alot of water,staying away from red meat,gluten and diary products,alcohol and when l get the fever,chills and generally feel ill plenty of rest.I’am learning what works for me and l hope some of these
      suggestions l made will work for you.I agree with you,l would love to have my old life back!!!

      Renne

      • Hi Renne,

        Thanks so much for your response. I will definitely try the things you’ve suggested to keep this under control. I’d like to see a colorectal surgeon, but there don’t seem to be many in my area. I live in Canada and healthcare, while free, works at a very slow place if your illness isn’t life threatening. I’ve been operated on twice for the abcess and they really haven’t run any tests to see if I have an underlying condition. I’m trying to get referrals for another doctor, but I haven’t heard anything back.

        It’s good to hear that other people deal with the loss of energy too. I went to the grocery store on the weekend and I had to lie down after. That’s definitely not me. I hope that this new surgeon can make a difference for you! Were you diagnosed with more than just the fistula?

      • Hi Jenn,
        I have had IBS for thirty years,Gastric refl
        ex problem for 15 years and a anal fissure for 15 years.They keep looking for crohns with me now,because they keep telling me Irritable bowel syndrome doesn’t cause fistula’s in ano.My MRI ,this past march showed grade 4 trans-sphincteric fistula tract going through internal and external sphincters,through the ischioanal fossa,where there was another abscess,1cm in diameter ,the tract then extends to the skin surface and exits out my right butt cheek.I don’t know if you had an mri with the dye,that test seems to be 90% accurate in finding the fisula tract.Don’t give up,keep trying to get into seeing a colorectal surgeon.This is a big deal if your diagnosis so far is perianal disease….Medscape is another good site for medical inf, signs and symtons,of what you are going through,This site is the only site that made me feel l wasn’t alone in this disease and that others where finding difficulty with disabling symptoms and terrible pain at times.

        Renne

  42. Ok so I have no where to go other than this blog to express how I feel. I need to get this out. I posted on this blog before. Well in a nutshell, wife left me 6 months after developing my fistula and its been close to 2 years now that we’ve been apart. I silently hoped and prayed to God that she would not go through with it but I got the divorce papers today. I’m devastated. Not only am I homeless, broke and unemployed, but my wife has officially cut ties with me. I live off state money and live at my parents’. I’m at wits end and don’t know what to do anymore. I want to work but this fistula flares up from time to time so its impossible to hold down a job as a chef. I feel useless and like I’m a nothing. I don’t deserve to be on this earth. I’m contemplating suicide. I’m sorry.

    • Hi Chasez, I’m sure it must be devastating to get the divorce papers, even after 2 years of separation. I understand that you were hoping she would change her mind. But in all honesty…. why would you want to be with someone that broke up with you when you needed them the most?? I think you should cut your losses, thank god that you escaped a lifetime with a selfish person, and run for the hills!!! Don’t sweat it. There are more important things for you to be focused on right now – like getting yourself back into tip top shape. If she wants a divorce, let her have a divorce, and move on. I say, sign the papers with a smile on your face, she wasn’t right for you, and doesn’t sound like a very nice person.
      As far as being homeless goes – well, you’re not homeless, are you!? If you were homeless, you wouldn’t have your parents house to stay in. You’re LUCKY!! A lot of people don’t have parents that would take them in when they needed somewhere to stay. You’re very very lucky that you have an option to stay with your parents.
      If you don’t think you can do cheffing for a while…. why not do something else in the interim, until you get yourself better? I have other friends who had to change their jobs due to illness, to something less physical, just while they got better – it doesn’t mean you’ll never be a chef again.
      I think you were getting yourself on the right track a few weeks ago, and starting to feel more positive again. Keep that momentum going. Don’t let a selfish woman sending you divorce papers ruin your life. She’s not worth it. There are more important things in life than being married to someone that doesn’t care if you’re sick or not.
      Pull yourself back together and start a NEW life. Suicide is the most selfish thing on earth. How do you think your parents would feel if you did anything to yourself?? You’d ruin their lives. Suicide is never an answer to any problem, there is NO problem big enough to warrant taking your life.
      You are young, you will get better. Crikey, you have a fistula – not cancer. Just get on with it – in the nicest possible way :)
      There are lots of happy stories on this website of people going through fistula surgeries for years, fighting, and coming out the other side better and stronger for it. There’s no reason why you can’t do the same thing.

  43. Hi I have anal fistula about 9 years ago I go to surgeon and he operated it and after two years pain start again and surgeon operated it again and now about a week ago I have started pain again what should I do

    • You need to go and see your surgeon again. I would suggest getting a second opinion from a different surgeon. It is common for fistulas to reoccur, perhaps yours never completely healed the first two times, and so it has come back again. It’s not going to go away on it’s own though, so go and see your doctor, and get a second opinion… and even a third opinion! If you think your surgeon isn’t dealing with the problem properly, go to someone else.

  44. Hi, I was just diagnosed today with an anal fistula that repeated doctors in the past misdiagnosed as infected anal fissure. At present, thanks to a 7-day dose of leviquin antibiotic, it is not bothering me all that much, but in the past, the puss and blood problems start to happen over and over again after an Rx is over (again, before this was a ‘fissure’ to me — now I clearly see the fistula diagnosis). Anyhow, I am getting an MRI to determine if it is something that will affect my spinchter muscle or not in terms of surgical choice.

    Based on my research online, I would like to pursue the anal fistula plug course of action. (I am correct in assuming that the fibrin glue treatment is really not all that bad). Would you be able to describe the post-operative activities/length of time for fistula plug?

    One last question — if it turns out to be a simple fistula and can be removed with a fistuotonmy — what is the recovery time/activities for one of those?

    I had plans for January, but now suspect they may be changing :/ Yikes…

    • Hi James,
      You are heading in the right direction!! MRI,is 90% accurate way of finding
      where your fistula is situated.In the way of your plans,l would wait to see what is actually going on with you.I can relate to the puss and bleeding..
      You are not alone in this situation.This site is amazing in helping us get through are difficult times.Hang in there…

      Renne

      • Thank you, Renee! I appreciate the site! Given that I was diagnosed three times before with anal fissure, do you think it is possible that I just have an infected anal fissure causing the abscess and that it may not actually be a full-blown fistula?

    • James,

      Before you move forward with the fistula plug, I would strongly encourage you to look at a fistulotomy or non-cutting seton installation followed by a LIFT procedure, depending on how deep your fistula runs. If it doesn’t run too deep in your anal sphincter muscles, a fistulotomy may be all that is needed. This involves fileting the fistula open and letting it heal (with lots of sitz baths and time). If deep, a non-cutting seton will keep the fistula open at both ends, stopping the repeated build up of pressure and major drainage every couple of days. It will drain constantly but will shrink the fistula track to just a very small track. The LIFT (ligation of intersphincteric fistula tract) procedure will ligate or close up the opening in your anal cavity and will stop waste and bacteria from moving into the fistula tract. This cannot be done until the tract is nearly closed up by the seton.
      I’ve only been battling this problem since early August 2012 and had the seton installed October 8, 2012. The LIFT procedure was done December 6 where the seton was removed. My doctor also detected a second fistula tract that stemmed off the original one, so he cut the tract open. I am 3 1/2 weeks post op and feeling better than ever. Still a lot of soreness and daily sitz baths (sometimes multiple ones per day!). I go back to my doctor for a post op visit tomorrow. I’ll post my results on this site.
      Don’t be afraid of the scary YouTube video of the LIFT procedure. It is done under general anesthesia (I had a spinal) and you won’t feel a thing. My BM the next day was uncomfortable but much less than the constant pain I’d felt from the fistula before I had anything done. I don’t know anything about cost, as my health insurance covered everything after I hit my deductibles, fortunately.
      I hope this helps you and anyone reading. Best wishes!!

      • Also, my doctor tells me that the success rate with the LIFT procedure is quite high, with only about 10% chance of recurrence. This is a relatively new procedure for fistula treatments, but is very simple. Based on my research, there isn’t any other treatment with that high of success rate.

  45. Hi James,
    I know that a fissure can tunnel deeper into the tissues,causing a fistula and plus you have had two abscess,which is a sign something is going on.
    Hopefully they will do the MRI with the dye and find the fistula track…..Let me know how you make out.I know this process can be frustrating,time consuming and painful,so please ask alot of questions,and it looks like you have already looked into different procedures,which is great.Mescape is another good site!! I had the fibrin glue procedure done,only 20% success rate,but my fistula has affected both my muscle sphincters and my colorectal surgeon did the least invasive surgery.I’am still bleeding,had this done nov 29,2012.I know for myself,this will be a very long process,but everyone is different.My fistula showed up on the MRI.Hang in there James.Best of luck!!

    Renne

  46. Hi, I am so glad I found this site, as depressing as it is to finally know the truth! Drs obviously don’t want u to know just how much suffering and pain is involved. I guess if I knew I wouldn’t have been as quick to agree to the seton. I had my surgery on the 29th november and initially with iv antibiotics, sitz baths and narcotic pain relief, my recovery was going extremely well. Then around 2 weeks later an infection caused unbelievable pain. Back on antibiotics for 10 days and steroids as well. Again started to recover, but as soon as I stopped the antibiotics the pain and swelling start to come back. Each time I wean myself off the pain killers only to have to start taking them again!
    My drainage is quite minimal, but I do check the seton and move it around a bit in the bath to make sure it isn’t adhering to my skin. I gather from the above comments that minimal drainage is a “good” thing, however is it normal to still have quite a large area of swollen tender flesh, (obviously infected), and not drain much?
    I am fairly active, had thought that getting back on my feet and making myself heal through positive thoughts and getting back to a normal routine would be beneficial. Boy was I wrong about that!
    So having found your site I now realize that I am going to have to completely change my lifestyle to allow myself to heal.
    I am a smoker, coffee drinker and sporadic eater due to my work in hospitalily. Fortunately I don’t drink alcohol much, won’t miss it. But the coffee will be mourned. Ciggies are a no brainer, why wouldn’t I give them up under these circumstances? wish me luck?
    I tried to return to work several times over the last few weeks and found that the pain was intolerable, I couldn’t just go hop in the bath or use my sitz, and as I work with money, I couldn’t take the usual amount of endone, as it makes me feel like Ralph Wiggam! I have just returned to work and am being driven crazy by questions like “all better now?” How do I make my boss understand that better isn’t going to happen for such a long time? In hospitality, at Christmas time, u do NOT have an option to be sick! I have worked 2 full shifts so far, the first was ok, but after yesterday, collapsed into tears of frustration and pain. Now worried about depression as well.

    • Hi Meag68

      I do wish you luck!!!! all the best.I never had a seton,so l can’t help you there,l had the fiborin glue procedure,done nov 29th/2012.I’am still draining alittle from it.Like you l was very active,now l’am finding it hard even to walk short distamces,very painful!!! I ice my groin and inner thigh area,this seems to help me abit.If your incision site,gets very warm and red,usually sign of infection.I found probiotics help,putting myself on full fluid diet also helps.I know everyone is different,but after 15 months of this for me,l continue to learn inorder to stay pain free….
      Take care
      Ren755

      • hi ren755,
        I must have missed this in all my internet trolling for answers, thanks so much for your support.
        I am now living healthier than I ever have. I sailed through giving up smoking, pain is such a good motivator isn’t it? I think being on narcotic pain relief has helped too, keeping me nice and relaxed.
        My fistula is still very painful, have had another surgery to release more fluid from infection, basically they just incised the drain hole to make it bigger. NOT FUN.
        I am staying positive, and happy. Feels like this is just as important as looking after my body.
        My work have been really supportive, and I have until the 20th of this month off. I am hoping I don’t need another surgery for a while as I miss working so much.
        The SC diet is fantastic at making bowel movements less irritating, have definitely noticed a change since I started! Plus saw a new GP who put me on a very mild dose of Endep which is an anti-depressant. I’m taking it to help control my very painful spasms as it is a muscle relaxant. I have just started this medication last night but will report on its effectiveness in a few weeks time as it may help someone else out there.
        Thanks again, hope you are going well?
        Meg68

      • My son was put on a wound vac and that really, really helped. Perhaps this could help you too?

  47. Hello to all, its really good hear that my wife and I are not alone in all this problem were having. My wife three years ago had a hemorrhoid which was operated, after a week or two there was this shocking pain right next to her anus, it burst with some liquid, I took her to the doctor which said it was a “Draining perianal abscess” that we should not worry, it would heal in time. It’s been three years, and it’s still healing. Sometimes there a little blood sometimes a little of fluid. The doctor which is specialist in colorectal say that its looking good and in time it will heal. He sent us to make a MRI and the result were that she doesn’t have a fistula. He then sent us to a gastroenterologist to make a colonoscopy and he didn’t find no fistula. So we left it like that for about a year. After some time ago we had to change doctors because of our insurance and the new doctor which is always in a rush said that it is a fistula and that she needs a seton. But my wife say she doesn’t feel any pain, it’s draining just a little, no pain at all, looks like it’s healing, why mess with it if it’s okay even if it take more time to heal she’s use to it. Should she get the seton or leave it the way it is?

    • Well, did the new doctor see a fistula track? Ask the new doctor to describe the track of the fistula for you — in what country do you live, Felipe? My surgeon said that his father lives with a fistula and is choosing not to do surgery, but I have read online that it can be bad to let these things fester, independent of the obvious quality of life issues at hand.

      • No, the new doctor want to examine her and but a seton. We live in Puerto Rico. The seton as I’ve been reading is for the fistula to drain and she is draining without the seton, Some info says it’s suppose to drain until it heals so she wants to wait for it to heal. The things is that it doesn’t hurt and it is draining just a little.

  48. I’ve had a peri anal fistula for 3 years, I had a drainage seton placed in October and honestly, I’ve had nothing but problems. I would like too know if it should still be so painful 3 months after surgery! It really taking over my life :(

  49. Just returned from hospital visit to ER. Second infection since surgery on the 29 November. I’m having 3-5 sitz baths a day. Have eliminated all the bad foods and am well on the road to giving up smoking. Totally stopping tomorrow. My question is what else can I do to help stop the infections? I have been given enough antibiotics for 7 days.

  50. I don’t have insurance and my Dr told me I might need a total of 3 surgeries if it’s complicated. I’m 26, all they did was examine me and told me it was a fistula. It’s happened before in the same spot twice before, but NEVER this bad, they had just drained it in the past and it went away for 3 years-ish each time. I’m just wondering if anybody knows ROUGHLY how much a fistula removal surgery is out of pocket. I watched a video of a surgery, and now I’m scared…well shitless. I can’t even begin to explain my pain right now, last night must have been worse though because I took my Swiss army knife and tried to drain a super sore and tender area that I can only imagine is a second one??! It’s more on my cheek but it’s really close to the other one, like on top of it. I can’t sleep and don’t know what I’m going to do about my job. I can’t bend over or get up from laying on my stomach with wanting to wet my eyes. Shit balls I’ve never felt so low in my life.
    Happy New years everybody

    • Greg,

      I feel for you man. I’m not sure how much it costs because I’m from Canada and it’s covered here, Thankfully or I’d be screwed after the 10 surgeries I’ve had to have. I know you can get multiple “tunnels” from the same fistula and it’s best to do the surgery asap if you can so this doesn’t happen. I know it makes you feel pretty low, to have something like this. Maybe if you can just do the one surgery and have a seaton drain ( not a cutting seaton) installed you can keep the fistula ope and draining so it won’t get infected. You can always to the other surgery a while later if you decide. If you can keep it draining there may be less pain and pressure. Soo sorry to hear your having issues with this.

      Jenn

  51. Hi Toni, I recently consulted a young doctor who was prepared to tell me the truth about healing periods and pain. Apparently it is perfectly normal to experience pain, infections, swelling and irritation for a long time.
    He told me not to expect to heal in the 4-6 week period the surgeon suggested, but that 6 months to 2yrs was more normal.
    Do everything you can to help yourself heal. DO sitz baths with Epsom salts, this really does seem to encourage drainage. DO eat well and limit foods laden with bacteria, like meat and dairy. Take your painkillers, don’t tough it out like I had been, this just makes it harder to cope and puts extra stress on your body. Don’t eat nuts and seeds. Avoid starchy foods like potato and rice.
    I am experiencing the same problems along with everyone else here, reading back through the posts has been helpful. Some advice is quite good.
    Good luck to you.

  52. I’m really happy to finally find a group like this on line. I’ve been dealing with this by myself for 16 yrs now. I’ve had a chronic fistula since I was 18 and I’m in my 30’s now. I’ve had about 10 surgeries on it over the years, but it always comes back. I’ve had scopes, fistulotmy, fistulectomy, seaton drain etc. Now we’re thinking that it’s time for a bowel resection. I’m so tired of dealing with this and its interfearing in my life a little too much. I’m at the point now where no matter how much I bathe ( 3 times a day) i still smell like unwashed bum and I have to wear me’s boxers because regular undies cut into the fistula exit. Soooo not good for the selfesteem. I’m married to the most supportive hubby so i’m lucky that way and I have a beautiful son. I have a great job in health care, my life is good all around except this damn fistula:( I’m really concidering the bowel resction and temporary colostomy because I’m told that this will definately heal it. It’s such a dissapointment to go through all the other surgeries and have them not work. Some of them have been pretty painfull too. I also want to get this fixed because I want to have another child and I can’t do that in this shape.

    I feel for all of you on this site and can relate to many of your stories. It sucks soooo bad that we have to go through all of this. At least we can vent and support each other here.

    Jenn

  53. Well, 4 months now with a non-cutting vessel loop Silastic seton. Overall, the pain has been
    bearable… there have been a few ” bad string days”. Still experiencing slight drainage ( wearing pads daily) I carry a zip lock bag in my pocket with a few wet wipes to clean up while at work, and sitz bath with Epsom salt daily.
    The one thing I did encounter was that the discharge was making my butt raw and itchy( think extreme diaper rash) What I found works is a bit of barrier cream smeared around your butt after every BM. This hasn’t caused any negative issues.
    Still waiting to see CRS and get MRI or ultrasound done. I’ve called both my surgeon and the CRS and left messages. Apparently my condition has been classified as non life threatening or urgent. I hate being a pain in the ass but I’m living it.
    It sounds like I’m having a better go of this than some of you ( pain wise ). Chin up, it’s got to get better.

  54. I first had a minor surgery to remove a pocket of infection on 12/18/2011. I then had fistula surgery in April 2012 when it was realized what the problem was. The healing process took a very long time. In late June/early July, the wound reopened but has since healed. The reason for my post is that the pain after a bowel movement as still there and sometimes extreme. Does anyone have a suggestion? Fiber pills seem to help, but if I stop the pain comes back with a vengeance. It seems to be two to four hours after a bowel movement and it last for about three to four hours.

  55. I have that same pain after a b/m! For me it is colon and sphincter spasms. It really helps me to get in a hot bath for a good long soak, this relaxes the muscles all over your body and helps to calm the spasms somewhat. Could this be what you are experiencing?
    I still have to take pain killers daily, but elimination of meat, dairy, sugar, bread and grains has helped so much. I think I may finally be healing. There has been no swelling (collection) since my last op to widen drain around seton.
    I was healing too quickly from the outside, thus the fluid wasn’t draining properly causing a back-up, and then infection.
    I cannot tell u how much better I feel after eliminating processed food from my diet, I started just before Xmas, and in that time, my skin is clear, my body has detoxed and I feel really positive about kicking this problem for good!
    Hope u find some relief :)

  56. Lots and lots of fresh vegies, and fruit. It’s quite hard at first but I have found quite a few sites on the internet for Paleo recipes.

  57. Hi just a bit of advice needed if anyone can help i would be grateful. I had a draining seton (also got sepsis)(and was hospitialized for two weeks and nearly died) from june 2012 to 7 jan 2013 ,which was still draining (i was changing dressing 3/4 times a day bescause of pus) Then on 7 jan 13 i went in for surgery ,i told one of the doctors who see me before op(not the surgeon who was doing the op) that it ws still leaking a lot .I only said this because i read that you should not have the operation done if it was still leaking ? anyway i had the op done and was told after that the surgeon had cut part of my sphincter muscle away ,cleaned that tract with a prob and layed the fistula open ,he said it didnt need to be packed daily I got home from hospital same day.The next day when i passed motion i never felt pain like it the burning sensation was unreal ,and evertime i pass it is the same pain.I knew it was going to be like this, but my question is once the cut heals over surely the fistula will come back and the the sepsis again ?i havent even been giving anti-biotics i called the surgeons office and was told i dont need anti-biotics as the pus needs to get out .Im just really worried that the op should not have been done until the pus had all stopped .I cant bear to get sepsis again !!! Sorry to be so long winded any advice would be gratefully recieved Thank you

  58. Oh you poor thing! I don’t know if u can, but if possible I would go see another doctor. The idea of not needing dressing/packing, and for u to not be on antibiotics sounds wrong to me?

  59. Thanks for reply

  60. Hi Trey,
    No worries, hope u are feeling better? I am having a lot of success with my new diet, have found pain to be a great motivator!
    Every day I am experiencing less pain, it’s amazing what a difference food makes. I realize not everybody likes fruit and vegies, but anything is worth a go when dealing with something so chronic and painful as this!
    Have a look at the Specific Carbohydrate Diet.

    http://www.breakingtheviciouscycle.info/

    This has also improved my general health. I feel so great, and bowel motions are so much easier and less painful.
    Another thing that has helped is Endep 10. A very low dose of anti-depressant, used in my case as a muscle relaxant. It has improved my pain after b/m drastically, by reducing muscle spasms (sphincter and colon). Talk to your doctor about it? The only problem I have with it is it has changed my sleep pattern a little, have more trouble falling asleep, but am sleeping later in the morning.
    Early days for me yet, to be professing a total recovery, but by the end of this week I should know just how effective the SC diet has been. I will have been off antibiotics for a week by then, and if my infection doesn’t reoccur in that time, I reckon I’ve got it beat!
    Wish me luck?

  61. i had a fitsula surgery in 08 hadnt had a problem until jan of 2011 when i was abroad i had an abscess that discharged after 3 days of immense pain and continued filling and discharging for ten days or so,during these days i was taking 4-5 warm baths a day ,flaxgen and regularly cleaning that area.
    By the time i came back and went to my doctor there was nothing showing…..i dont know if i am healed or not but there is no pain no discharge for past year!!!can anybody help here …should go back the surgeon again or ….

  62. Hi Everyone. Thank goodness for this site. I feel so alone; at times I spend all day crying. I had slight bleeding after BMs in Octotober 2011 and my GP referred me to a surgeon, muttering about heamorroids (I am in UK). Then I had a lump that burst and I have been bleeding every day since then. The surgeon said it was a fistula and I had a seton placed in February 2012. It is still in situ and I bleed a lot every day. I smell, I am uncomfortable and my clothing and bedding is always stained. I cant work as my job involves a great deal of driving. I have been listed for further surgery to repair the fistual but still waiting, and waiting and waiting. I cant afford private healthcare. No one seems to understand. I appreciate that it is not life threatening, but I have no quality of life at all. My doctors just shrug and tell me that it is a resource issue.

    • Hi Carrie, so sorry to hear you’re going through this. EVeryone on here understands how horrible it is!! If you need to work/drive, you should get a donut pillow – I used those when driving and it made a huge difference.
      So you’ve had a seton in place for a year now?? The same seton?? Has it been changed or have you had an operation since Feb 2012?
      It sounds to me like you’re not healing at all, if you haven’t had any improvement in a year, then you need to make some lifestyle changes and try to get your fistula healed (dried up) so that they can do further surgery to close the fistula and remove your seton.
      Are you keeping infection under control by always keeping the area clean? Have you put yourself on a special diet? Are you taking multi vitamins and protein supplements? Are you doing light exercise keep yourself active and healthy?
      I wasn’t healing at all until I took control and made some massive life changes. As soon as I started to get myself into top form, my fistulas starting to heal and infection went away.
      I know how hard it is to deal with this, but it really is up to you to take control (if you haven’t already). And hound the doctors until they give you an answer, don’t put up with them shrugging you off. Just because you’re not paying for private healthcare, doesn’t mean you shouldn’t get all the answers and advice you need – ask loads of questions and arm yourself with the information you need to get better.

    • Hi carrie, I to am from the( u.k )I had a seton from june 12 and had it removed on 7 jan 13.Same As you i had the leaking and smell all day i also drive for a living and havent worked since june 12. I went in for day surgery on 7 jan 13 ,as i have a complex fistula i was told that the surgeon could not cut to much sphincter muscle away as it would cause incontinence .After the op i asked what i had done and they said they removed seton and cleaned tract with prob cut away some of my sphincter and laid open fistula (which is a cut about 1/2 inch long)to let it heal from inside out.
      As of now a week after ,it is still leaking pus and bleeding (but this is to be expected)The one BIG problem is when passing motion the pain is unbearable which last for about 15 mins then its just saw again which i can cope with.If you end up having surgery make sure you use laxatives and ask for strong pain killer and make sure you take them before you need to go toilet ,then you wont be in to much pain ,i am glad to get rid of seton and hopefully fistula will heal and not return again .I have a follow up to see surgeon on april 13 hopefully i will be back to work by then as my wages stopped in oct 12 and need to get earning again .Dont worry as operation isnt to bad .Good luck

    • HI Carrie.soo know how u feel. so happy to have found this website, i have been dealing with an abcess turned fistula for the last 10 mts and feel its never ending, ive had 3 ops in total,2 incision and drainage and eventually after much screaming and shouting i got the docs to give me mri which showed a fistula, im greatful it was not high up and the surgeon has cut through fistula and layed it open,my major upset is all the packing, i had both incisions packed daily and now this very deep opening packed, the pain is immence and i feel so down as my hubby and 3 kids just havent had fun bubbly me in a long time and i know their so worried. i feel guilty because i know people are dying of starvation and cancer every day but i find this so hard and there seems to be no light at the end of the “tunnelll” pardon the pun..sooo fed up of the pain, hope yur ok carrie and it healed for u..fellow bum sufferer…ber/

  63. Thank you both for your replies. Yes I have had the seton since Feb 2012. I keep the area clean by showering twice a day and after BMs. I do not think I have any infection. I walk everywhere (when I am not sore)- but I have a permanent soreness between my buttocks and also often in my labia. I take a high fibre diet because I am worried about getting constipated. I cant sit on a donut when I drive- because my legs are so short, I cant reach the pedals if I do this !! If I did not laugh I would cry…..(more)

  64. I can’t drive with my donut either and I’m nearly 6 feet tall! It makes me wobble and I don’t feel safe. Yes I’ve tried different inflation etc, I use one of my old flattened couch cushions instead, worth a try ;)
    The SC diet is the go, I feel better every day, and so far no infection! Just starting to re-activate my life outside of home, so good to feel a bit normal again.

    • I haven’t tried sitting on a donut yet, but I found that my horseshoe shaped breast feeding pillow works really well for me.

      I also, thanks to meg68, am on the SC Diet. I bought the book and have been following it for 4 days now and my digestion feels way better. I have no nausea or diarrhea and the pain has lessened. So far so good! It’s pretty easy to follow too.

      I’m possibly on the road to a bowel resection and a colostomy. I’ll find out the plan of action on Jan 29th. I just want to heal. My husband and I would love to have another child so I have to get better. I don’t want to get my hopes up because I’ve been dealing with this for 16 years and 10 surgeries now:( some days I feel more optimistic than others. I just want the Surgeon to cut away the diseased part of the bowel and get on with healing. Has anyone here had this done or heard of this being done with success?

      • Hi Jenn,

        My friend had perianal crohns disease,had 15 abscesses drained,then they found it was in the small part of the bowel and they did a bowel resection on her back in 1998,she needed a colostomy,temporary pouch,for 3 years she had the bag,because there was 5 tests she had to pass before they reconnected the 2 parts of the bowel.The bag was removed and now it is 2013 and she has no recurring crohns perianal disease……amazing!!!thought l would share this with you.She has been an angel to me,helping cope with this disease as well as this site.Oh by the way she was able to get pregnant again with her second child.I wish you well in whatever you desc
        ide to do.

        Ren755

      • Hi all, does anybody know about the after surgery of the fistula plug? I currently have the none cutting seton but it hasn’t worked & I’ve had so many problems & a infection. Don’t know much about it.
        Thanks

      • Hi Toni
        I had the fistula plug surgery a couple of months ago after 6 months with the non cutting seton. I’ve been updating my progress in the Share/Ask section of this blog.

  65. I’am so glad to hear you are doing well Meg!!!It really is nice to feel abit normal!!! I know that feeling,best of luck to you!!
    Ren755

    • Thanks Ren, it’s really nice to have the support of not only my family and friends, but all of you people who KNOW how it feels!!!
      I visited my surgeon for post op on Friday and was very surprised to hear that I actually had another infection!
      The pain, swelling and drainage was so minimal compared to before the SC diet, that I thought I was fine.
      Oh well, another round of antibiotics…At least this time I’m in control of how I feel. I have days now when I don’t need my pain killers, and the bath is good enough!
      I cannot stress how important it is to eat well, (SC) rest enough and drink heaps of water.
      I still can’t eat meat, I don’t know why, but every time I try a little meat of any kind, I get really bad cramps and the runs. I’m having a gut analysis, (costly, but not compared to specialists), to try and find out why I got so sick in the first place. This will tell me of any food allergies or sensitivities I may not be aware of, plus will provide the information necessary to balance my system after all these weeks of medication. I’ll keep u posted.
      My surgeon thinks I may have another tract that hasn’t been dealt with surgically yet, hence the 2 weekly infections. A month ago this news would have plummeted me into depression, but now that I feel I have control back, and my pain is receding, I can handle that.
      Two setons is better than cancer or losing the ability to walk or speak. That’s the way I’ve learned to look at this problem. Each day is another step forward on the road to complete recovery.
      Thanks for making me feel so good, so glad I was able to help someone, because that in turn helps me!
      Stay positive, and good luck to you as well. :)

  66. Hi there,
    Had advancement flap done 11 days ago, on day 7 had BM and LOTS of blood came gushing out like a cup of it (like in the movie the shinning when the elevator doors open, ok lol not quite that bad but it was scary) next morning no blood did phone the hospital and talk to a CR registrar but he didn’t tell me much. Hesitated going to ER because i am going through public and would rather wait to see the surgeon in a weeks time at follow up appt. who is the top guy here who i lucked out in getting, very confused as to wether flap is working the pus did stop on day 8 so i think that is a good sign. I feel for everyone who can’t work because of these bum issues, am in the same boat, but it could be worse :-)

    Linda

  67. My doctor has put 3 setons in place and is getting ready to cut from one to the other and leave 1 seton in place. I know that it will be packed but is there an average time frame that the healing takes? I am wanting to know so I will know how long I will be off of work. Thank you, Carolyn

  68. Carolyn, take as long as u can afford off work, I did and it really paid off, I used up all my sick leave and then a few weeks of annual leave, but boy did I do better for it. U need to really concentrate on your diet and lifestyle right now, make the changes u need to and get lots of rest. Buy a sitz bath, and use it!
    I read every single post on this site and took all the advice I could. These people know what they’re talking about. We can beat this thing only if we are healthy, inside and out!! Good luck. :)

    • Thanks for the info. I had the surgery in July of last year and am going to have the next surgery in March but for some reason this past week it has felt like I am sitting on a porcupine. I never had any pain from the original surgery but am now feeling pain. Has anyone else felt this and if so what helped? Also, I was too ashamed to ask my surgeon if it was ok to have sex. Does anyone know the answer to that?

      • LOL! I know just how u feel. My poor partner waited for a while! There are other ways of “slaying the snake” so to speak. Good on you for keeping it real :)

  69. I am a 68yr old male, in April 2008 i had a pereanul abcess, now waiting for my 12th op, ihad a Lift method in Sept 2012, not worked, now waiting for next op, dont know what they are going to do next, i,m very fit for my age, still fixing brick/stone [ am a bricklayer] however i am feeling the strain with this constant pain in my buttock, becoming more quick tempered etc, i have a horseshoe fistular and i realise its not easy to cure, however i do think i should recieve more contact from my Hospital, Your ideas welcome, thaks Pat

    • Hi Pat, am in limbo land it has been 3 weeks since advancement flap don’t know if it has worked and don’t know what the next step is (they love taking it in steps), my appointment to see the surgeon was 5th of march but i rang up today and changed it to 5th of feb and when i go in I am taking a note pad with all the questions that have been floating around in my head, my point is, don’t leave it up to them to contact you it is your body and they are meant to be there to help us so I don’t see the harm in being proactive and bugging them for answers.

      • Hi Linda, you are SO right!!! I have said this many many times on this website…. the surgeons are dealing with so many people that they don’t have the time to concentrate on your particular case, so you need to take the control yourself and constantly bug them, make more appointments, write down questions, ring them, make appointments every couple of weeks if you feel worried… do all of this until you are better.
        I had the Advancement flap surgery, and didn’t know that it had worked for about 3 months, so you probably have some more time to wait – they take a very long time to heal. They will be able to tell if the flap has ‘stuck’ or ‘taken’ after a few weeks, but you won’t know if it has fully healed or not for a longer time.
        In fact, I didn’t feel completely healed for about one year. My advancement flap was successful.
        And I was extremely vigilant when it came to hounding the doctors/surgeons and nurses until someone checked me and gave me an answer :)
        Good luck with your appointment! And please keep us updated with how your advancement flap has healed :)

    • Hi Pat, just an update, went to the surgeon and he said it looked like it was healing and I won’t need any further surgery (unless it breaks down in the next year or so) so after a month of not knowing if advancement flap is working apparently it is, now i can look for a job yippeee! what is the next step for you? I hope your not stuck with a
      seton.

      • Hi Linda, This must come as a complete relief, i,m sure you will be fine now, and yes working can actually make you feel better in yourself, not to hard though. I now have a op, date not until May though, its because of the demand this time of the year, older people taking up bed space, which they are entitled to, as always the case not enough money spent on our National Health, to much on wars etc, Please let me know at a much later date how you are getting on. Regards Paddy.

  70. Hi
    It looks like I have another abscess forming next to the seton – so does that mean another fistula? My Dr kept putting me off and off with the operation and now I have moved far from her area so I guess with the public system that will mean another year of waiting? What will happen if I have a seton and another fistula with an abscess in a different spot? I feel that the seton was a really bad thing for me from the start. I can’t have different antibiotics because I am breastfeeding and I can’t have an op because that might leave me incontinent. Do they put multiple setons in? at the moment I just have a lot of blood coming out – unusual I usually just have yellowish pus and quite a sore bottom that hurts when I break wind – the other side of the anus to where the seton comes out. I have been using wild oregano oil but now it just seems to be irritating the area and sitz baths don’t seem to be working as well as they did.
    Please help – my next specialist appointment isn’t for another 3 weeks but i might be in hospital before then …

  71. If you aren’t getting the treatment needed and you are in a lot of pain, why wouldn’t you go to hospital? I kept going into ER with my fistula, and was operated on next day both times. I am in Australia, where are you?
    I also have developed another abscess, and won’t hesitate to go to the ER again if my doctor can’t see me soon. Demand attention, you have a very important job to do in feeding and mothering your child!
    Good luck.

  72. thanks i might go to ER before this next abscess gets out of control

  73. Hi everyone,
    I have a bit of a dilemma – I had an abcess that developed into a fistula. It was really painful for awhile, but lately it has gotten better. It hurts when I excercise or carry my kids a lot, but that’s about it (but I still get discharge from it and I would say it can be uncomfortable, but not painful most of the time). I don’t think I have an underlying conditionI have a surgery scheduled for Feb 21 with a general surgeon. A couple things he has said have bothered me though – he said I could leave it and it may get better on it’s own; from what I’ve read that is almost never the case. And he said that there is almost never problems after the fistulectomy, also something I doubt. If it’s too high, I guess he’ll put in a seton. He said he’s done hundreds of these. I also have an appointment with a colorectal surgeon, but not until May, with surgery probably occurring sometime in the summer. The colorectal surgeon seems like he’d take me more seriously – I get a complete examination, something I’ve never had with the general surgeon. And if the surgery is complicated, he would have more experience. But on the other hand I just want to get it over with. What would you guys do? Go with the less experienced general surgeon and get it over with quickly or wait for the colorectal surgeon (I’m also scared it will get bad again before that)? I should add I’m only 34 and I am a stay at home mom with three kids under 5. My life is a lot of putting on snowsuits, taking them off, carrying the kids, laundry, driving etc. All stuff that’s hard to do with a sore bum. Thanks in advance for any help you can give me.

    • Hi Jenn. If I were you, I’d wait to see the Colorectal Surgeon, or I’d try to make an appointment with another colorectal surgeon for sooner than May. Personally, I don’t think that a general surgeon would have enough focused experience with fistulas. And because a lot of fistula surgery has less chance of working when done a second time, you’re best to not mess around, and go with a surgeon that is very experienced in that field, and knows exactly what they’re doing. I got 3 opinions from 3 Colorectal Surgeons before I had any surgery. It sounds like you have a lot on your plate, and everyone on this site knows how hard it is to do your every day things when you have a sore bum. Stay positive, and good luck, let us know how you get on :)

    • Hi Jenn, I would insist on a MRI scan before your op, if its a high fistular you need the very best Surgeon, i have a horseshoe fistular, pass ops include a seton, twice, a Plug, and the Lift method, now booked for March for another Seton, and then ? A good thing to do is to be on a high Fibre diet, with hectic life, rest is important. The fistular will not go away. My daughter only has one child [18months], i dont know how you cope, keep up to date on Google for any latest news on a Fistular. By the way i,m over here a city called Bath, England, keep positive.

  74. My MRI has just shown that I have a horse shoe shaped collection passing through and alongside my first fistula, which has a seton in place. Haven’t seen my surgeon yet, (this friday), why are horse shoe fistulas so hard to deal with?
    I’ve been ok with the idea of another seton, but balk at the idea of some of the other surgeries mentioned above!
    Paddy, why haven’t your fistulas healed do you think?

    • Hi Meg, a horseshoe shape fistular is difficult to operate on [high fistular] because the tract can go thro, the intershincteric muscle, my sugeon stated in a letter to me that, [ we are using compromise techniques to try and prevent incontinence] its possible that I and others may simply end up with a seton in place permanently. I am sure better methods will be developed soon, its not so bad for me but I feel for the younger generation who may have this problem, i have some info, you could try these websites here in the UK, http://www.rcsed.ac.uk or http://www.asgbi.org.uk Best of luck Paddy

  75. Thanks Paddy,
    Seems all I do these days is research? I’m getting used to the idea that perhaps my seton and perhaps another(?) will be longer term than I first thought, but I am determined to beat this thing through diet and good over all health.
    (Funnily enough my ex was a brickie who suffered from Hemorrhoids, I can’t imagine how you’ve kept up with your job through all this???)
    Off to research your sites now, thanks again, and good luck with your next op! Meg.

  76. Hi guys please help me,
    i have one fistula from december 2011 so it is almost more than one year now..it occurs because of perianal abscess
    I have done my check up to doctor many times
    and all have one answer for me *you need a surgery for this but we are not sure, there is chances of re-occurence*
    to be honest as it is near from anal so before i go for surgery i start fearing that if i lose control on my bowels then, so because of the fear i always drop the plan of surgery, and till now i have not gone through with any surgery on this case of fistula,
    so the thing i want to ask is this, i dont know how But fistula is automaticaly getting heald, i mean to say there is very little pus coming out from opening of fistula(its very little or may be no pus), or you can say there is no pus coming out, so infection is going away or what sign is this?
    The anti-biotics, gas, better digestion, all these medicines which doctor told me to take it, i started taking those medicines again after 1 year, because my fistula is automaticaly healing, does my infection is going away or fucking fistual will go forever?
    Please help me, i want this fucking shit go away from my body,
    my senses are saying that its going away from my body and i start having medicines to help more for healing it and now little pimple like mark left there on fistula openings are almost closed?
    Help my dear ones..? Is this going away or what?

    • Hi Shanky. First of all, remember that surgeons will do what they can to make sure your normal bowel function is not affected. If they think surgery will damage your sphincter muscles so much that you become incontinent, then they will try a different approach. Where abouts in the world are you?? You should be going to see a different surgeon to get a second opinion. If you have had a fistula for one year, and they still “don’t know what to do”, then I think you need to see a different surgeon!
      The only way you can tell if your fistula has closed up is by an MRI scan. Ask your surgeon for an MRI so you can see the severity of it. They should have already done an MRI and then assessed you for surgery. I think you need to start demanding better answers, these are all the questions you should be asking your surgeon.
      Sounds like you’re doing all the right things with your diet etc, make sure you’re also keeping the area very clean.
      I’m not a doctor, but from all the stories I’ve heard about fistulas, it’s rare that they would go away by themselves without surgery, but rather will just keep closing over and then reoccuring again and again.
      Good luck, let us know how you get on!

      • hi it seems like it is coming again LOL ,
        and my frnd i havent done any MRI or somthing like that, i had only medicines one year ago, and till now i havent done anything in that, well my frnd i’m from india and trying to do best thing for my self yup i too think that i should go for surgery, i have just checked two or three time to surgeons and they just tol after seeing in anal hole with the help of torch :P that you need a surgery for that, so you give me an option that should i go for sugery or wait for this shit to go away from my till my last breath, this is really annoying

      • and please tell me one more that can it really go after surgery ??? :( im really so upset from this
        this fucking fistula ruind my life from last 1year,
        please tell me can it really go after surgery

  77. Hi all, I’m looking for some support as I’m feeling so incredibly down. In April 2012 I had a very painful perianal abscess. I thought that I’d just got painful piles and kept soldiering on through the pain not realising what the real problem was. Eventually I went into A&E with the pain and the abscess was lanced that afternoon to drain the pus. I then had an infection in the wound and had to take strong antibiotics. After about 3 months a tiny pus filled spot stayed on the operation scar and refused to go away. I was given antibiotic cream, more antibiotic pills and had the area cauterised to try and seal it but to no avail. I was referred to a colorectal surgeon and on the 23rd January I had a seton put in place. Three days later I had a terribly painful infection and had to go back to A&E in the middle of the night to be treated. I was given more antibiotics as well as other pills to get rid of the infection. I thought the infection had gone but today I’m feeling really sore again and my flesh feels painful to touch but it’s not in the area of the original abscess – it’s now sore right between my legs and is painful to sit down. I’m going back to the docs today as I think it’s another infection. I’m starting to think that having the seton in place has made my problem worse. At least when I just had the spot I was never in much pain, it was just a nuisance as it leaked every so often. Now the seton feels tight, makes me sore when I walk too much and has ruined my sex life as it makes me so squeamish about that whole area now. I know I’m probably going to have this problem a long time but today I’m really struggling to cope with it mentally. I feel so angry that this is happening to me. I know it’s not cancer or something more serious but the infections could still lead to sepsis and this frightens me so much as my mum got sepsis and never fully recovered – she died 2 months later. How does everyone else keep there ‘chin up’ with this horrible illness? I feel that some doctors don’t take this very seriously and do tend to shrug you off with antibiotics too often. I’ve just taken 2 weeks off work and have to go back on Monday and I’m dreading the discomfort I’m going to be in. It’s not as if it’s an easy subject to bring up with workmates either – it’s a real suffer in silence problem. Sorry for my rant but today it has all completely got to me :(

    • Hi Caz, sorry to hear you’re not coping, it is such an awful thing to go through, and people don’t understand how hard it can be unless they’ve been through it themselves. You’re right, it’s not cancer, I guess everything is relative though, and it’s your life. I had setons in for 2 years, and I had infections every 6 months or so. I would be put on antibiotics each time I got an infection and it would go away. I found that when I completely changed my diet and lifestyle, the infections stayed away. I also took lots of supplements to get my immune system really strong, and got myself into top physical form. And that’s when I really started to get better… after 2 fistulas, 2 setons, 7 surgeries, and an Advancement flap, I’m now back to ‘normal’. I used to tell my work mates that I had “holes in my intestines”… I don’t know why, I was embarrassed to say I had fistulas, but that’s ok, you tell them whatever you want to tell them – it’s none of their business anyway. I had a donut pillow on my chair at my desk at work. I covered it with a pillow case so that it didn’t look like a donut pillow! These are all the little things that you do to get through it. Do whatever you need to do, nevermind everyone else. And get up and walk around every half an hour at work. You won’t get sepsis, don’t worry!!! The doctors would never let your infection go that far. You just need to stay on top of things, if you feel like something is wrong, or you’re experiencing a ‘new’ weird pain, get straight into the doctor for a check up. Find a doctor that is clued up about fistulas and understands your case fully. You will have many bumps in the road to recovery with fistulas. I did. I had something new wrong with my fistulas every 3 weeks or so, I’d march back into the doctors and demand an MRI :) Like I said, just do what you need to do to get better, and be strong and positive, and you’ll get there in the end :)
      As far as leaving your fistula – and not having the seton put in place – I doubt your fistula would have ever gone away. At least with a seton, you have the chance of everything draining properly, and drying up, so that you can be completely rid of it.
      Good luck, and keep us updated! :)

      • Hi there,

        I hope everyone is well and keeping there heads up high.
        You mentioned you changed your diet and took supplements. Could you possibly give me some info on that please! Thanks so much!
        Regards
        Stacey
        Sent from my BlackBerry® wireless device

    • Just wanted to give an update. I’ve just had a review of my fistula with my surgeon and I’m now feeling really positive. The seton that was put in in January was a cutting seton and has cut through about 1cm of flesh. The flesh behind the seton has healed up nicely so it’s all going in the right direction. My next surgery (in a couple of months time) will be to examine the fistula more closely while I’m under anaesthetic and the outcome will be either another cutting seton to bring the fistula even closer to the skin or to have the fistula laid open if it’s already close enough. The surgeon thinks he will only have to cut about 25% of the sphincter muscle and that it shouldn’t make me incontinent. All in all I feel really hopeful that by the end of the year I’ll be fistula free if the surgeries are a success. This is the first time I’ve felt really hopeful that I’ll finally be free of the fistula. I know things can go wrong but at the minute I’m enjoying the light at the end of the tunnel :)

  78. Does having a perianal fistula and an abscess affect giving birth naturally? Has anyone on here given birth with a perianal fistula? Mine won’t go away and I’m thinking of starting a family soon and I really want to avoid having a c-section… I don’t really trust doctors advice now-a-days, especially since they all want to perform a c-section cause giving birth is now a “business”… so I’d like to hear from peoples’ experiences directly. Thanks

    • Hi Jendel, I had two perianal fistulas and setons for 2 years, and then the advancement flap surgery, which was successful. I’m now pregnant, and was advised by my doctor and my surgeon to have a c section, so as not to risk any chance of putting pressure on my advancement flap. I’ve taken their professional advice on board and am having a c section. I would rather do that, than have ANY chance of a relapse of a fistula. At the end of the day, it’s up to you, I guess you need to make an educated decision, get a couple of opinions from different doctors. I would say that they will advice you to have a c section. I was told that the ‘downward pressure’ of childbirth could have negative effects. I personally don’t think there’s anything wrong with having a c section these days, in many cases, it’s the safer option for the mother and the baby. There are benefits and negatives to both ways of giving birth I guess! :) Good luck, and it’s great that you’re going to be starting a family soon! :)

    • I’ve had both natural births and a c section, and would advise you in this case to listen to your doctor.
      My first baby ripped me from vagina to anus.
      For 23 years, since his birth, I have suffered ongoing problems with pain from fissures, and painful scar tissue from the stitch up job.
      The doctors think this is probably the reason why my fistula developed, through infection in the fissure.
      So If I was pregnant today, and in this situation, it would be a c section, no problems!
      Congratulations on your pregnancy and impending birth! :)

      • Hi Meg, awesome advice from someone who has been through both! :) There is no way I would muck around with it and have a natural child birth. And you are right, the doctors wouldn’t advise a c section for the hell of it. Thanks for all your great helpful posts on this website too :)

      • Has anyone had a fistula close with the use of a combination of steroids and antibiotics? Has anyone had a small fistula close by ANY means? Hope, hope….

      • Not so sure about that one…Doctors want c-sections performed all the time “for the hell of it.” Plus, there are just as much complications with c-sections, if not more, than having a [healthy] natural birth. So eh… looking for anyone who gave birth naturally with a peri-anal fistula.

      • hi meg, just thought i would mention, i also gave birth to my first child and had a complete front to back tear……then my other 2 had c-sections. funnily enough last time i was in having a perianal abscess cut out and laid open i mentioned it to the surgeon, it occurred to me that maybe there was damage done to the muscles back then but the doctor assured me it couldnt possibly have been anything to do with that……interesting though hey? xx tina

  79. I’m freaking out right now and I don’t know what to do. I had my second fistula surgery last Wednsay (a week and a half ago) and just today I feel like I’m getting an new absces on the other side! I can’t go through that again. I just can’t. I’m not well enough to work, I suffer from extreme low self worth and can’t hold down a job anyway. I suffer from depression. I don’t know what to do! I cannot end up in the ER again. I just can’t.

    • Hi Mel, I used to freak out all the time thinking I had another abscess, or something else was wrong, I think it’s normal for you to feel like that, and be paranoid because of what you’ve been through. There could be nothing wrong, it could be an infection that they could clear up with antibiotics. But if it is another abscess, then you just need to work through it and be strong. Rather than fretting, worrying and wondering what is wrong, you need to just go and see your doctor as soon as possible. They should book you in for another MRI scan to see what is going on in there. Whatever happens, you’ll get through it, you just have to take it step by step, one day at a time, and try to remain positive. You will get through the other side and be healthy again. Believe me, there are many bumps in the road on the fistula journey!! It’s how you deal with them that matters. If you need surgery again, you just do what you have to do. I have many surgeries, and after 2 years of it, I got better. Are you on medication for your depression? What are you doing to build up your self worth?

      • Thanks for your reply. Thankfully it wasn’t another abscess . My original fistula is still draining though. I have my third seton surgery tomorrow. I am applying for jobs again and I am trying to arrange early morning counselling.

  80. Thanks for the reply. I was having a real down day on Friday but I’m feeling much more positive now. It’s good to hear a success story and that your fistula’s have now gone and you’re ok. That gives me a lot of hope that one day I’ll be through all this. I couldn’t find a success story anywhere on the Internet – it was all the horror stories of the surgeries. Is there anyway a page could be added to this website for ‘success stories – my fistula has now gone’? I don’t know about everyone else but I for one would love to hear from people who’ve got over this condition, what was the most successful surgery for them, how long it all took from start to finish…etc. It would certainly give a nice light at the end of a long dark tunnel (if you’ll pardon the pun lol) :)

    • Hi Caz, what an awesome idea! There are a few success stories on here, I guess it’s a matter of reading through everything which would take some time! I’ll set up a new page and ask those with success stories to add to it. Thanks for the great suggestion, and I’m glad you’re feeling more positive now! You will be up and down, hang in there!! :)

      • Hey Caz, a lot of us are in the same situation here, and I have read through all of these posts. I have taken all the advice I can, and still, I have an unsolved case that needs further surgery/surgeries??
        God knows its the hardest thing I’ve ever been through! (And I’ve been through some stuff!)
        I’ve just had a really down and depressed w/e myself, having found out last week that while I have been taking antibiotics, my fistula has been growing right around my rectum, like a vine…
        So now my worst nightmare is coming true!
        I really feel for u, and I hope u have some support from friends/family? Even though they can’t possibly know what you’re going through….
        We are here for u, and we know what it feels like :)

  81. Thank you so much for your support guys. I’m so glad I’ve found this website. Meg68 I really feel for you. I would be so upset if I was told what you’d been told. Sometimes it’s so difficult to keep going on as normal when you’re constantly at the doctors or in and out of A&E or off work because of the pain, not to mention being a mum and running around after kids as well. I guess we just all have to keep plodding on somehow. My next appointment is on 25th March which feels like ages away considering my surgery for the seton was on 23rd January. It’s already been infected once since the surgery and then two new sore lumps appeared right between my legs so now I’m on antibiotics to get rid of them. I’m praying they are nothing to do with the abscess and that it’s just a coincidence. Sigh :(

    • Thanks Caz, and you’re most welcome :) I’m doing it a bit tough pain wise this week, antibiotics versus infection!
      Going to Sydney to see a surgeon up there, hopefully will sort me out with a 2nd seton, (lucky me!)
      Yeah I freaked out a bit when I found out that things weren’t going as well as I thought, but what can u do?
      Keep up with your healthy diet, (I had a bit of a cheat on the w/e and paid for it), at least I know now that I simply CANNOT afford to eat grains or any bi-product of them, or sugar or meat now. As I’ve said before, pain is a great motivator!
      I hope your antibiotics sort out your lumps? It’s not where your lymph nodes are swollen from infection or glands, whatever? Sometimes my groin gets really sore either side when I have an infection. Good luck anyway. I know how relieved I was when I found this site.
      A great place to hear and tell the truth that the doctors don’t seem to share :)

  82. Hi Guys, I am a South African, and I must say that we happen to have quite an advanced medical profession. However not matter how good or how talented your surgeon is, the bottom line is the same – We has fellow sufferers endure discomfort levels and reach pain thresholds unknown to many. I went to my GP in December for a “leaking ass” for want of a better description. I was told it looks like a P A A with drainage. Take care to keep it clean and a course of antibiotics. 5 days ago I could not handle the pain and the leakage so, I went to the surgeons in the know. Booked in for a EUA (examination under anisthetic) and a fistula was section was removed. 5 days later I am extremely painful and fully constipated. I have the urge to pass stools but the minute the muscles become active, I have electric shock pains and I freeze. No passage for the stools. My advise would be maybe the bowels should be totally cleaned out at least 6 hours before the surgical intervention and keep away from foods that would require greater bowel activity, for at least a month after surgery. Suffering in silence and slowly gong into depression. Than god I have my post op visit on Tuesday the 19th Feb. I also thank god I found this site.

    • I agree with you,it seems the majority of us are dealing with this in silence,yet we can be vocal on this site,which makes life much better for all of us.I had the fibrin glue procedure done before xmas,,l srill remember the excructiating pain trying to have a bm for the first time,l feel for you and pray for all of us to heal and the pain to diminish.Best of luck to you.
      Ren

  83. I really think that I would go crazy without this site… It’s easy to feel like your alone with this problem and it can get you down, I’m currently waiting for my 5th procedure, my surgeon has deciced to take a month off the week I’m due in so more waiting round now… Does anyone feel drained of energy from having a fistula? or maybe I just feel emotionally drained from it all, I’m looking at loosing me job due to all this time off I’ve had, I’ve lost so much weight and all my confidence, even to go the shops because I’m constantly checking the back of my pants or jeans for wet stains, thanks for everyone who has posted, this is the only chance for to get all my feelings off m’y chest

    • Hi, to all, I had the plug op about 18months ago, it failed, also laying open, seton fitted and the lift op. on Fri next a seton fitted again.  As i said to Meg the daily dressings are a real pain, but you must take a painkiller a hour before the dressings are applied, my problems started in April 2008 [ a abcess]  and yes this problem makes your head swill with anger etc, because you cannot really help to stop the problem.  Yes you can Bathe or Shower after these ops, in fact you need to be extra clean after your ops, also before each daily dressing remove the old dressing in the bath/shower. I had a bedet fitted its very useful to keep extra clean. All the best to you all Paddy.

      ________________________________

  84. Hi all,
    Had a non cutting seton placed in October, caused me nothing but problems! Yesterday (21/02/13) I had the fistula plug surgery, woke up in extreme pain as expected. Just wondering if anybody knows the healing process? When can I have a bath and shower? I can’t even sit down at the moment. I’ve had this fistula for 4 years this year! It’s also in my spinachter muscle.
    Any help would be appreciated,
    Thanks

  85. Hi everyone… So my surgeon has suggested that he might do a lay open AND a Lift procedure at the same time. He won’t know until I am under anesthetic and so I won’t be consulted about it.
    From what I have read both seem to be mega painful procedures and I am getting really worried about how I’m going to feel waking up?
    Anyone got any advice on how to best prepare for these surgeries which will be happening in the first week of April?

    • Hi Meg, the laying open or the Lift ops are not that painful, the packing out of the hole left can be uncomfortable, takes about 3 weeks, daily. The wound needs to heal from the inside to outside, yes i have had both ops, i had a phone call Mon, going in for a Seton [again] to be fitted on Friday next, the NHS here in Bath UK, cannot cope with number of ops at the moment , so i,m off to a Private Clinic, see how the other half cope.  So i know you will be alright, keep taking some pain killers before each dressing is done , you will be ok, Paddy

      ________________________________

    • Hi Meg,

      I had the lay open done last year and out of the 10 procedures I’ve had done on my Fistula. It was the most painful by far. I went off my pain meds too fast and has a pain crisis that was awful. If I had of just kept taking them it would have been bearable. It took months to heal. Then the fistula came back a year later. So now I’m having an MRI and a seaton put back in before its laid open again. I think what went wrong was that I started eating normally again right away. This time I’ve been doing the SC Diet which is working wonders to control the inflammation and then after the laying open I will go on a liquid diet for a month just to give everything time to heal properly. I’ve been dealing with this for 16 years and the SC Diet is the only thing that’s made a drastic positive change. My fistula, even though its still there, has stopped leaking and healed on the outside. There is no inflammation and I feel normal again. I know it will build up in there and come back, but for now it’s good

      • Oh jenn!
        I just read Paddy and he says it wasn’t too bad, (I think he was trying a bit of positive psychology on me)…
        I can’t even imagine how this is going to feel, I did have a fissure laid open 23 years ago when my son was born and I woke from surgery screaming. That’s the picture I have in my head!!
        I am sticking faithfully to sc diet as well. I feel like I have changed my whole freaking life for this thing, and yet I’m still suffering, and when I hear that you have been like this for 16 years it makes me feel guilty for not coping better.
        My poor partner is really copping the brunt of this lately. Trying to cut down on opiate based pain killers, so suffering a bit more pain and blowing up more often. I regularly leave my work in tears…
        It helps SO MUCH to have this support here. I know that I’m not alone in my problem, as this is a very difficult one to talk about.
        Thanks so much, just for being there!!

    • Hi Meagan.

      Make sure the anethetist takes care of you so you won’t have any pain when you awake,as for the procedure you are going to have,l never had that done,so unfortunetly l can’t help you with that.I do want to wish you the best of luck and my prays are with you.

      Ren

      • Thank you Ren, I really think the world of you people, who would have thought I would find so much support from strangers?
        Your prayers are much appreciated :)
        I think I’ll ask for a spinal block, that seemed to work well the first op. I didn’t feel a thing for about 6 hours.
        Thanks again :)
        Meg.

    • hi meg im new to this site and feel like my angels sent it to me tonite as ive been so down, its true u have to go through this to understand the pain and loneliness it causes//not something you bring up over dinner, i am fellow sufferer for the past 10 mts and just 5 days ago had a 3rd op where i had the fistula laid open, yes its an ouch but i feel i can cope with the pain its just the packing that is a daily torture and which i have been getting since the very 1st incision all tho now there is such a big hole to be packed it takes forever, ive opted now for showers insread of the sitz baths jus to see if it will make a difference,i miss being the happy bubbly mum i used to be all tho my 3 kids are amazing i know they miss me 2.. i have a wonderfull supportive husband who has even done the packing as it needs it every day and in ireland everything shuts at wkends unless yur dying or dead! anyways just wanted to say good luck with op and ill let you know how this procedure goes and thankyou for yur great advice re diet etc..fellow bum sufferer..ber

      • Thanks Ber, very worried about how I’m going to cope. I have dreadful sphincter spasms and I don’t know how I’ll cope once the muscles are cut?
        My kids and partner are awesome too, but there must be a limit to how much they can cope with?
        Please let me know how u are going, I’m in half a mind to cancel the surgery and go alternative medicine with this. That’s how scared the surgery makes me.
        Meg..

  86. Thanks Paddy!!
    I am so worried, you would think I’d be tougher by now? You have made me feel a little better already.
    I’m concerned about the 6 hours of traveling I have in order to get home after hospital releases me. (Surgery is in Sydney) How’s that going to work? I can fly home, but it will be super expensive on our regional airline….
    Good luck at the private clinic, I’m sure you’ll enjoy the food and care a lot better… Let us know how you go?
    I’ll be thinking of you :)

  87. Hi I had my 3rd op yesterday 1.3.13 this was to put a seton in place so far I have had no pain just stinging, I don’t know if I am lucky or the painkillers are real good.
    I am so scared to go the the toilet tho, this petrifies me what should I expect please help I’d rather know so I’m prepared

    • Hi Claire, I didn’t think going to the toilet with a seton was too bad really. Make sure you take your painkillers well before, and hop into a nice bath after?
      My routine was toilet, quick shower (to clean up really well), and straight into the bath. It worked well for me. Good luck with the next few weeks, drink plenty of water and eat well and you’ll be okay.

      • Hi Claire,

        I found it more mentaly scary to have a movement with the seton in place. Once I got used to it, it was ok. Being really, really clean afterwards is super important. Making sure to drink lots of water and eat lots of fiber to keep things moving easily is really the key I think. You could try stool softeners to help with all that as well. Also chk out the SC Diet. It’s really helped the inflamation and made me a whole lot more comfortable.

    • Hi Claire, I to had a seton put in position on the same day, this was the 3rd seton op i had done, as you said the stingiing is the worse thin about the the op, I take Tramadell , it works . Going to the loo is not a real problem, you will get used to it. If you read this Meg, yes the Private Clinic was very good, a room to myself, Tv etc, plus a good meal afterwards, the same Consultant Surgeon performed the op as in the Natiional Health Service Hospital last time, now have to wait for 3 to 4 Months to see what he decides to do next time, Thank goodness I have a lovely 18 months old Grandaughter to give me a lift now and again, all the best Paddy.

      • Hey Paddy, great to hear that you had a “good” time in the private clinic. I think it’s funny that they are the same doctors in both public and private. Happens here in Australia too.
        Glad to hear you’re doing ok anyway.
        My stupid seton fell out last week, and now I’m in dire straits again, might need to visit the hospital for another one as soon as tonight or tomorrow the way I’m feeling, but staying positive until surgery in April…that’s when I’ll freak out I think :)

      • Thank you so much for your help.

        It keeps getting clogged during watery poop and I always have watery poop. I for as long as I remember have always had watery or occasionally constipation…never normal. Even with diet changes it went from one extreme to the other. I have the worst abdominal pains when my stomach is empty of food, like curled over in pain. Now I have this fistula thing, So I’m afraid to poop and I’m afraid to not eat because of the abdominal pains. Why is my body always going against me? :(

  88. I have had a fistuls for over 12 years, I am now suicedal . My Doctor keeps giving me creams and says it is to do with my crack, i had had a very poor quality of life for over twelve years and am now suideal where can i get help i really am a human being but because I am irish that does not apply in my doctors view.

    • Might be time to change Doctors don’t you think Noreen?
      Please don’t feel like nobody cares about you, we have all had days when we feel down and the pain is just too much. I hope you have enough strength left in you to go see another Doctor. Help is out there waiting…
      Where do you live by the way?

    • My son has had a fistula for years.but one thing that really helped him that no one mentions here was a wound vac pump. His fistula was quite large and (after years of dealing with it) he was on the pump for 6 weeks and it shrank to pin hole size. At least we no longer needed to pack it. It’s still there, although small (too small for surgery) and we are now going to have him start going in a hyperbaric chamber. The wound vac pump really changed his life for the better. Let me know what you think.

    • god marie u poor thing, i am irish to so do know bit about our med system(wat system) i have no clue wat your going through for twelve yrs but i do know the last 10 mts have been hell, it started with an abcess which i had 2 ops on with packing every day for months,soo painfull and at times would practically crawl home and cry for the day and wake up the nxt morn only to do it again! i eventually started screaming for an mri which i got and showed a fistula…its 5 days since my op and im back to packing every day and have a hole the size of the grand canyon nxt to my anus, everything hurts and my hubby and kids havent seen the real me in so long..but dont give up you must change that doctor immediately and walk into sorry crawl into a&e screaming blue murder..that doctor is a crack!! and hasnt a clue. my gp is great and very supportive and got me into to see the best corective surgeon in s ireland who did my surgery,,also gonna do the diets that everyone talks about on here..and try stay positive, i dont have medical insurance and your right it seems you have to be dying before someone will help,i rang the hospital every day for months begging to see the specialist..and my gp helped by emailing and calling…pls pls dont give up… START SHOUTING..and good luck..fellow bum sufferer.. ber

      • Surely she doesn’t live in Ireland. Why would she be getting poor treatment for being Irish by her own countrymen??

      • she didnt say but the system here is not great unless you have insurance or full med card, your just a number and you never see the same doc twice in the hospital, 10 mts of packing every day… killed me…I am irish and they are my countrymen?? but i know everyone has their own experience.. I hope and pray now that im getting sorted but you never know… fingers and everything x

  89. I cannot go through the packing again, so I made an appointment with my GP to get a pain injection before the first dressing, because the first one is always the worst in my opinion. Poor torture! I think it’s absolutely inhumane and barbaric to pack a wound like this when the patient is awake. The diphene and tramol don’t make any difference!
    Anyone else share my frustration?

    • Can someone recommend a specialist for fistula in ano @ NZ, preferrably in Auckland or Wellington. Pliz let me know…I’d like to make an appoinment.

    • Hi Mel, The first time i had this packing done i nearly hit the ceiling, i had to get to my local surgery, the Nurses were very good, in fact they would stop when the pain was to much for me, however the pain was as you said, i tried to grit my teeth as the packing material was put into the wound, i would sweat etc, i dont think they would give me a injection, i know this will probably not help you but because our family has had a Father and Daughter passed on from the big C, i try and stay positive and think perhaps as i will be 69yrs im May and apart from this horrible problem i feel healthy, the seton i had put in on the 1/3 is quite painful what i try and do is take the max pills i,m allowed, i do have a tot of Whisky before bed, over here in England the weather is total Crap, i cannot get out in the garden or go fishing, i cannot relax so this makes things even worse, But i am determined to be a winner with this problem, there its off my chest now, by the way i,m half Irish, hence the name, Bye Paddy

  90. Hi Mel. god i know how you feel its a freakin nightmare.. I find its torture as well and have been having the packing every day in between 3 ops for the last 10 months all tho so many people on here suffering for so long its scary, the 1st packing like you im terrified off and my poor sister was in hospital with me to witness it and fair play to her she googled like her life depended on it and found a forum that advised LIDOCAINE..OMG it was like night and day but I can only seem to get a hold of it in hospital for the first and second op, its a spray,, there are other types of it but lidocaine worked for me, i literally felt nothing…. if you can get a hold of it you ll be grand..good luck and let me know..ber ps: try breathing through it aswell, breath in and tell them pack it as you slowly breath out….helps me sometimes.. x

  91. Shit Mel,
    I’m starting to wonder about this whole lay open technique and whether I should stop reading this site for the fear it’s creating in me?
    Am I better off knowing?
    Am I really, considering the pain I am already in, better off opting for a life time seton? Or a cutting seton?
    This waiting for my April surgery is driving me insane. I am so scared, and reading your post above has only made me more afraid.
    So sorry for everything you’re going through, if only I could help you..
    Meg.

    • Hi Meg,
      How are you now,, I know its sooo hard but try not to stress, feel so sad for you..it was only on my third op with specialist that they went with laying it open, the packing has got easier this week and im seeing specialist this friday who will decide whats going on with it?, I dont know anymore, im afraid to hope incase I lead myself into dissapointment again ( but small part still hoping/praying) the hope is that the fistula will heal once laid open the wound is kept open to encourage wound to heal from inside-out, this did not happen first two incisions as fistula was feeding the open wounds….so I can see the logic in it if it works??..I shall post on Friday night with hopefully good news and very large glass of vino in hand!! and to everyone on this site may I say I think we are very brave people indeed who deserve to have a healthy body and thankyou all for just being on here.. only us really know what a bastard this thing is too live with..and dont give up Meg….xx

      • Hi Ber,
        Not giving up, I guess I’m just giving in to the inevitable. I have dreams, where I go to another place, visit my sister in another state, etc, and the fistula is gone! I am healthy. Then I wake up….
        Just goes to show how much this problem has invaded my entire mind? Even my subconscious wants me to be rid of the problem :)
        I will keep strong, as long as I have u all for support, but sometimes, I’ve got to admit, I just wish I could give up. The thought that this surgery may not heal me, that I will go through all this for nothing, makes my blood run cold.
        I am hoping for u to have a positive outcome on Friday? Best of luck to u, and thanks so much for your kind words, they really do make all the difference! xx

    • Hi Meg and anyone else reading..Well… specialist this mornin..waited near 3 hrs with baited breath and soo nervous..eventually assumed the “position” and “music to my ears” said he was very pleased with it, keep up the cleaning of the cavity (which i do 3 times a day with shower hose) and he ll see me in 3 months!!!! but best of all…stop packing! dear god I got so emotional I must have looked a right baby but i know every one on here would understand, I wanted to tell ye because i hope it gives everyone hope..Im not out of the woods yet and still on pain meds but this is the first time I feel someone knows what there doing,tg. my advice to everyone is try to get a surgeon specialist in this area, hose area as much as you can and just put simple sterile gause (very cheap in pharmacies) I also started the scd diet 2 wks ago(thankyou meg68) and got the book which is fairly extreme but I cut out bread, dairy and any processed food at all, I can see the difference allready but mostly bowel movements are easy and predictable which really does help keep your system clean,everyone knows that their are people worse off, my own brother still fighting a brain tumour the last year and is doin ok but my gp gave me very good advice, she said ” everyones pain/suffering of any kind is relavant and deserves to be heard” I think she s right so everyone dont give up..keep hassling doctors, specialists till you get the attention you deserve and are
      intiltled too…i pray and send lots of positive energy to all..thanks 4 listening…keep chatting..ber xx

      • So glad for you Ber!!
        Great news, lets hope this time it’s gone for good?
        Still freaking out here, April 5 is my surgery date, and I still feel like running away.. A Lift procedure AND a lay open are on the cards for me, as I have a high horseshoe tract and one that passes through both sphincter muscles :(
        Stupid bloody fistula!!
        I have a very good specialist and I’m hoping for a miracle, like one where the fistula vanishes without a trace. Ha ha.
        I use the gauze now, as it’s so much cheaper and cleaner than sanitary pads.
        Keep sending that positive energy my way?
        Thanks xx

      • Hi Meg, The success rate for the Lift method is very high, so i will keep my fingers crossed for you, the seton i had fitted on the 1st March has become very tender so will see the Doctor soon in case of a infection, there i was thinking everything was rosy, i think i need stronger painkillers, yes this problem is something what other people dont understand, i,m sure your op will be a great success and will be thinking of you on the 4th april, Paddy

      • aww meg..can hear i your mail how worried you are, your so like me and use houmour to mask a lot of your pain,, i hope and pray all will go go well for you and that that your angels will fly you through this (honestly im not mad : )) but angels have been a great strenth to me..long story..) ill b thinking of you on april 4th and sending lots of positive energy…its such a nightmare this aufull illness..mind u..xx
        Mel hope you get a hold of the lidocaine..dont mind what docs faces say their not the ones going through their ass being crocheted…..I used to say to the numerous packing nurses and docs and my poor husband “its like trying to get a shoe lace through a needle hole and that was first packing after incision/drainage !!” we do not imagine this pain.”.I read that this area is a very hard area for pain relief to reach near impossible actually because of the nerve endings…. which explains a lot really..so dont feel your complaining for nothing.. if only they new?..demand the lidocaine or some local anesthectic..do what u have 2..and take care..ber xx

  92. Just had a rectal flap surgery on Friday March 8th after having two setons in for 6 weeks. It was a quick procedure but I was in a lot of pain Friday night at home with the Percocet barely touching the pain and difficulty finding a comfortable position. The day after was much better although still painful. Now, the pain is less and manageable. The CRS intentionally wanted me to be constipated and not have a bowel movement for a few days. The first bowel movement was Monday and very painful. I had another one today (Tuesday) also painful but the Percocet works better now. I did a low fiber diet for a few days after surgery and now moved to high fiber. During the day I’m pretty comfortable overall but just taking it slow and resting at home and staying out of work for 2 weeks. I’ve heard that this procedure has a lower success rate so I want to do whatever I can to help improve the odds. It definitely hurts more than the draining setons but I’m glad to have those out. I was able to go on vacation with friends for my birthday before the setons came out. I swam and relaxed by the ocean and enjoyed the vacation then came back home for surgery. It’s been 6 months of dealing with these 2 fistulas so far. I hope this surgery works and I can get my life back! Sending lots of positive thoughts to everyone here for healing and positive outlooks even in the midst of pain and frustration with this health issue. It’s great to share our stories and experiences. Stay strong! Cheers! Tony :-)

  93. Hi Meg hope you are doing well sorry I didn’t reply sooner, I just had another surgery this week. I can’t really advise you what route to take, I’m not too clear on stuff myself. My surgeon hasn’t even explained what kind of seton I have ha. I had to have the area cut again and I’m having it packed for the next MONTH. It’s just a horrible situation that’s been ongoing since October… but it’s less painful this time because I have a stronger painkiller called Tylex. Unfortunately this is making me very drowsy, confused and worst off, nauseous and causing vomiting. I don’t really know what to do except take less of it and go through absolute agony.

    BER – Thanks for the advice about the lidocane spray. I’ll try get my hands on some but I don’t think my surgeon will agree to it. She thought I was being ridiculous getting a pain injection for the first packing. **sigh**

    They really don’t understand the pain of it unless they’ve been through it themselves do they?
    After my surgery, all they gave me was Paracetamol. Seriously, paracetamol?! Why not give me a bag of skittles. That would work just as well am I right?

    They really haven’t a clue what we are going through…

    • Poor Mel, bag of skittles, ha ha.
      I was really lucky to run into a locum who was filling in for my regular GP, who had suffered a severe rectal fissure after childbirth. Without her I would still be suffering from severe spasms each day. She was the one who put me on Endep 10, which has completely changed the level of pain I suffer each day. A win for team MEGS FISTULA!!
      She was so completely sympathetic as she KNEW how much pain I was in. (She was also a spasm sufferer.)

      Thank God for her is all I can say, but you are so right Mel, they have NO freaking idea how much pain we can suffer.
      Some of my workmates have asked me how it feels sometimes and I tell them to just pop a helicopter up their bum! LOL

      A lot of my friends who have asked me for details about the surgery I will be having are shocked at how barbaric it sounds. The say surely medical technology has progressed further than that?
      I admit it’s a question that haunts me from time to time. How can laying ones rectum open, be the “best” way of dealing with a fistula?
      My surgeon has told me he may have to cut through both my sphincter muscles and sew them back together. How the hell am I supposed to go to the toilet after that??
      I just cannot wrap my head around any of this, and I guess I’m just being shoved down the shute like a sheep, doing as I’m told?
      Hang in there Mel, there must be an end to this for us all somewhere??

  94. Iv just had my second seton stitch put in 5days ago (anal fistula)….this time after surgery i was feverish, cold sweats, bit of nausea, the lot! anyway bowel movements not near as bad as they where when i was first operated on..i was wondering, if anyone knows if i could go swimming? My freinds booked a spa day this week, steam room/sauna etc… Im afraid i cant go because im not really sure and my doctor doesnt seem to have a clue. :s

    • I was told I could swim in the ocean, but definitely not swim in public pools, and definitely not spa pools. Places like that, shared with other people, carry a lot of bacteria. If you have an open wound, and only had surgery a week ago, there’s no way you should be exposing yourself to bacteria and the possibility of getting an infection. If you get an infection, you could delay your chances of getting better. Stay away from the day spa, as annoying as that is, you need to be sensible :)

      • I just let mine drain. I’ve read numerous people’s stories about how surgery has gone bad and the fistula’s and abscesses come back. I’m not chancing surgery. I have a perianal abscess, that drains everyday, and I have no pain at all nothing like what others here are describing. I’m leaving mine alone. Seems like once you go get medical help it’s a never ending dependency on surgery and setons. I heard oil of oregano and olive leaf might help. I’ve just started taking some capsules in small doses, so no results yet. I don’t know if I have a fistula or not, but I assume I don’t since I’m not in pain. Oh yeah, I’ve had mine for 6 months… letting drain every single day… just tissue in between my cheeks and i’m set for my day lol!

      • I only just found out that mine was a fistula, have had it for over 4 years…
        That is 4 years of wadded toilet paper and stained undies. What ended up happening was that one end healed over and the pus just built up behind it, creating great egg sized lumps that were EXTREMELY painful! I do not recommend doing nothing.

  95. Hello I’m a 28 year old male from us I first realized something was wrong 3years ago when I first developed what I now know was a perinatal abscess that I left untreated and it ruptured after about 11 days I remember it distinctly because of the mind bending pain it then seemed two drain for a few months then gone but this past year two months ago I felt that familer pain again slowly growing over the course of three days but the fourth and fifth day after being unable to stand and not sleeping for two days because of the pain I couldn’t take it anymore and went to the er the first hospital sent me home with pain killers and said it would rupture on its own again so I drove to another er immediately because that sounded like bullshit and the thought of another hour of that intense pain was just depressing luckily the on duty er doc was a surgeon And was familer with my condition he cut it and instant relief he then packed with gauze and sent me home I visited him for a follow up 2weeks later and all seemed well drainage had slowed and no pain except for the medical bills that started to roll in due to my lack of health insurance anyway I was relieved but that was three months ago and drainage now continues daily some days worse than others and more when I’ll have a few almost involuntarily spasms in my rectum anyway my Q is I assume I have a fistula now but zero pain just a clear yellowish drainage and want to know if I just levee it be will it spread or get worse or if I can deal with the puss then should I just relax.

    • Hey Luke, gosh poor u, 3 yrs of it! I was like you for nearly a year with a discharge from the incision and that was after further ops 2..eventually an mri scan revealed location and size of fistula,it was not in spinter muscle so I went ahead with another surgery to have fistula cut and laid open just 2 wks ago..so far so good thank god and im finished with packing/dressing which was always most painful for me, reading through this forum tho someone suggested a pump that has shrunk her sons fistula to pin size?? worth maybe checking it out..best is to talk to specialist if you can as fistulas can get worse if just left.and for your own sanity best to get it sorted…best of luck and hope this helps some…this site is great for suppport and just to vent.. ber

  96. LUKE – Where is the drainage coming from if you don’t have a seton stictch? It sounds like you might have a fistula if your still draining 3 months later. If you don’t want more sugery, my advice is eat a couple of spoonfulls of high strength New Zeland Manuka Honey every day, and take daily epsom salt baths.

  97. Hi! So I spent all of last night reading all this stuff (thankyou so much for starting it by the way!!!). I just had a seton put in place 5 days ago, finding the whole experience very…interesting.Har har. I went running around all the chemists in town trying to find something called a ‘sitz bath’. Read about it online but no one seems to have heard of it? Seemed like a great way to soak the rather awkward area with saline solution to try and draw out the pus, but am trying tea tree oil instead. Just curious what else I could try? Want to make sure everything stays clean and NOT infected down there!!

    • haha,sorry howling at you looking for sitz baths!! I spent a year sitting my butt in salted hot water, it does clean the area but I found just recently what is working amonst a
      combiation of stuff is jus to hose with shower hose for a good few minutes and cover with clean gause (cheap in chemists) it just seems “cleaner” and if you can fit in a bath, some people use a dish or just sit yur butt in a bath..tea tree can be strong so be carefull..my doc always said salted baths but theres no real back up to the salt either..I dont have a seton but am recovering from fistula being cut and laid open..amazing how much better I feel and wound is healing inside out..healthy eating a major part of healing 2 so watching everything I eat..lots of fruit,veg, and comon sence..to be honest ill try anything and take all advice given to me to rid myself of this” thing”… my advice, hose area at least 3 times a day and bath before bed..

    • Hi Heather, just read your post about finding a sitz bath. I’m in the Uk and found something similar via Amazon called a portable bidet which seems to do the same job – here’s the link: http://www.amazon.co.uk/NRS-Healthcare-Portable-Personal-Toileting/dp/B006679MHS/ref=sr_1_2?ie=UTF8&qid=1364375533&sr=8-2

  98. By the way good luck and let us know how u doin? ber

    • HI ber,
      So two weeks later and how are you? Is the pain still bad?

      • Hey Meg,
        Almost afraid to say it but so far so good,no more packing so no more pain, wound healing nicely tg actually feel in myself so much better,infection free I think is the reason, the specialist knew what he was doing so all going accordin to plan, sooo happy..
        How are you? count down on now for your surgery..praying all will go well for you to,pls let me know how you get on as will be thinking of you, take care..ber

      • What type of specialist did you use? A colorectal surgeon? Glad to hear you are doing to well.

    • Eh, guess I gotta go find a dish to sit in

  99. Hi fellow bum sufferers, i had operation last week 18 march I had complex fistula but thank goodness i finally dealt with . For you guys out there feeling depress and no hope, pls remember we are not alone its not cancer or not able to walk or eat. We have to stay strong and hope for the best…. Good luck and Godbless all of us….. Best wishes, raquel 32yo female

  100. I have just undergone a fistula surgey and have a seton placed very painful and uncomfortable this is my second surgery in 2 years due to recurrence…well i wish to know just when i can start eating…its been 5 days and havent eaten anything for fear of pain….im wondering if the drugs are gonna work without food…need help

  101. Thanks jenn, mel and paddy sorry for the late reply, I must say you we’re all right it wasn’t as bad as I thought although I did pull on it ekkkkkkk the pain I’ve had 2 babies with no pain relief but tugging on that stitch wow I will never do again, so I’m 4 weeks into having this seaton and can honestly say I spoke to soon about the pain factor, I’ve been in such bad pain for weeks now done a 10 day course of antibiotics and have to take co-codamol with tramadol every single day befor I can even move I’m constantly woken up by pain when I move in the night and just don’t know what to do with myself I’m constantly showering/bathing so keep very clean and have compleatly cut out carbs since feb just want this over and it seems like my journey has only just begun :( but on the bright side I have another surgery for the 9th of may so not such a long wait xx

    • The pain definitely worsens significantly when infection there. I also have a seton in place and suffer reoccurring infections even though I manage my diet, keep the area really clean. Anyone any ideas about ingoing infections

  102. HI, I had fistula operation 7th of February, now there is little pain, but the wound is still there with a little bit of discharge. Is this normal? Does it take this long to heal totally?

    preet

    • Hi Clare, yes the pain from a seton is bad, the op no trouble, i am in some form of pain etc everyday, mines been in 4weeks also, next visit to see surgeon is not until June 3rd, i dont know what will happen next, i don,t want a seton in permanent, you did not mention what the next op will be, the idea of a seton is to rid us of the fistular, keep well meenwhile, a retired Doctor i know told me yogurts are good for you, worth a try, bye from a very cold england, Paddy. PS just forgot my 47th Wed, Anniversary.

      • Hi paddy, many congrats on ur anniversary, my next appointment is on the 9th of may so not to long now, my surgon has said the next step for me is hopefully a silicone plug but he has been very honest on the sucess stats being between 13-50% but ill try anything, i went to my gp yesterday who has now given me yet another course of antibiotics second lot since the op and i seem to be in a little less pain today so fingers crossed, but got to just stay positive i guess, have a good evening also from the bitter cold uk :( xx

  103. Heyo – off to Sydney for the big op (scheduled for Friday). I want you all to send positive vibes my way please and say a little prayer for me? Thanks all, hope everyone is doing well? :) Meg

  104. I’ve had a recurrent perinial abscess for 4 years now. The first time it occurred was 5 years ago, second came 7 months later, third came one year later, fourth time was June 2012 and fifth time was February of this year.
    Now I think it might be coming back again
    This is getting ridiculous I cannot keep dealing with this every other month. Please god find me a treatment to stop it from recurring so much? I’m military I go to school this has created many problems in the past 5 years it was orginally and abcess and by now I think it has become a fistula be cause it keeps reccueing in th same area (perianal)..is there a surgery that could cure this please!!! Like a seton cut, or keep it open let it continuely drain out. Remove the fistula or ceist?
    Please god help me I am so tired of feeling like crap all the time.

    Thank you,
    John Helffrich

    • Hi John,

      Can you tell me how you’re getting rid of all these abscesses you’ve been having? I’ve had one for 6 months and it won’t go away; possibly a fistula. But yours keep going away… is there anything you are doing to get rid of them?

      Jendel

    • hi john, god auful how you ve been left for so long without further investagation..ie. mri scan would tell if you have fistulas, if its not.. ingrown hair is a big factor along with diet, lots of sitz baths and keeping area super clean.. . seek medical help as much as you can and demand mri, I ve had a fistula cut and laid open and im still doing ok thank god, like you I had recurring absess for a year, wound is still healing 4 wks later and still discharge but not at all like it was pain etc. best of luck and dont feel alone, ber

  105. Woke up from anesthetic to the news that the lay open and lift surgery wasn’t able to be done as I am still in too much of an inflamed state.
    What a let down!!
    All the way to Sydney, all that fear and nerves only to come out of the operation with another bloody seton!!
    Dr said he’ll have another go in 6 weeks or so, but there is no point doing the Lift surgery if I’m still infected as it won’t work and I’ll just be worse off.
    So here we go again, another big wait.
    I guess I should be happy that I’m in such sensible hands, but I can’t help feeling that this could go on forever.
    I take such good care of myself!! I don’t know what else I can do to improve my chances of successful surgery?
    The Specialist also said that I’m not a candidate for the lay open surgery at all as my fistula runs too deeply through both sphincter muscles and it would leave me incontinent….massive sad face….
    At least, through this site, I have had fair warning of all the things that can and will go wrong.
    I’ll keep hoping, thanks for all your support. You guys are great xx

    • That SUCKS! You would’ve been hanging out to get the thing removed :( What happened to you is one of my fears.
      Best of luck for the next six weeks, hopefully you find some kick arse super food to put this infection in it’s place x

      • Heather was it you that mentioned the Manuka honey? I used that for my son’s eczema with fair results. What do you recommend? Just eating it daily?
        Thanks for the message, I’m hanging in there with a positive attitude because I don’t think any thing else will help? Hope u are doin ok too :)
        Meg xx

    • Oh S***…..
      Meg what a total dissapointment for you, how are you coping with this news now? but as you said it does sound like your in good hands and you sound such a strong person I just know this will work out for you soon, your on the right road and I pray you ll get there soon..your doing everything right Meg so dont blame yourself, its just a balls its taking this long, Im going mad for you I really am, thinking of you, stay strong..praying your Angels will guide you through this.. (whoever thought our butts would be such a disaster !! ; ))
      ber xx

      • Ha ha ha, “Disaster Butts”, coming to an operating theater near you……. sounds good to me. Let’s make a doco?
        Thanks Ber, you’re such a hoot. A good laugh is sometimes better than anything else isn’t it?
        I’ve got the tightest little seton this time, driving me mental with pain. A lot different to the last one which was nice and loose and didn’t pull and rub on my tender bits. Been using the gauze to try and shield things a bit, but I think I’m still a bit swollen.
        I’ll keep u informed as to how I’m getting on. xx

      • Oh God Meg your rightly goin through it..: ((
        Yep sometimes laughter is the best and a good old deserved cry aint bad either..we should all get together in some neutral part of the world… we could call it.. “bad asses unite” : )) No one would ever know except us that it is actually our butts!! ( they ll just think were bad asses!!)
        t-shirts,mugs,sitz baths! ok im getting very carried away here!!! haha..
        ps; I take the Manuka 10 + every day in cooled boiled water with some lemon every day..my motto try everything.. best of all think im healing.
        take care Meg,
        ber xx
        co founder: -B.A.U-

    • Hi Meg, very sorry about the position your in now, lets hope you can have the Lift op next, as it has a good success rate, i think you said before you had a Horseshoe shape fistular, same as me, thats why they keep trying these Setons, i have to wait tillthe 3rd June to see the Surgeon, i hope by then that you have had a successful op, this Seton is playing up a lot now but i,m sure we will all beat this dammed problem, Regards Paddy.

      • Good luck for the 3rd Paddy, I’ll be seeing my doc at the end of May, and I’m hoping for a chance at the Lift soon after. Until then this little sucker of a seton is going to make my life hell… any tips?
        Keep on smiling :) xx

      • Hi Meg, with your full on life i think you are doing well, i,m retired so it,s a bit easier, i have a much looser Seton than you have, but still painful, i do have a Ring i use now and again, like a thick sponge type of material , its OK. My sister-in-law has severe back problems, she has been on a course for Pain Mangerment, thats a laugh, I simply take the max, pills I can when I need them. The problem we all have with this illness is it,s allways painful, I believe that when possible to find a new hobby etc, get out a walk, visit places you have allways wanted to, I,m off to Wales in about a Months time, determened to walk maybe try my Cycle [ ha,ha] at least try to take my Mind off this. At the moment with the really Bad, Bad weather we have in England, I find a really Good bottle of Aus, wine very relaxing or maybe two bottles. Anyway I hope you and all sufferers keep your chin and fight, i,m sure we will win in the END. Best wish,s Paddy.

  106. Had an appointment with my surgeon today to check how I was finding the seton, no worries there. Still haven’t heard from the GI that I had been referred to so the Surgeon gave her a call and hopefully should hear from her over the next two weeks in regards to going on biological agents…Hemira..or something. What are peoples experiences with this?

  107. Has anyone ever just left their fistula alone? I’ve had mine for 12 years, and despite some irritation once in a while, I don’t have much problem. I’ve never even had a seton. I’ve been to a bunch of different CRS’s, and some say surgery, while others just don’t seem to care much. One, when I told him, immediately said surgery, but after he looked at it, he told me it’s very superficial, and that the risk for cancer is very, very low. So I don’t know. I would like to hear from someone else who’s left theirs alone for a long time. Thanks!

    • I had mine 10 yrs but I had a reoccurring abscess that I was told was a strained hamstring so I did nothing when it occurred. However I have now had 6 surgeries since oct and the doc says I have the most complex he has came across because I have had it so long. If you are not suffering with an abscess I would advise to leave it alone.

  108. hi
    I’m a retired senior Engineer, one night I had a very bad pain in my stomach that I could not sleep back in October 2010 my wife took me to a hospital and after the operation I came out with stoma and after 2 weeks an Enterocutaneous Fistula developed.unfortunately the Dr Back home in Iran could not help me with the healing or how to deal with such Fistula,and after 3 months I was dehydrated and Malnutrition and I was about to die.In January 2011 I had to come to Germany, City of Cologne where I stayed about 2 week in university hospital Uniklinik then sent me home and asked me to be on parenteral nutrition and allowed me to drink water,energy drink and tee only but no solid food.after about 10 weeks the Fistula Healed and I started eating.After 18 months of my first operation on 20 of April 2012 I came back to the same hospital and did the operation and removed the stoma ,my operation was successful but a similar Fistula developed from Bowel to the stomach skin at the middle of my stomach I thought this will heal very soon like first one but now its almost 11 months and still some fluid coming out of it , it healed about 3 or 4 times and reopened and started leaking again the Dr don’t want to do operation to remove it and insisting that it will heal but it will takes time they are saying .recent CT showed that fistula is at the end of the small bowel and very much close to the large bowel.I’m now taking liquid soup,energy drink,Yoghurt plus other very soft food.can any body help me please to tell me what to do and how long can I stay with this fistula any implication on my health.I have no medical insurance because I was working in UAECB and I send home due to Iran/uae problem .I request your help and advice please

  109. what is the differences between anal fistula and enterocutaneous fistula and which one is easier and quiker to be treated and can Dr. use seton method to treat the Enterocutaneous fistula,I request you to tell me please

  110. In July 2011 I married the man of my dreams….a month after are honeymoon I had a very odd pimple/blister develop between my Vagina and rectum. Which has now been dx as a very complicated rectal/vaganal fistural. And this is when the nighmare begain. At this point I have had three surgeries. First was by obgyn who though she was removing a cyst but found no cyst but instead a tube (dec2011) . Second was by my colon/rectal surgeon who put a Seton in. This was horrible more pain then before it was placed. After a colonoscopy in may 2012 a second option from another surgeon it was decided my fistural had branched off and a flap surgury should be tried. So sept 2012 this would tried. Yesterday it was decided this has failed. I still have a area that will not heal and increase pain has done multiple courses of antibiotics no results. Plan now is to go into surgury may 2nd and try another seton placement to try to calm down the area.

    After looking at this blog i am wondering about some of the diet options. To help. They have determine I do not have chons or ibs. I have not given birth. So the best answers my doctors can give me is I don’t know why. I have been trying to be better about exercising meeting with a trainer two times per weeks who has a strong women’s health back around and walking or running one to two times per week.

    My husband has been wicked supported but the idea of having more surges in the girly area make me not feel very attractive. My other question has any females found anything that that makes sexual intercourse more comfortable? I am 31 years old and less then two years married we should be having kids not multiple surgeries that are just making not wanting my husband to touch me.

    I am feeling a bit hopeless and discouraged at the moment any advice welcome. I do try to remind myself things could be worst. My surgeon yesterday promised me she would heal this pest at some point but could not tell me when.

    • Hi Rachael, gosh your having a bad time of it, these things are such a nightmare as reading this site proves, I think the diet is just to help with healing and keeping bad foods out of your system, I found cutting out carbs and dairy as much as possible helps, lots of fruit and veg, I tried the SCD diet tough(got the book) but I have to say my health has improved and I am so far on the mend after have 3 ops the last 1 being fistula cut and laid open.( same position as yours by the way and so very akward for any type of intimacy but dont stop trying) look for alternative medicine to boost your imune system, go to the health shops etc. above all do not give up as you said it could be worse but at the end of the day pain is pain..Im sure your husband would not agree about not being attractive and he sounds very supportive so try other ways to keep intimacy in your relationship….stay positive and I send positive thoughts and prayers to you and hope everyone will heal eventually..this site is great as you know everyone can relate to what your going through, good luck Ber..

      • Hey Ber!!!
        So how’s your disaster butt this week?
        I’m in hell, this pokey little piece of plastic on my seton is stabbing into me and hiiting a nerve, sending pain down the back of my right leg. Aaaargh. It’s so tight that I can barely move it to relieve myself of this little spike of plastic. And the knotted bit is half up my Khyber!! It’s driving me wild.
        I’ve tried to position it better but as I said, it’s too tight to do much with….
        I’ve made an appt. to see my GP, to see if she can do some “craft” with it??
        Anyone else got any ideas?
        Disaster Butts United,
        Meg!! :)

      • I had the same problem and my surgeon just cut the bit that was rubbing, during a check up.

      • Hey Meg, Jesus that sounds horendous! I thank God I never had a seton as they do have a serious “ouch” attached and seems as baberic as packing wound every day….Im doin ok, major break out of the diet last week as my daughters confermation so lots of fast food when running about and then boose, cake etc.(couldnt help myself!!) at the after party we had.. and I have to say my disaster butt is suffering! ! I can just feel my system is not cleaned out properly and do feel that plays a big part in healing as I think any bad bacteria hanging about inside hinders and inflams the wound….. big sigh! such a shame as I do like my vino :)) the scd diet says you could have vodka and sodas when you feel good but dear Jesus I can just see the kids and hubbies faces with their Mother lowering back the vodkas of a night…:))haha so ill just have to be good untill this fecker heals. on that note do think you should see the doc/surgeon about how tight it is? doesnt seem right to be so uncomfortable and in pain as sandcastle mentioned to maybe have it cut? dont know how your managing with it? as always send prayers and positive healing to you and everyone on here…take care, ber x

  111. Please look at the Specific Carbohydrate Diet, this has helped so many sufferers, and it’s not hard really, it eliminates all the junk food from our systems. Here’s the link:

    http://www.breakingtheviciouscycle.info/home/

    Your surgeon is probably waiting for the inflammation to go away before she does surgery, as it will not work if there is inflammation.
    This has just happened to me, so I know exactly how you feel. I have to wait another 6 weeks, and even then it may not happen.
    We all just want to be better again, patience is the key here.
    Sticking to the diet 100% really helps with pain and discharge. My whole family are now eating this way, and we are all so much healthier for not eating processed foods!
    I feel so sorry for you, but this problem shouldn’t stop you from living a full life, have a very warm epsom salt bath, to relax you and then try intimacy with your husband. The more you “tense up” the more it will hurt. Plus you could always deliver a baby through C-section, so pregnancy should be fine.
    Good luck Rachel, we are all in this together :)

    • Yes the doctors have already told me I can do a c-section. But they will not support our choice to stop birth control until they know my fistual is stabilized so either healed or the seton in place without complications like the last one which tracked laterally off. They want to avoid general anasisa while pregnant. Deffently going to try the diet changes….and hope for better results this time around….thanks for the support

      • I’m hopeful that your diet will change the way u feel and help with healing as well. I really noticed a difference after being on it for a couple of weeks. Plus I really notice if I eat something bad. There is so much pain next few days!! Plus more inflammation.
        I also had a seton placed incorrectly which led to my fistula going crazy and it tracked of and curled into a horseshoe shape! It’s so frustrating when u don’t get good enough medical care isn’t it?
        I feel like I’m in good hands now with my surgeon, and I trust him.
        Best of luck to you.
        Meg. :)

  112. hi.im Artur.is that normal to be loosing so much weight with anal fistula?

  113. Thanks Ber and Sandcastle!
    I am going to see my GP this week about my pokey seton, see if she can do something with it, if not I guess it’s the E.R. at the hospital again.
    I can’t put up with this for another 5 weeks. My surgeon is a 6 hour drive away, so I can’t just go see him every time I have a problem :(
    And YES Ber, don’t u notice when u go off the diet???
    Meg :)

  114. I received my second kidney transplant in 2009 and i haven’t use my fistula since. But for some reason in the last two weeks ( it’s April 2013) the fistula has been throbbing so much to the point that I start crying. What could be the cause of this and does anyone have any suggestions?

  115. I have been dealing with fistula since 11-until the current time. I have had 2surgeries.I wonder if they will ever heel.

  116. hi i m suffering from fistula from last 5 year i started homeopathy from last 2 year now i have nt pain but fistula s still there can fistula curable through homeopathy what i do now plz suggest me??????????????

  117. Hi, I am from India and I really some help on this. I’m suffering from Anal Fistula and also underwent an surgery lately for an Abscess. I know, I need to undergo an surgery for relief.

    My financial situation is bad and I just recently managed to get a new job. I cannot afford to leave this job and neither do I have enough funds to undergo any surgery. Can someone please tell me if it is okay to bear this for a month at least until I get my first pay-check. Is it okay to take medicines for a month.

    Please help me.
    -Bibiana

    • Well Bibiana have your access busted yet? Did you also say that you have had surgery already in the same area?
      When mine first occurred I couldn’t deal with it. My butt was full of inflammation. And then one day it burst on its on. My doctors thought that I were having hemorrhoid problems until they finally decided to send me to a gastrologist if I spelled that right. If its unbearable you hadn’t to do what you have to do. You can’t work like that. Good luck. I’ll be praying for you. :)

  118. Thank you Craig. I’ve been bearing this for a while now but, I’m not sure how worse this could possibly get.

    The surgery I underwent was only for an Abscess near my genital area. Fistula was not diagnosed at all that time, I wish it was.

    Please let me know any information, if anyone thinks I need to know about this. God bless you all & thank you so much for your reply.

    -Bibiana

  119. hi folk., im kinda scared about this fistula on ano thing but when I met you guy im in a little relief now, im 24 yrs old and the doc said that MAYBE I have this fistula on anus, it start when my butt cheek the right side swollen and very painfull its almost the size of prunes then last april 22 im undergo for a operation like draining or whatsoever, it hurts like hell when its cleaning time, they remain the cut opening open the insert a catetter then pump it with a combination of sodium choride bleach and hydrogen peroxide, then plug the opening of the cut a gauze soak in peroxide its my first day after the operation and comes back after 10 days, sorry for my english

  120. its my 2nd day, god its like human torture when cleaning time -sob
    I want to know sir if its normal when a going to poof and wash it the side of my anus hurt? and when I wipe with tissue it have a red spot like blood?

  121. I am waiting to see the consultant for the first time this Wednesday coming. After reading your symptoms I’m now wondering if I have a fistula. Not all the time but I’m getting the discharge you would get from your back end through the vaginia and back pains. That I can deal with but what I’m finding I get tired so easily. My eyelids are always heavy with sleep and feeling cold. Yesterday 3 jumpers and the heating on and I still couldn’t get warm. Are these also symptoms. I know you can have general feeling of unwell but this is silly. Suppose also up to now I’ve never been ill and have done 8 years of work without a day off sick. You guys seem to know what your talking about. When I went to see my doctor he listened toy symptoms but didn’t examine me so still clueless until weds. Any ideas would be welcome.

  122. no i haven’t, but in the main i am always cold and shivering. which is the opposite of what i was before i started to have any symptoms

  123. Hi I have a fistula it started in 2008 The fistula started in my abdomen it made a hole right trow my vagina and my bladder then my bowl. back then they wouldn’t do surgery it was to risky. After i took remacade the hole closed up then i was allegic to the medicine then they gave me humira. I was on it for 2 years i had to stop because of allergy to it. So when I stop in october 2012 then 2 holes open up again I’m back on hurima but its not working. Now they want to do surgery. Should I do the surgery when there a chance I could die from the surgery?

    • Well the Fistulatomy it’s the actual surgery. And to clarify things. Mine is in the anal area. I’m just waiting for it to stop discharging. Its been doing that for about a year or more. I feel like the lady with the issue of blood from the Bible. I really don’t want to be cut on anymore. Both times were rough. I try to keep myself as clean as possible and I pray and trust that God will heal me.

  124. I hate how frustrating this stupid thing is….really hoping the discomfort that is starting today is just some of the area trying to heal. I had three days of no pain following the seton placement. On Thursday….hears hoping returning to work tomorrow is ok….I hate worrying about pain….

    • Poor Rachel, it is frustrating isn’t it? I never know what sort of day I’m going to have.
      I have a little make up purse that I take to work. I call it my “bum bag” and in it I keep various levels of pain relief, a wash cloth, a zip lock bag of sterile gauze, and a small pack of antibacterial wipes. It helps to be organized.
      Good luck with returning to work Rachel, sending good vibes your way!

      • Well day one went better then last time I had the seton placed returning to work…trying so hard to keep low key and not over do things. My work has never heard me say no as offen as they have the past two weeks. my schedual asked when i will be healed so he can have the workaholic back. I do have a bum bag too. Hardest thing for me is that I am a home health occupational therapist which means random public bathrooms which always gives me anxiety to use….just too much open area down there. And with trying to increase my fluids to prevent constipation issues and not get dehydrated with the stool softens means extra stops for the bathroom,…oh we’ll ill get through it like I said day one went well and have been able to just use Ibprophine and tylonal

  125. how do u give moral suport to a boyfriend with anal fistula.he does not want me to see him

    • He will need alot of reassurance but do it sensitively as to much can appear fake. Be urself that is so important. Cook healthy meals, not too much fibre aand LISTEN.

    • Beatrice….you reassure him, you listen, and provide comfort, when he s ready he will let you know. I have been dealing with my fistural for a year and a half, it’s hard emotionally to let my husband see the area, I don’t feel desirable. My husband has found a way to let me know I am still pretty and he still loves me. By using words and just normal touch (with clothing on). I still struggle with intercourse (I have ad 4 surgeries this past year in that area) but he has been patient and tryed to suggest other ways for us to be close.

      I know for me it helped when he stared to go to my crs appointments and she would explain the situation to both of us. He was able to ask question to her and not to me which helped. It allowed me to also start to see its just a medical thing. By my third surgury my husband was doing all my wound care for me and now with my most recent surgury last week where I had a seton placed its a joking matter for us about my new pricing.

      Give him time, let him bring up the situation, and just love him

  126. Pls try the Kshar Sutra ayurvedic method which gives little pain and 100percent results.

  127. Hi guys, very helpful site by the way – I’ve been diagnosed with a high position fistula – had first abscess last year, was drained etc and then came back recently so had more scans and they said will need the lay-open op which I’m pretty stressed about as it’s so invasive (only one doc’s opinion so far). Through a strange twist of circumstances I’ve come across something about a fistula procedure which I’ve not read about anywhere, called HCPT — thing is it only seems to be on Chinese hospital websites. I am British but I live in Beijing for work so I’m facing up to having to have the surgery here which is less than ideal (horrible prospect really). This is also how I found out about this procedure because I told my Chinese girlfriend about the lay open op and she did some online searching for me in Chinese. This new procedure sounds very high tech (almost too good to be true!?) and I wonder if anyone has heard of it / experienced it? Here’s a link but the English is bad (what we call Chinglish):

    http://www.hewiki.com/view/2823677.htm

    But don’t be put off by the bad English – I’ve found the procedure listed on some specialist anorectal hospitals in Beijing too, like this one (tip: if you look at it through Google Chrome it will auto translate):

    http://www.120gcw.com/fy/zt/gldzzjzjzlff/

    So anyway, I’ve got 3 days before I say yes to my bed reserved for op on Tuesday… Hope to hear some replies! Thanks x

  128. I have just had my 17th lot of surgery over a three year period. I had two setons for about 6 months nearly 3 years ago. One side has healed, but the other side will not go away. I had another seton inserted 6 months ago.

    I carry all the stuff you referred to in my briefcase, to cope with the physical aspects, but how do you handle the mental state, specially when pain gets unbearable. Does it affect your relationships with your loved ones. I have tried meditation, positive thinking, exercise, good eating habits. I have even tried getting off booze, but some days it gets too much.

    Any advice on how to cope will be appreciated.

    Thanks

    Mike

    • Mikepayoe, I hear you on the mental side of things. It’s what I struggle with the most. I am going on a year and a half now and 4 surgeries. With my last seton placed about two weeks ago. I know for me it has placed some strain on my marriage despite having a very supportive husband. (I was dx with my fistural about a month after we got married). We try to just take one day at a time. My husband try’s to go to each crs appointment as possible which for me helps. This way he an understand what’s happening and ask the doc questions.

      I struggle with getting people to understand the pain and not being able to control all the time or know what will work. So many people say its not life threatening so it can’t be that bad.

      For pain have you tried Ativan it is a anti anxiety medication normally but my doctor has been prescribing for pain to help decrease spams and thus decrease pain. I had great luck with this medication. Also for me the gluten and dairy free has been a big help. It took a couple
      of weeks to feel the effects but now I know when I ate something I should not.

      My crs always says if you have pain with a seton something is wrong….make sure doctor is monitoring correctly. My first seton was wicked pain full and was cause my fistural had tracked off. Took them a while to figure out what to do but in 6 months they had it out. Tried a flap repair which fail. And thus I have my new seton in. So far pain has been better.

      Hang in there and talk with your love ones be honest with them, try to help them understand what’s going on. That way when you are having a bad day they don’t think it’s because of them.

    • Hey mike,its actually sad to hear that you have had so many lots of surgeries.It does affect mental state but we have to have a strong will to come out of it.I just had 1 surgery two months back and only i kno that wat was my mental state but i always believed that it will get over and now i am 95 percent healed.its just beacuse of ayurvedic method called Kshar Sutra.Please search on Internet about it and undergo.its the only cure for returning fistulas.

      • Hi. M also suffering from fistula. Can you tell me about kshar sutra ayurvedic treatment center, where you have done your surgery..

      • Hi Nishant,
        Good to hear that u have recovered from it..can you please advice me the center from where your surgery have been done….

    • MIke! I know just how you feel. Unfortunately even with the best support in the world, we sometimes feel like we are all alone in this.
      My relationship has suffered a bit due to my being cranky and frustrated, but I make sure to sit down with him, (my partner), at least once a week and tell him I’m sorry and explain what kind of pain makes me act this way.
      I have good days and bad days, and sometimes I’m so sick of it all!!
      The worst part is that after 7 months it is still the same for me. I’m still in pain, still need operations, still need comfort. But my family have moved on from there and I think sometimes they forget I’m still STUCK in this process.
      Of course they comfort me when I need it, but it’s not on the same level as it was in the beginning. They don’t seem to understand that although I’m smiling and carrying on with my life happily right now, underneath all that is a daily struggle just to get out of bed and start ANOTHER day of this shite.
      I feel for you. Communication seems to be the key, just keep telling them you love them and you need them. That you couldn’t do this without them.
      Hugs.

      • Meg I think you just did a wonderful job explaining the hell of the world of fistural…it’s easy to cover with a smile….really like this page. Has been a big help for me to hear everyone’s story and know I am not crazy :)

      • Meg, Thanks for all the encouragement. I do try sit down have a conversation about the level of pain. I also try and fill up every minute of every day with as many things I can fit in, just to take my
        mind off the pain, But, there are days when this just does not work.
        I am so glad to find that I am not alone in this situation. There are times I wonder if I am imagining this pain or if it will ever go away. It will be nice to have a few consecutive days that a pain free. Hopefully soon.
        Thank you all of you for sharing your stories and encouragement. I shall keep you posted after the next round of surgery, number 18 , which is in 4 weeks.

  129. Noone will repair my recto vaginal fistula. I just need to know how I should best clean all the feces out of my vagina without creating further damage or giving myself a yeast infection.

  130. Hi
    What a great site. Ive been searching for information and this has really helped. Ive had a fistula for a year following a peri anal abscess. Ive been fairly ok with it once i got used to it. My partner and i broke up so im currently single, though he was a great support. Im having flap surgery in 7 weeks so even though im 45 and feel like i should be dating, im going to focus on me.
    My query is about the recovery from the flap surgery. Surgeon said i will have a drain for 6 weeks and will need about 2 weeks off work, 3 days in hosp and no eating for 2 days after. Im interested to know peoples level of pain after flap and if two weeks off work sounds right. I work full time in a desk related job. Im considering part time work while the drain is in. Also after reading comments im considering giving up alcohol to give my body best chance of healing. I eat very well and exercise. Any other tips. Also what is pain level like after flap surgery. And is the drain small enough to not be a bother, or is it worse than a seton? Does it just drain into a pad?
    Thanks

  131. More surgery on monday for fistula, will b the 6th since Oct 2012. Have a seton placed. Consultant advised the last fistulotomy was the largest he has undertaken. Has nearly healed. Ive no idea what will happen monday and i am really anxious. I am so fed up with it all. Ive had nurses packing wounds every day from this started. However they have been fantastic and I’m veey lucky, but as u can imagine I need some normality back. I need to get back to wrk so hopefully I will not be cut to bad this time. Thank goodness for the aupport of family and friends as these things are a curse. I just keep twling myself it is curable. Need monday over now.

  132. Hi All,

    My story is this. In Aug 2012 I developed a peri anal abscess. Went to docs, gave me antibiotics and sent away. It then began to drain into my back passage and would go through this cycle about every 10 days. In Sept 2012, my GP referred me to see a colorectic surgeon. Saw her in Dec 2012 (this was her earliest appt available to me!) She examined me and said she would get me in for examination under anaesthetic. I went home and waited for the appointment to come… After several phone calls to the surgeons secretary and 2 further courses of antibiotics, I got a surgery date for 1st May 2013!!!!!

    However, in March 2013 I developed another abscess on the outside approx 1 cm to the right of my anus. My GP again gave me antibiotics and said if it got worse to go back to him. Two days later he admitted me for an emergency I&D. The relief was instant.

    So anyway, 1st May came and I went into hospital for my scheduled operation with my Colerectal surgeon. I explained what had happened since my consultation 5 months previous!!!

    I woke up with a drainage seton in place, she told me its quite high up. All was good until 2 weeks after surgery and I am now in the most excruciating agony when I go BM. Called my surgeons secretary and saw my CRS, she said the fistula is looking ok but she thinks I now have a fissure too.. I never had this before surgery..My sphincter spasms are excruciating, they stop me mid sentence if you know the sort of pain i mean. The worry I have is that my seton seems to me harder to move, almost tugging inside when i try to move it. Is this normal? It feels like my tissue inside is healing around it. But i move it twice a day as advised by my surgeon. There is small amount of drainage still, a little more after BM.

    Can a drainage seton start to do the job of a cutting seton? When i saw my surgeon last week she said that it could of already started to cut? That could be the pain.

    Im a self employed beauty therapist and have lost so much money through cancelling clients, I dont get sick pay…I feel its ruining my life.. I never leave the house, My sex life has disappeared, although my husband is VERY understanding.

    When i asked my surgeon what her plans are with me, she said next stage is a cutting seton..Im absolutely dreading it, Im in agony now, whats it going to be like next time!

    I bathe twice a day, and shower once a day. My whole daily life revolves around this THING I have. And because I dont know how I am going to be feeling, I live day to day when it comes to work, social life, or even getting out of bed!

    Can a fistula heal without a cutting seton, Im tempted to just cut the bloody thing out!

    I am glad I found this forum, but I dont hold much hope for a relatively quick recovery… Does this ever happen?

    Thanks for your advice x

    • Hi smcookie,
      Talk to your GP about Endep 10mg. My spasms are great after taking 1 nightly.
      I think that most of us take ages to heal completely. So we’re in this for the long haul. But thank God we have each other!!
      Good luck, and always seek extra opinions.
      Try the S.C. diet (links above in other posts) it’s the only way to lessen drainage and pain.
      Meg :)

    • Hi, your problem sounds just like mine, a abcess a op, a fistular will nearly always appear after that op, a seton is the first option, however a high fistular seems to need more options so the next step is a chose of other ops, i,v had a number of op,s but ended up with another Seton in place for the last 3 months, its painful so i take Tramadel etc every day, infection is a problem, iv just taken a course of anti- bioctics even tho i have a Bidet, sitting down is the worse thing i find so i try to be doing things as much as possible, not easy, i,m sure you will cope, but keep onto your GP when needed, keep taking painkillers when needed it,s your body, yes there are more people with this problem than i ever new, keep fighting, i took painkillers a hour before the packing, try it. Chin up Paddy.

  133. Hi all, I am writting from my hospital bed after my 4th surgery since aug 12, I was admitted on saturday its now monday 6am here in the uk. Since having a seton place on march the 1st I have been in constant pain I have a complex fistula which crosses through the sphincter muscle my “normal managable” pain is usually around a 7 outta 10 every single day with the edge taken off my 8 tramadol 8 co_codamol and 5 neuproxen aday! However on thursday this pain hit a 10 and I couldn’t even walk called my gp who gave me 2 different sets of antis to start which I did straight away, I woke up saturday in the same pain with the added pleasure off vomiting and a huge hardened mass away from my seton on my bum cheek. I went to A&E and was addmitted and placed on the emergancy surgery list I was not opperated on until 4pm sunday and woke to find I have a 4 inch insection and the abscess that was drained was the size of an orange! My seton has been changed for a rubber one so less corse and not as tight so hopefully this will drop my “normal” pain, as for the new pain and insection that will need packing I am petraifed I was in a lot of pain from my first ever drainage which left a small 2 cm cut as opposed to this 4 incher I have now, the surgen aslo spoke befor surgery about laying open the fistula with the seton in but this was not possible as after going 3d it revieled that it croses to far into my sphincter so he has suggested that lift surgery may be the next step? I must say this all confusses me so much, the only thing keeping me going is morphine at the push of a button every 5 mins as I know that the first packing of this is going to kill me :( I must say I am so greatfull for this site and only us suffering this illness truley understand one and others pain hope everyboday has a good day all the best Claire x

    • I completely understand went through similar, 5 inch in jan and have just healed over. Going today for another fistulotomy. The pain will ease. Its an awful illness and at the minute its probably hard to see the positive but u will see improvements everyday, we just need alot of patience. Morphine helps with the first dressing. At home I took diazepam and morphine before dressings for a week. Take care

      • Hi sandcastle, wow 5 months to heal over it seems such a long time, I’m still in a considerable amount of pain still sticking with my cocktail of pain killers, I been having it dressed daily for then past two weeks, it’s getting smaller which must be a good thing but still so sore, just waiting on hearing from my consultant for a review hopefully it will be soon, also on the first packing in hops they gave me a injection or morphine it didn’t do much I still cried like a baby lol, but got out and about with the kids today so that cheered me up, hope your well x

      • So glad u are starting to geel better that u where able to get out with the kids im sure that lifted ur spirits. My wee one keeps me going, if it was not for her I prob would have spent alot of time feeling sorry for myself in bed iver last 8 mths.
        U may get used to the packing I have had nurses daily for 8 mths. Im very lucky though they r sooooooo good.
        My last surgery was not as bad still packing though and surgeon thinks I need another 2 or 3 surgeries. Veey frustrating as need life to get back to normal, only bonus is I get more time with daughter at home.
        I am just abit obsessed with remaining infection free so am constantly showering and salt baths after using toilet. Only downside is I have to change dressings and make shift it until either my hubby, who is a star or the nurse do it right.
        Stay well and take care. Its great to chat and share with others who understand x

    • Hi everyone,
      After like 6 surgeries since October, I FINALLY didn’t need another lay-open.
      I still have a seton but my surgeon said my fistula was finally a lot smaller and I don’t need to see her again for three months. WOOO!

      There IS hope out there!

      My tips for fellow sufferers are:
      Avoid sugar and foods with yeast, avoid grains (wheat, oats, rice) and most of all, avoid dairy! The bad bacteria love these foods and then your fistula just isn’t going to heal because your bowel motions won’t be clean enough.

      Try a natural diet of fruit, veg, fish etc…
      I know it’s hard, but try and make some changes.
      (Make some bread and biscuits with almond flour)
      http://www.scdrecipe.com

      And I found the Manuka Honey is great for healing.
      And take non-dairy probiotics.

      And ALWAYS keep the area clean with Epsom salt baths.
      This will help dry out any infection and promote healing.

    • Jesus Claire u poor thing, your rightly goin through it, I am finally on the mend after a year and 3 surgerys, I remember the first packing after surgery, I found oral drugs never helped just made me drousy but pain never eased, I finally got a hold of a topical spray, its lidocaine and the difference was night and day…. beg for it, there is a few different types xlocaine and few others but lidocaine was the only one that WORKED..best of luck sending positive thoughts and prayers your way..ber x

      • Hi Ber, I’m going to have a look for the spray your talking about ill give anything a try, I’m still,in a lot of pain but not as bad as when its at its worst if that makes sense lol, I’m waiting on hearing from my consultant and the incision is getting smaller by the day thank god, thank you so much for you thoughts and prayers it means a lot all the best x

  134. Had another fistulotomy not as big as before though and seton replaced. Was told im prob going to need another poss 3 surgeries and maybe a colostomy as fistula wrapped around my spincter. That will make it 9 surgeries, at least a yr of wrk. I am so fed up today, I kniw there are positives but hard y o think about right niw. Has anyome else had similar experience.

  135. Yay for Me!! Finally some good news. :)
    My specialist is going to do a LIFT next month. He even said if things go well and he can see things a little clearer, (due to lack of infection and inflammation!!!), he may just lay it open instead. Words I’ve been praying to hear!
    Everything is going really well and he said increased pain and bleeding are all good signs of healing!!
    Thank God!! Here’s me thinking things had taken a turn for the worse…..
    I’ve had some pretty down days lately, but am finally looking at some kind of positive outcome soon. Makes a big difference to the way I feel.
    June 21st is OP day. Going to be a big month of eating clean and getting as healthy as I can in the meantime. Yay again, just YAY!! :)

    • Great news!! :-)

      • Great news meg….good luck….hope all goes well on op day

      • Hi Mel

        Just wanted to let you know l am so happy for you,things are finally going your way.I know l have not been on the site for awhile,since my last surgery before Christmas 2012.I had the fibrin glue procedure,suffering with pain,bleeding and inflammation. also had a tear in my 4 and 5 lumbar disc.Months and months of therapy for that issue.I do have IBS,diverticulosis,spastic colon,yet they still can not find crohnes disease,even though my crs says that l do have this yet it is not visable with all the test he has done.He sent me to his G.I guy,who put me on medication to control the IBS,diverticulous and my spastic colon back in March 2013.The physio helped for the disc. problem and the medication finally eased the .pain,inflammation and bleeding from the fistula.I can say as of May first 2013,l have finally got my life back!!!!yip pee!!!My fistula still is not completely closed the crs said it will be at least 3 to 6 months for it to close if in fact it will close…said,keep your fingers crossed!!!!Oh l do have perianal disease also,because l did have a fissure and 2 perianal abscesses,before l had the fistula.I feel great and l did say to the crs,do you think l could be the 20% success rate and he said lets hope,keep yor fingers crossed,this may just happen for you………So far so good!!!! having a normal life again means the world to me…it has been two very long years of hellJust wanted to let you know anything is possible!!!Best of luck to you my friend. xo

        Ren755l

      • Thanks you guys, this site is the best! :D
        Hope you are doing okay yourselves? xxx

    • great news meg, everything crossed 4 u hon, still healing and mending myself but all good tg..so hopefully you will have same results. Keep positive everyone there is hope for us, praying for everyone in pain and send positive energy you way.. ber x

    • Great news all the best meg x

  136. Good to hear from you Renn!!
    Thanks so much, I think a positive attitude goes a long way. Our life issues are so hard for other people to understand. I guess if we had crutches or cried all the time people would know how to deal with us, but as it is, we have to be very strong.
    It feels to me like you are on the road to a full recovery. My fingers are crossed and I’ll pray hard for you.
    Good luck! xxx

  137. I have a fistula sticking out of an open wound in my stomach. It has been here for over a year now and I wear a bag on it. I was loosing weight but all of a sudden I am gaining. What can I do? I’m obese and don’t need to b gaining weight back. They w not attempt to operate on my fistula due to my weight already. Please help me I need some advice. Thank you

    • I have been doing gluten free and dairy free for the past month I have lost about 5-10 lbs and significant improvements with pain. This weekend with the holiday I was not so mind full and had a couple things with dairy and one thing with gluten and just that little bit cause increase pain and I felt horrible.

      I also do a personal trainer two times a week. I know at first people always say I can’t afforded that. My husband and I were living pay check to pay check and him unemployed and we found a way to make it work….I was amazed when I really focused on making my lunch for work no more stopping for coffee drinking mostly just water. Before we knew it we had my trainer paided and it was not breaking the bank. I first startd once a week to make sure my fistural held up ok then added a second time. If you do training make sure you find the right trainer. Mine is very health focused and well being she is not a drill Sargent. She checks in every session about pain and drainage and adapts my work out depending how I am doing. A personal trainer who does not ask about medical history is not a good mix. My trainer She also helped me stay focused through 4 surguryies since dec 2012 and get me back working out safely after each one by working with my doctors restrictions she will even call my crs to make sure what she has planned will not effect the fistural.

      I am not skinny by anyways I was over three hundred pounds when I first started a year and half ago and I am now down to 280 lbs. I know does not sound like a lot in a year in half…but they way I look at it is I did not gain wait durning this stressful and pain full time and after my flap repair aug 2012 I was unable to do anything other then light walking till nov 2012.

      Be positive, find positive intrests…

    • Have a couple ideas. Since you are already obese, perhaps they could do weight reduction surgery and the fistula at the same time, or one and then the other. OR How about trying a hyperbaric chamber for the fistula?

  138. I have fistula in ano , I remove fistula thru operation pain less operation. I operate on 24 may 2013 and discharge on 26 May 2013. Becoz another hole some time discharge stool new hole. I want to know this is normal things, some time pain in operation area . How much take time for recovery. Pls suggest me dite and some thing els for fast recovery.

  139. iam 19.
    For 1st time i got pain,bleeding during bowl movement i notice that small pink colour pimpel on my anus.when i searchd i got to know that is fistula.can u people advice wat do. is surgery is only way to getrid of fistula?

    • Smd
      Find a colon rectal surgrgen in your area and they will advise you what to do. From what I am finding is almost everyone gets at least a seaton placement. My first one I would not lie was horrible, just had my second one placed a month ago and has been pretty good this time. I see my doctor in a week and as long as what she sees matches how I feel I will just keep this in. And not do further surgury. But a good colon rectal doctor is the best place to start

  140. Hello there . I am Drasko . i had surgery in Boston for my anal fistula. My problem became even more complicate than what was before. I have iritation skin every day , its pain full. Also discharge more then before also my stool discharge from that wound

    • Drasko, who did you see in Boston? I am from Maine and went down for a second option and meet with a doctor Reed (I think) at the layhee (sorry not great with spelling) he was wicked informative and did a nice job with teaching while explaining. I ended up keeping my doctor in Maine as he highly recommended my doctor and just a lot easier with complication. But had I lived closer I would probably gone with him due to how explained everything.

      As for what your going throught now keep telling your doctor. I had a flap repair in sept that did fail and pain was horrible just last month they went back in and started with a seaton again and pain has been so much better and drainage more controlled. But I was doing monthly visits from oct to may with my doctor as she was trying to determine if it was scare tissue causing problems or the fistural. Also if they have not already prescribed it ask your doctor about Ativan for pain ment normally a anxiety med but helped so much with pain as it helped to relax the area. And you don’t get the constapation issues that come with other meds…

  141. I have undergone 6 surgeries to date for complex fistula. Surgeon says another 2 or 3 needed. I am becoming increasingly frustrated that he does not take into account my needs between surgeries ie infection management, financial situation and parenting needs. He tells me very little even though I ask alot. My gp has recommended I consider a second opinion as the surgeon says mine is the most complex he has came across. Has anyone ever sought a second opinion? , was it useful, did it impact on care received from main surgeon?

    • Sandcastle,

      I did get a second opinion before I underwent my second surgery with my crs as she kept saying how complex it is and how low success rates were. For me I ended up using my original crs but the second option put my mind at rest a little bit. As I said above I liked how the second doctor explained everything very well howeve he was about a hour and 45 mins away from where I live and it just would have made things much more complicated.

      Highly recommend a second optinion even if you keep the first, my first crs was very much ok with my decision to get a second on and referred back to the note they second person had sent when my surgury did fail before prosecuting to anything else….

      • Thanks rachel, think I will go ahead. I dont think my consultant will be as acceptable however, he is very arrogant and I dont think he will like being questioned.

      • Hi I,m Paddy, now just 69yrs old but i,m told i look at least 10 yrs younger, i do enjoy being outdoors a lot, gardeing etc, but my problems started 5yrs and 12 ops ago, well today i saw my consultant surgeon, he,s stumped as what to do now, i,ve had a plug, the lift , layed open etc, but he has at least referred me to a Specialist in London, so fingers crossed i may see the day when i,m not in pain, i have a Seton in place at the moment, now in for 3 Months, it hurts, by the way what i ment about age was i try and be positive, walk and even cycle if i can. So yes get a second opinion, i did not asked for one before, perhaps i should have done. I,m off fishing Thurs plus i may drop into my local for a couple. Stay strong and say your piece to your doctors, Paddy

      • Thanks paddy. I am definitely going for 2nd opinion. I have had enough of being kept in the dark when its my body and life. I hope you get the help you need in London. X

    • hi guys have not been on for ages(thank god!) after my 4th surgery (lay open) feb 13 I am (fingers crossed) totally healed!! I wanted to let ye know as there is hope, no one knows the pain we go through, endless torturous packing…it all seems like a nightmare now..in answer to the person inquiring about second opinion ” DO IT” I did and eventually got to a corectal surgeon (clearly cannot spell that) all though its still not ” right ” in the area and can still be painful, its the best its ever been…im totally paranoid tho and bring sterile wipes and sudocream everywhere which after cleaning I apply up to 3 times a day..it seems to protect that area very well.. do the diet..drink cooled boiled water with manuka + honey every day..take plenty immune system vitamins and don’t give up..listen to your body and insure doctors listen to you.. best of luck…praying for healing for all of you.. ber x

  142. Good luck in London Paddy x
    Also to you Sandcastle. We all need to think and live positively towards our recovery!! (Stuff your arrogant surgeon ;))

    • So true Meg thanks

    • I had my sevond opinion and rather than having a further 3 surgeries and then a colostomy, the second opinion consultsnt said I have been through enough in last 6 mths and advised no further surgery at this time and to have a softer seton placed long term. So I can get on with my life. He alao said I could develop my spincter muscles in meantime ans reconstruction surgery would be preferable in the future rather than opting automatically for colostomy. He was clearly very experiences 40 + yrs. It was great to talk with a consultant who understood how life with a fistula impacts on my life. Will b interesting how my surgeon will react to this info.

  143. HI guys ..i had fistula and had surgery on 03/june/2013 in NAGPUR INDIA in kale piles hospital. to visit the website kalepileshospital.com . Today 10/june/2013 i am very comfortable . The Dr reported me after the surgery that i had fistula but he also found out that i had fissure and treated it. He is a brilliant surgeon and i am not having much problems. he treated me with Ayurveda as well as surgery . Thanks to him .

  144. Great news today just had my 5 week follow up after my seton placement and for the first time in 16 months I left my doctors office smiling…..she said my fistula looks the best she has seen it….I follow up in three month and if all goes well we can start trying to have a baby…when all else fails change your diet…she told me today to keep doing the gluten and dairy free it seems to be doing something :)

  145. Hi
    That’s great news. I’m just wondering if you have celiac/ulcerative colitis or similar? I don’t have any of those conditions, but am having a fistula repair soon and am considering doing the unspecified carbohydrate diet. But, not having those conditions, I’m not sure if it will help me.
    Jane

    • I do not have any dx of ibs celiac/ulcerative colitis or any BM stuff that caused the fistural. My doctor did not tell me to do any diet changes but after a year of pain I found this site and decided to try it. My doctor today could not confirm any connection but if its helping she said to keep doing what’s working.

      • Great! Thanks so much for that. I only recently found this site and saw that people had success with the diet so I’ll give it a try

  146. Hi I was born with a birth defect where my anus was partly closed and in the wrong place I had surgery when I was a baby to fix it the surgery was successful. I had my first baby in 2003 she was born a bit over a month early at 6lb3oz I had a vaginal delivery, it went well. I had my second baby in 2011 I had a vginal delivery for her too she was a week and two days late and was 9lb3oz she got stuck because I am a small person, I ended up with a forth degree tear it was bad all the surgery I had when I was a baby was torn apart. My baby almost died I am great full she is alive because I dont think I would have the strength to go on. I had surgery to fix everything when my baby was 5 months, it went wrong I ended up with a large anal vaginal fistula and had to get ostomy surgery, my dr. tried to fix the fistula last November 2012 but it didnt work I am in so much pain I feel like I am loosing my mind I never knew pain can do this to a person I am trying to be strong for my family. I dont understand why I am in soo much pain can some one please help me understand why my fistula is hurting and how I can stop it my dr. is a great dr. but he cant figure it out please help me.

    • Gosh what a nightmare, sorry to hear you are going through all of this. To be honest, if your doctor “can’t figure it out”, then you need to go to a different doctor. Go and see a specialist in this area…

  147. Jane, I have been on the S.C.Diet since a month after my fistula was first diagnosed and have now, nearly 7 months later gotten to the stage where I KNOW it is working.
    Every single time I eat something that is not on the list of approved foods I get increased pain, swelling and discharge.
    Trust me, what we eat is so important if we don’t want to be stuck with a seton for life!
    I find wheat and sugar particularly aggravating and have been very successful avoiding both. I can get away with a little bit of milk in my coffee and I absolutely LIVE on cheese.
    See how you go. Some people will react in different ways to different things. I think the worst thing is the wheat or grains/nuts.
    Good luck.
    Meg. :)

    • Hi meg
      Thanks so much for that. I’m convinced! There seems to be a lot of people who have had success. I’ve got the book and have started the diet. Having flap surgery in a few weeks so its a good time to start it.
      Hope you’re doing well
      Jane

    • Wow Meg you are so lucky you can eat cheese. I can’t have ANY dairy.
      I am trying to follow the SCD diet but it’s so hard. But I agree, it DOES work. I encourage people to not give up and keep trying.
      My fistula is finally improving since I reduced my sugar and grain intake.
      If I want to bake, I use almond flour.
      The only problem with the SCD diet is that it makes meeting people for dinner or lunch impossible.

      I also have to recommend Manuka Honey, and a probiotic that is Dairy/Soy free that MUST contain Saccharomyces Boulardii, which kills the bad yeast that destroys our bodies.
      KILL THE YEAST! haha

      • Hi, i,m struggling with pain from my fistular, back on anti- biotics, seton in bum is where the pain is, however, could you tell me what this SCD diet is, i also love and eat plenty of cheese, cant wait to get my second opinion soon to hopefully sort out this DAMM problem, i,m trying to keep my chin up, perhaps this diet may help, thanks Paddy.

      • Hi Paddy,
        The SCD diet is the “Specific Carbohydrate Diet”.
        It’s a diet that excludes all grains, sugars (including artificial ones) and lactose from the body.

        Here’s the website. It will give you a list of the legal/illegal foods

        http://www.scdrecipe.com/

        Basically the short version is:
        No sugar, no grains and flours of any kind (including corn, potato, tapioca, oats, wheat), no lactose.
        If you want to make bread or biscuits, use almond flour or coconut flour. That’s it. Those are the only flours allowed on the SCD diet.
        Use honey as a replacement for sugar.

        And don’t eat too much fruit at first, and make sure you peel apples if you have one.

        Plenty of fresh fish. I recommend omega 3 tablets too.

        Doctors are ignorant and don’t believe in this stuff, but it really works.
        We can never cure Crohns, but we CAN control it and ease the symptoms by balancing the bacteria in our body.
        That’s what this diet does. It starves the bad bacteria.

        Also, I recommend that probiotic I mentioned earlier.
        It must be soy/dairy free and contain “saccharomyces Bourlardii”

      • I go out for lunch and dinner all the time Melanie! I order a salad or a steak and vegies. You just have to fudge the lines a little and eat as close to SC as you can? Works for me. Looking into the probiotic you mentioned too. Thanks.
        I’m having my surgery next week, and I’m getting kind of nervous, but I have not felt better in the whole 7 months since this ugly thing first showed up.
        I must admit it has changed my life for the better. I’ve given up smoking, drinking, wheat, gluten etc and have started to look into the GMO crap that Monsanto have been passing off as food.
        We very rarely eat or feed our kids anything out of a packet, and the whole family feels better from not any eating processed food.
        I guess I’d have to say I’m kind of glad it happened. I needed the wake up call…..

      • Good luck in your surgery Meg! Fingers crossed for ya!
        I have a endoscopy/colonoscopy next week, and hopefully my final fistula surgery in August.
        My new consultant wants to put me on Remicade.
        I’m worried about it, but I’ve had my fistula for way too long and I guess something needs to be done.

      • Hi meg
        Which surgery are you having?

  148. Jane,
    Either having Lift or it will be laid open. Depends on how the fistula looks to my CR now.
    Mine is complex and “horseshoe” shaped. CR is concerned about how deeply the tract runs through both sphincter muscles, but at last visit was a little more positive about laying it open.
    Unfortunately I won’t know which surgery has been done until I wake up, as he uses ultrasound during surgery and won’t decide himself until I’m “under”.
    I’m kind of hoping for a Lift as I am terrified of the pain and spasms of laying the fistula open. I have suffered from chronic sphincter spasms since the birth of my first child 23 years ago. I fear they will make a lay open impossibly painful for me?
    Anyhoo, whatever happens will be all over soon. I’m just praying for a successful surgery…. for both of us now :)

    • Hi meg
      Oh you do have a complicated one. Mine is close to sphincter muscle but doesn’t go through and is relatively straight. I found this site a little while ago and so have seen a lot of your posts and I have to say you have a great attitude. I think I do as well, it’s the only way really.
      I guess the unknown of your actual operation is the hard part for you as you can’t really plan recovery at this stage.
      Anyway I’m sending you lots of positive thoughts for it and a successful outcome.
      Jane

  149. I had my surgery 3 days ago. Just a regar fistulotomy. No seton, no medication. What I’m wondering is how normal is the drainage? It still feels very much like it did before my surgery. It is draining puss and stool after a bm. It settles down until I have another bm then starts all over again. I’m beginning to think it isn’t working. I’ve put a call into my surgeon for advice, but being Saturday he hasn’t called me back yet.

    I’m just wondering if anyone can tell me if this is normal. I’m getting really depressed and nervous about this. Is this kind of drainage normal? The nurse said to expect some blood, but it’s not really bloody at all. More brown and puss like. :(
    Any advice would be greatly appreciated.
    Thank you

    • I had the same following fistulotomy’s. U will p r ob have faeces there but just keep ckean and after a while the discharge will go a lighter colour. Keeping clean with bath and/or shower is so important. I also use tea tree oil and epsom salts in the bath.

      • Did yours heal? Did it take very long? Do you think the Epsom salts help? I’m just worried that its not working. It’s really frustrating!

      • It depnds on the size of the wound. Ibe had 6 wounds and healing varied from 8 wks to 5 mths. Mine is not yet gone as told its a highly complex tract. The surgeon is planning to place a seton long term to give me some respite so my life can get back on track. I definitely think epsom salt and tea tree oil in the bath help even once a day and then showers after bm. As it seems to manage other symptoms including the itch u can get. We just need to be patient with these things, can b really tough but talking to others helps x x

    • Hi Steph
      I’m certainly no expert, but I think this is normal at first especially so soon after a surgery.
      If you have a bidet in your bathroom use epsom salts daily, and multiple showers too. Use the shower nozzel to clean the area straight after a bowel motion and then have an epsom salt bidet. (if you don’t have a bidet, perhaps by something the chemist that would work instead)

      I found from experience that keeping the area extra clean with the salts reduced the puss and help it heal. It dries up any active infection, and thus helps the fistula heal inside too.

      Hope this helped.

      (also, avoid dairy, soy, sugar, grains/carbs like potato, rice, oats and wheat. Get a good proboitic and start taking Manuka Honey )

      • Any idea what the link to carbs and dairy has to do with it? Thanks for all the advice and support.

      • My fistula surgery done on 24 may 2013. For fast recovery u must take high protine dite, ots, soya product, milk, maximum Fruts, 4 time take lemon water becoz of vitamin C. Water 8-10 glass in a day. U also take coconut water, watermelon. This can recover u 4-5 week. Sitz bath also requires two times in a day.
        Thanks
        Anup

      • Anup what are you talking about? You MUST stay away from Dairy, soy and Oats. This is very bad for fistulas. They cause bad bacteria!

      • You are right Melanie – Dairy is the worst thing you can eat if you have a fistula!

      • Thanks everyone.

      • Steph- do NOT follow Anup’s advice. Many people here have already mentioned it, but try the SCD diet (specific carbohydrate diet).
        For fistulas to heal quicker, you need to make sure your bowel motions are as clean as possible. Stuff like grains and dairy cause bad bacteria in our gut and make fistulas impossible to heal.

        Follow the SCD diet. I recommend it a lot, it’s changed so many people’s lives. It’s all about starving the bad bacteria.

  150. Hi guys!
    i was operated for Fistula-in-Ano on 25th April 2013…still recovering.
    My cut is 8 inches long & 3 inches deep.
    The Story goes something like this :-
    18th April – Fever
    20th April – Trouble Sitting
    21st April – Extreme Pain to Stand, Sit, Sleep unless on Pain Killers.
    22nd- diagnosed as Perianal Abscess
    24th – Surgeon said Pilonidal Sinus needs to be operated as no other way.
    25th Operation Theatre – After opening me up detects my FISTULA.
    (transsphenteric) with 22 stiches (12 internal + 10 external)
    26th April – Stiches removed as extreme pain and stool started passing through Cut (laid open thereafter to heal on its own).
    While i had my stiches dressing the hospital was damn painful…used to kill me every moment.
    30th April – Discharged to go home but continue dressing thereafter after very passing of stool or twice in a day with Sitz Bath which is taken care of very well by my better half (wife). Saline NS used to clean the wound & dressing with Hydroheal AM gel to fill up the wound and protect it from infections.
    today as i write this…am still recovering slowly….but no pain as such since the day of my operation. Already been 7 weeks…and from what she says…it shud take atleast other 4-5 weeks for me to recover.
    Not been able to drive a car or ride a bike. have to sleep on my chest facing down.Lost 10 kgs of my weight in this 7 weeks.
    Have slept only 4 hrs everynite since coming home…..very frustrating too.
    would advice people who go for surgery to be prepared for this situation of stool passing through your fistula tract post surgery as when i went through it…cudnt come across a single blog mentioning the situation which in itself is very depressing & frustrating for the patient & care taker.
    My surgeon says in his practice of 25 years he hasnt come across such a big fistula tract in last 15 years. (guess i am one the those unlucky one’s to have it).

    All i can say is post operation…all u will need is patience & will power to recover fully. Ofcourse lots of love from your family and friends if they can keep visiting once in a while to divert your depressive mood. (helped me a lot). Gear up for the operation mentally…will help you to cope with it.

    My surgeon Dr. Yogesh Chandaran (Mumbai – India) advice & treatment has been gr8 so far to me as pain has subsided post operation as promised by him on my first visit to him.

    Will keep you all updated on my condition in future…till then best of luck to all suffering from Fistula-in-ano.

    Love & Regards,
    Miheer Desai. (INDIA).

    • Miheer,

      As you are in India did you consider the Sutra ayurvedic treatment which has been advised by one of the members of this forum who has undergone this treatment successfully?

      I checked after reading about and was quite impressed but not available in Australia.

  151. Ok, I have a question and I apologize in advance for the graphic detail, but I’m seriously worried.

    The day of my surgery I had a lot of pain in an area not related to the fistula. It’s actually at the complete other end. Anyway, it got better but is still there. I did notice, upon inspection that there is actually something there that wasn’t there before. It’s on the bottom end of my anus. It looks like a tear, it’s very red, and there appears to be a small red lump in/by it. I’m wondering if it is possible that I was torn during my operation. Do they use anything to “open you up”? It definitely wasn’t there before. I’m worried about it because I just want to heal and go back to being “normal” again if that is even possible. I don’t know if it is a small hemorroid…I’ve never had them before and it doesn’t quite look like one after I googled some images.

    Does anyone have any experience with this sort of thing? Is it possible that a fissure or a tear happened during surgery? Is that common? I called the doctor and they can’t get me in until Friday and I’m trying not to panic. Thanks again for the support here…I really appreciate it.

    • If u r in alot of pain I would go to a & e. It may b nothing but u had better get it looked at even to put ur mind at ease.
      After one of my fistulotomy’s I developed a small abscess as a second tract developed. I dont want to frighten u but it is better to provide a suggestion than say nothing. But again it may b nothing and I would get a professional to look at it.

    • Steph, could it be a hemorrhoid or fissure? If so, don’t worry.

      • I’m thinking it could be a fissure but I’m not sure. It had to happen during surgery because it wasn’t there before. Are they that rough that they could have caused that?!

      • No but pain-killers for the dressings gave me REALLY bad constipation and caused a fissure. Don’t worry, if it’s a fissure, it will heal itself.

      • I’ve had zero constipation. I’m positive this thing appeared the day of my surgery.

    • Hi Steph, gosh thats weird, im almost recovered from my lay open and still having ups and downs to be honest but I have same thing my doc and surgeon said its poss hemorroid or spare tissue and not to worry,Ive been using hemorroid gel prescribed by my doc since surgery 1st feb but its still there and still very sore and bowel movement makes it extremely painfull, wonder if the same as yours? seeing surgeon for last time 29th, fingers crossed and will bring it to his attention again as has not chaged and ill let you know, keep it clean and take care..ber

  152. Hey, I’m 22 years old, from The Netherlands and also suffering from perianal abcesses for the last 3 years. It started three years ago, in June: mu butt hurt a lot and I was too scared to tell anyone. Until I started getting a fever (40 degreed) while I was visiting my parents. I stayed in bed for a couple of days but still I didn’t dare to tell my parents, and my butt kept hurting like hell. So after about a week I told my mother and we went to the docter right away. She instantly recognised it as a perianal abcess, and sent me home with some antibiotics and the message to come back in a few days if it didn’t help. The fever disappeared due to the antibiotics, and I started to feel better, but the pain in my ass was still really bad. So I went back to the docter, whom then sent me to the ER right away. That was early in the morning, and a seton was placed later that day, with a spinal anasthetic (which isn’t so bad, I was really scared at first, but the spinal doesn’t hurt very much, just a pinch). I went home the next day and home care came to rinse the wounds twice a day for about a week. After a week the wound were still clean (no pus) and the seton was removed. The wounds would close in about a month, the docter said. Wish that were true. The wounds never closed and began leaking fluid and pus soon after. But at least it didn’t hurt (well, not physically at least). About a year later I went back to the hospital (no pain, but the wounds kept leaking, and a seton was placed again. I rinsed it myself at least three times a day, but again, the wounds wouldn’t close. After a couple of months I went back to the hospital, because my ass started hurting again. So a seton was placed for the third time, and it didn’t help, again. At that point, they thought there might be something behind it, because I’m young, and young people don’t often get abcesses like thiis without any underlying cause. So I got a coloscopy, and they found I have Crohn’s disease. Soon after that, I changed hospitals (for practical reasons, and because I wanted to go to a academic hospital) and I ended up at a doctor who was performing a research together with a lot of other hospitals in many countries. The research (stage III already) studies the effect of adipose stem cells on complex perianal fistula in patients with Crohn’s disease. And I was quite lucky, because to participate in this study, Crohn’s had to be quiet, not to severe at the moment, and the abcesses couldn’t be bigger than 2 cm, and they weren’t. So last monday, two setons were placed again. And now I’m on some antibiotics. In two weeks they’ll inject fibric glue – with or without the stem cells (50/50 chance) – into the ‘holes’ and hopefully they’ll grow and close the tract. The place in the rectum where the fistula originated is already closed, my doctor could tell me :-) And at this moment the wounds are still pretty clean: a bit of blood and some wound fluid is leaking, but no pus at all. So hopefully this will work and I’ll finally will be free from this terrible illness! :-)

  153. Hi fellow suffers, quick update, still in constant pain and have been having daily packing and dressings from my last surgery, I’ve had a bad week as it now turns out that I have an abscess forming on my right side now :( started antibiotics on Monday but can already feel that it’s grown in the last 2 days keeping up with salt baths and the area is really clean but I can’t imagine having the seton, the new crater and one on the other side, I still have no underlying cause as to why I’m suffering with these but in my last surgery they did take pathology so hopefully when I meet with my consultant on the 11th of July ill get some answers,
    Hope and pray is all I can do chin up and carry on ay xx

  154. Hi! I’m Jai from India. I went in for a haemorrhoid surgery 6 days back, had an external haemorrhoid. The surgeon did the surgery under general and general anaesthesia and while doing the surgery he noticed a fistula which he treated.

    The first two days after surgery were fine last two days I’ve been getting some pain from time to time. Mostly feels like a sharp pain that comes and goes. But the worst pain is when I go to the toilet! I have never experienced pain like that before. I understand it is normal to experience a bit of pain initially so I’m dealing with it with pain killers and take a sitz bath atleast 4 times a day.

    I went for a follow up check up and the surgeon said its healing well…no sign of infection.

    What has given me sleepless night since yesterday though is that I experienced some bowel incontinence. And my gauze that I change 3 times a day has red and a bit of brown stuff on it (Sorry for being too descriptive!).
    My question is that is it normal to suffer from a little bowel incontinence after the surgery or is this not normal? I brought it up with my surgeon over the phone today as I’m getting paranoid and he told me he didn’t really fiddle around with my sphincter in order for it to get damaged…and said the surgery may have just temporarily weakened the muscles.

    Can someone please help me and tell me if they suffered too with this soon after surgery?

    • It is common to experience such thing.It should improve as time passes.Dont worry but as far as possible try to keep the area clean.You may have problem controlling the air and stools for first few weeks .Its normal..

  155. Hi gang,
    Back from Sydney after a very painful Lift surgery. I thought I was going to pass out for the first few hours after waking up. Each little pain sent me into the worst spasms ever!
    The day staff was great at the hospital but the night staff acted like they had to go out and buy the pain medication themselves!
    Today is day 6 after the op, and I’m just wondering if a lot of fluid discharge from the site is usual? After bleeding for a few days I now have a clear fluid on my gauze?
    Also how soon can I tell if the Lift was successful? I’m due to see my Surgeon in Sydney in about 5 weeks but is there anything to look for in the meantime?
    Thanks guys,
    Meg x

    • Hi Meg, so relieved for you that op is over, I afraid I don’t have advice for you as I had lay open but I would think pain and discharge to be expected, I did after my surgery, the good news is I have finally healed inside out and all discharge.bleeding has stopped. It is still tender and painful when having a bowel movemet but this is all normal I have been told…all good Meg isn’t it.. I pray this lift will work for you and you will be healed and back to yourself again, you so deserve it. mind yourself and take it easy as much as you can.. positive thoughts to all and don’t give up..ber x

      • Hi Ber, thanks so much. x

      • Hi Ber!

        How are you doing? I had my fistula lay open last week, it’s the 5th op I’ve had since last November (tho it all started May 2012) so I’m desperate for it to work and hoping you have good news to give me faith…! Are you still fistula free?

        I’m not on too much pain but my one concern is I haven’t had it packed. In clinic before he said it would need to be, but after the surgery he said there was no need. I’ve had 2 nurses come over and they say the wound looks ‘beautiful'(! I beg to differ but hey, the one good thing about this is that it’s an area only those ‘invited’ get to see!) and to keep doing what I’m doing….
        So it’s been 6 days and I’ve been resting a lot and pottering around the house. Should I be walking more? How long did you take to heal in the end? I’m feeling positive about this one but will be devastated if it goes wrong so keen for any advice….!

        Thank you so much for this website – I only discovered it recently but there are such good tips. Thank you :-)

        Xx

        Ps I’m 33, female and hoping to start a family……

    • Hi meg
      Glad to hear its over and so sorry that the pain was so intense. That sounds awful. I’m having the op in a week so I don’t have any actual experience, but bleeding for 5 days then clear fluid sounds absolutely normal. Do you still have pain now? My specialist told me that they generally fail within the first three months so its not an immediate success thing. The advice I’ve read is to take it easy, gentle exercise, rest that sort of thing.
      I’m just curious as to how much time you’ve taken off work? I’m taking two weeks off for mine but thinking about having another week off.
      Thinking of you, hope things continue to go wl and your recovery continues
      Jane

      • Jane I took a full month off work and expect to make a decision at that point as to how fit I am to return. The most important thing for me is full recovery from this so I am prepared to take as much time as I need.
        Things are going well so far. Still in a fair bit of pain, but if I rest things aren’t so bad.
        I’m lucky to have an understanding boss, who doesn’t want me to return to work too early and risk the success of the operation.
        Ultimately our health is way more important than our work, right?
        Good luck with your op. Make sure you get proper care afterwards. I had to shake up a night nurse or two in order to get my pain medication regularly!!

      • Hi meg
        Yes i think i’ll definately take another week off and then see how I go. My boss is also very understanding and my CEO said to take as much time as i need. Im planning for a very very quiet month to give it the best chance of working.
        Sorry to hear that you’re still in alot of pain but rest seems like the best thing.
        Take care
        Jane

      • For my first surgery I took 2 weeks off. They told me I would need only a week, but 2 was definately needed!

      • Hi again!! I’ve been back to work and am off again due to increased pain and swelling.
        I’m just not prepared to risk the success of my surgery. (I don’t ever want to go through that again!)
        After 3 (very active) days back at work it seemed obvious to me that I was doing damage.
        I have staples emerging painfully from the op site. Very sore and awkward when running around at work.
        I’m back at home taking it very easy before heading back to surgeon in 2 weeks for post op visit.
        I’m definitely going to ask him about the staples. Seems to me to be the cruelest solution, and he’d better have a damn good explanation?
        Anybody else had to deal with staples or is my surgeon the Marquis de Sade?

      • Hi meg
        Sorry to hear you’re off work again, the staples sound rough. I had my flap surgery 2 weeks ago and have another week off. I have stitches and a tiny drain. I can’t even imagine how uncomfortable staples must be. Rest sounds like the best option. I have a bit of weeping from the wound and minor pain but otherwise it seems to be going ok. Hope yours settles down soon
        Jane

      • Hi Meg, Lets hope your op was a success, staples wow, sounds amazing what they do to a body. I,m finding waiting to see this Professer so called expert in London in Sept a bit difficult, the seton area is painful, especially when the pus is leaking, its become a battle of wits with the pain, Tramadel helps but it sends the mind all over the place. What op did you have this time? let me know what the Surgeon has to say in 2 weeks time, keep well, Regards Paddy.

      • Hi Paddy, I had the Lift op, and yes the staples are agonizing!! As I heal, more of them come out from my flesh, and they’re all linked up. I can’t remove them. They just poke and rub and… well, you can imagine?
        Sorry to hear you’re still feeling pain in your seton. I had the same trouble with my last one. Let’s hope the Professor in London will sort things out for you?
        Good to hear from you, take care. x Meg.

  156. Hi!,

    I got perianal fistula after fainting ! Its continuing still from 6 months…it gives a feeling while it heals but its draining pus/blood/mucus after having meals/breakfast/lunch anything. I have undergone colonoscopy/mri for small intestine, there is no cronh’s. But the fistula is still active like a volcano which erupts after food…! Can you please advise, should I go for the surgery or can it heal by itself….

    • In my opinion I would try TPN treatment before I would do any kind of surgery. With TPN treatment, your fistula may be given the time to calm down and heal. In this way, you may avoid surgery.

  157. Hey I am raj from india I am presently undergoing ksharsutra thread therapy for my high level fistula which is also deep 5 weeks are passed every week there is a change of this medicated thread which does the cutting , curing & healing simultaneously, every week there is a cutting of .5cm so it takes time another 10 weeks depending upon the length we need a lot of patience there is no reoccurrence of fistula for this treatment with minimal pain & no concern of losing consistency comparing to surgery where there is risk of reoccurrence & loss of control over bowel movement

  158. I had my seton removed 3 months ago and healing has been slow, but good. All of a sudden the darn thing started bleeding like crazy last week and won’t stop. My nurse says “normal”, but I am still concerned… I have no pain, just am going thru gauze like crazy. Any advice?

    • Hi MyriahDawn,
      When my fistula began to bleed profusely my surgeon was very pleased. He explained that scar tissue, (healed tissue), bleeds way more than infected tissue. This was a very good sign in my case that healing was occurring.
      I would still check with a colo/rectal specialist, but definitely could be a good sign that your fistula is healing.
      Good luck, Meg. :)

  159. I had fistula surgery last year and I have an abscess beside my rectum, I am still having problems, the abscess is swollen, tender and draining, I’m at such a lose! The doc created a new tract and had to remove fistula and he said I had infection so he had to cut some muscle! I do not want to do this again! If I go back, they will say surgery next week!!! I’m afraid I will not be able to hold my stool if they continue cutting on me inside! I’m in alot of pain, just didn’t know if this is common

  160. I want to know what is the amount of pain after(and during) a surgery of a simple low type of fistula which I have in my perianal region.

    • Hi Deb, all fistula surgery is painful for a couple of weeks afterwards, but it’s always manageable with pain medication, as long as you keep on top of it. Any surgery is painful… I guess each person differs with regards to how they handle pain, and their pain threshold, so depends on the person too :)

  161. I had a fistula flap a week ago & am just checking to see if stool should still pass through the fistula until the external incision heals? Or was the surgery unsucessful?

    • Hi Nicol, if you have stool passing through your fistula after having an advancement flap, you need to go and get a check up ASAP. If it has failed, and they get it quick enough, they can repair the flap. Go and see your surgeon today. Good luck, I hope it goes well.

    • Hi,
      Yes stool passes through your flap for some days. Take sitz bath with potassium granules.
      You can read my experience which I have shared here earlier.
      My operation was done on 25th April 2013.
      Still 3 weeks more as told by my surgeon.

  162. I know someone who has had this surgery but afterwards now he is having symptoms such a nausea, headaches and paining eyes… why is this ? and is it anything serious ? should he be taking any measures for fast recovery ?

  163. Help. Please! I can’t take it any more.

    I live in Southern California. I had fistula surgery on April 5th.

    The surgery went well, and after two months, it healed. Now, after four months, there is bleeding again. It just will not stop.

    The doctor never prescribed antibiotics. He said that it wouldn’t be necessary.

    I went and saw him twice after the surgery. The first post op appointment, he told me that I was healing fine. The second post op appointment, about 6 weeks after the surgery, he told me that everything is okay and that I wouldn’t need to see him again.

    Two months ago, the bleeding started again. I went to his office again, and he looked at my ass.

    He told me that the bleeding was due to an anal fissure.

    When I wipe my ass after a BM, blood does not come out of the anus. It is coming out of the area where the incision was made during the surgery.

    I don’t know how an anal fissure, inside of my rectum would cause external bleeding where the incision was made.

    The doctor started to tell me that I should have a colonoscopy.

    I discussed this with my father, who is also a doctor. He told me that colonoscopy is a procedure which is being done all too frequently these days, and quite frankly, it’s just not necessary any more.

    I told the doctor that I didn’t want to go through with this procedure, and he basically had his secretary tell me that “I don’t know as much about myself as they do.” This is bs. They want to look into my intestine and upper tract, which is not necessary. They just want money. They continued to persist, telling me that I might have cancer. I am certain that it’s not cancer, and that they are now trying to scare me into getting this procedure, which I don’t need.

    I told them that I would go elsewhere for a second opinion.

    I went to USC Medical center and they told me that my insurance is not active, which is a LIE. My insurance is active. They told me that I need to pay 450 USD just to be seen by a doctor. This is ridiculous.

    I asked my father to prescribe antibiotics for me, because I was never prescribed antibiotics to begin with. He refused, telling me that he doesn’t see it as being necessary because I don’t have an infection, which is bullshit, I do have an infection. The bleeding will not stop. I am in pain, and I don’t know what to do.

    I’m getting to the point where I’m about to off myself. I’ll do it, I just don’t care anymore. I’m tired of being manipulated by the US healthcare industry. It’s bullshit. Doctors here are thieves. Maybe elsewhere they are honest and concerned, but here they just want money.

    I can’t afford it, and I don’t care anymore – in L.A.

    • H J… first of all, please take a deep breath… if they said that your fistula surgery was successful, then that is a brilliant thing!! :) If you do have an anal fissure, it’s not that big a deal, yes it will bleed as it is a small tear, and every time you have a bowel movement, it probably tears it again. You don’t need antibiotics unless you have an infection. An infection would mean that there was pus coming out of your bum. Or you have a high temperature and are feeling really really unwell. You might just be bleeding but not have an infection. If you’re bleeding, it doesn’t mean you have an infection and need antibiotics. Try to remember, that taking antibiotics all the time is not good for you, and you shouldn’t take them unless you actually have an infection.
      So your second opinion didn’t go well. That’s ok. Cross them off the list, and go to someone else for a third opinion. If you know that your insurance is active, then I’m sure you will find someone that will see you, just keep trying. I know how frustrating it can be. I went to 3 different surgeons until I found one that I thought had the most experience.
      I’ve had a colonoscopy, and to be honest, you probably do need one. Just to check the fissure etc. There’s nothing wrong with having one, they’re a simple procedure, people have them done all the time. I had to have one to check my fistulas, and to make sure I didn’t have crohns disease.
      If they’re telling you that you may have cancer, you should lay a complaint. That’s completely out of order, and I find it really bizarre that any health professional would tell someone that without conducting any tests and having any proof. Take control of the situation – complain, get the name of the person that said it to you, and show them up.
      Please don’t even talk about suicide. That’s so not cool and really, none of this is worth your life. If you have a small tear, it’s easily fixed. Just be very careful when you go to the loo, don’t wipe, maybe use water for a while instead, there are some good tips on this site about keeping clean without irritating your bum.
      I have no idea what the heatlthcare system is like in America. Surely there must be a doctor near you somewhere that is in the profession because he/she wants to help people. Just keep looking until you find the right one.
      You are fine, you’ll get through this, be strong and take it all in your stride :)

      • Well, I was able to secure a second surgery, for tomorrow. I don’t know, surgery… It’s a cash cow here in the United States. My doctor said ‘Oh, we have to do an encore on this one,’ when I went in for a visit last week.

        I am beginning to suspect that the original procedure was just enough to get me in, and make me think that it was okay, because now he is saying I need to come back for a second, and ‘final’ procedure.

        TO THOSE OF YOU WHO LIVE OUTSIDE OF THE UNITED STATES, IN COUNTRIES WHICH HAVE UNIVERSAL HEALTH CARE: YOU HAVE NO IDEA HOW GOOD YOU HAVE IT. I AM AROUND FOREIGNERS EVERY DAY AND THEY TELL ME HOW GRATEFUL THEY ARE TO BE HERE, UNTIL WE BRING UP THE TOPIC OF HEALTH CARE. HEALTH CARE IN THE USA IS BS. DOCTORS HERE ARE LIARS, THIEVES, AND THEY SIMPLY DO NOT CARE ABOUT YOUR WELL BEING.

      • Yeah I’ve heard mixed reports about the healthcare system in America. I’m very grateful for the health system in New Zealand. Unfortunately, you’ll find that most of the people on this website have had many surgeries, I had 6 before they could do the ‘final’ one. It can take several surgeries to fix fistulas. I would hope that your surgeon is doing what is best for you, and not just trying to make money. And I hope you’ve managed to get a second opinion if you have doubts about your surgeons motive.
        Good luck with your surgery tomorrow, and let us all know how you get on :)

    • Fistulas are an awful disease. Whilst diffixult u have to stay positive. I was also told I dont need antiboditics as have a seton in to drain my fistula, but every 4-5 wks I need them as I am obviously infected as wound area inflamed and really painful. Im on day 4 of them now and I am already feeling better. U know ur own body. Warm Salt baths also help expecially when on antiboditics as whilst this sounds awful, u will see alot of bits of faeces etc that was in the fistula, in the bath. U may also need a colon procedure to habe biopsy to see if u have ibd or ulcerative colitis or crohns. It is a long long process to manage these bloody things I know ive been told ive yrs ahead of me, but as long as u can function day to day including wrking etc thats a good thing. Take care x x

      • Yes, Fistula is a dramatic disease, one never knows when the pain will start, when there is inflammation/bleeding/drainage.

        I think, Fistula is a mechanism by the body to protect from the infection by developing a tunnel to the skin. It buys time so that the surgical activity can be scheduled as per one’s own comfort level.

        I have fistula surgery planned on the 27th Aug 13, have been suffering from this since last 6 months.

        The more we think about the pain current / past or future the more we will be in pain. This disease due to its long life cycle seems to have potential of shifting mindset and getting frustrated, but there is definitely something better for us.

        Farmers don’t grow the crops, they create an environment to get the crops..
        Doctors don’t heal the disease, they create an environment to heal the disease.

      • I couldn’t agree more with most of what you said Chirag.
        However I still think this disease is mistreated by health professionals a lot. I feel like I know more about it than my local GP who seems to take direction from me as to what I need next.
        My surgeon tells me almost nothing about what he’s doing when I am under anesthetic. He also spared a lot of details in the surgical report for my local GP. For instance a total lack of any information about the staples he used??!
        The hospital doctors were not helpful either. In our big city hospitals, you are little more than meat on a bed. (Thank God for country hospitals!)
        Unfortunately I can’t receive the specialist care I need in my local hospital.
        I actually don’t have any idea how my operation went. I have little drainage, much pain and tenderness, but nobody here can interpret those symptoms. (It’s a six hour drive for a check-up with the surgeon. He’s the only one who knows what’s going on!)
        Most of my knowledge comes from sites like this and other medical/university sites on the net.
        So while we may be doing our absolute best on the mental health, diet and hygiene front, sometimes we lack that final cohesion of medicine to complete the healing cycle.
        Most of my frustration is not caused by the fistula itself, but by the treatment I receive (after paying my tax dollar), to receive depersonalized care in the health system.

  164. Week back on saturday i underwent kshar sutra mrthod for my piles doctor has told me that the thread will melt the mass in 5-7 day bt its not melted yet and its damn painfull before going to seat for toilet the effected area hurts a lot and after passing stool it hurts more than before, i take sitz bath with potassium peramaganet ip which gives relife for the time, and i cant pass gas easily because it gives the same pain which i get before passing stool.. by when i can expect my healing i visited the doctor he says the 80% mass has been melted but the pain is very bad i cant take it please revert soon thanking you :(

  165. HI ALL
    had a strange lump in my right ass cheek for a few months.. didn’t want to check it out early. god i wish i did. after many doctor visits and misdiagnosis, the lovely doctors at royal Melbourne finally diagnosed it correctly. a fistula.
    i had my Seton stitch put in last year. it didnt cuase me much pain at all, it came out through my anus and into a whole about 4-5 centimeters above that and slightly to the right. it was annoying to wipe after business, and i had to keep repositioning the Seton so the knot of the piece of string wouldn’t get caught in my… opening.

    had my laying open surgery 2 weeks ago. my lovely girlfriend is packing it for me.. consistently and it’s healing well. but the doctors said there is a bit of fistula tract around my sphincter, which they found during the laying out surgery.
    So going for a ultrasound on my butt, to find the rest and then hopefully a final surgery.

    That is my fistula story, hope all of you get better.

  166. i have this problem for two years.starting i had lot of pain.but after 4 months.my fistula is gone.then im normal i had no problem for more than one year.But now recently three months ago im undergoing this fistula pain and continuous discharge.please give me idea what should be done.what kind surgery is good.or is it possible to cure with medicine?i doubt that it may be a anal fissure.pls give me a clear explanation and difference between anal fistula and anal fissure.waiting for ur advices….!!

    P.S-the pain is fuckin’ horrible man:(…help me out.thanks in advance.

    • Ram, sounds like you should have done surgery to insert a seton and prepare for follow up repair surgery after that depending on surgeons advice.. I had a seton inserted last week, ultrasound to check if muscles will interfere with further surgery to follow and then they will open the roof of the fistula to heal inside out. Surgery is only way as I was very reluctant to let them have their way with my precious ring. I am in for a few extra procedures but there is no other way other than leaving it and possible new fistula branches in other areas. read up fissures on google for your own benefit.

      good luck.

  167. Hi all , this is all new to me. I’ve recently been diagnosed with having a rectal fistula and I’m getting lots of stomach pains on and off as well as lower back pains. Is this part of the course with this sort of thing?

    • Hi, I have an anal fistula and when I have an infection I would have stomach pain like spasms qhich are very painful and result in vomiting. But it does settle within 24 hra or when I start antiboditics. Hope this helps x

  168. hello my name is jeevan,23, from india. my comments may seem irrelevant i mean they wont be much scientific but more of faith. i’ve suffered for about 3years with this shit. i dont know what kind of fistula am effected with but it appeared near my left butt close to the region where we put on belt(pants). i consulted my family homeopathy doctor. he gave me some medicines. i dont remeber the names i will post them assoonas i remember them. coz of using medicines i experienced only a little amount of reduction in the green pus. days later i observed a cut into my body beside the fistula. i was struck with terror. i began losing weight. became skinny from above average structure. the cut began to go grow deeper and i’m out of words. then i used a powder called vibhuti considered to be holy, it’s from our local god shiridi sai, and i began pouring that powder into that cut without fearing of consequences but keeping only faith. wonder.since the day i put that powder there the cut began to heal,the infection stopped, pain has disappeared. i dont know how this can help my fellow guys suffering from this irritating sick fistula.i just wanted to let u guys know there are even these kinda cases around.i only used two different medicines in my whole medication time and this vibhuti. my indian frns can get this more easily what vibhuti is. hope everyone recovers from this shit asap. i knw how this makes us.but one thing, after 2 years of my healing now i began to gain my body again.so i am gained by my faith in god, but u guys do some research on homeopathy medication for fistula and use them. they are far more bettert than these surgeries, it will take time but no sideeffects and no recurrence assured. thank youuuuu!

  169. hi everyone, do someone here experience having a swollen lump on the right side of the anus pop out? recently a past 4mos iam undergo on incision and drainage of abcesses the surgeon said that maybe i have a fistula in ano, (there not sure about it) then after 4mos i feel the same SEVERE PAIN in that area, for about 1week iam not able to walk to sit even to lay down, i can even sleep, theres no position that iam able to sleep, then after 7 days of being torture the lump suddenly pop out, about 2-4cm long, and a sticky mucus like came out, my underwear almost soak in it, and miraculous it lessen the pain, from 100% to 50% i am able to sleep, to walk, and to sit. then the second day, from 50% down to 25% seriously what the heck happen? i consult in my surgeon and suggest me to undergo again on another surgery and this time they put a seton or what ever, pls guys im 85% relief now do i follow the surgeon suggestion? pls i dont want to go in the hospital again and putting a huge amount of money in that surgery, were poor, and guy i always update you on my current situation by the way sorry for my english im from philippines

    • U r best to get the seton to stop the fistula reabscessing. Long term setons are ok to manage and surgery a quick recovery its managing reinfection of surrounding tissue that is a nightmare. Take care

    • Francis- where in philippines are you? I am from philippines as well, i have a good doctor taking care of me, i have gone through only 3 surgeries, and managing fistula quite well for the past 7 years, maybe i can help you, i still have fistula discharge but very little and no smell, bearable pain too

    • Hi, I’m from Philippines also, I went Fistula-in-ano last September 26, 2013 in World Citi Medical Center (in Anonas, QC) under Dr. Ramon Badillo. As of now, my wound is not deep that my wife could not place a gauze anymore. Please see my post below for my complete experience about this disease. :) God bless!

  170. I had an anal fistula for over two years. I just had a fistulaotomy on July 2nd, that’s 43 days ago(and counting!) and everything seems to be healing really well.
    I have had 3 follow up appts with my surgeon, every two weeks. The first I was told to stay inactive and let it continue to heal. The last one I was told to get back to my old routine as best I can.
    I have begun to build my strength up, by going for short walks and venturing out little by little…
    This is embarrassing, but I was wondering if anyone could tell me when it would be safe to have sex again…
    Please get back to me, thank you!

    • Hey there, how’re you doing? Still healed? I had my fistula laid open 14 days ago and its good to hear success stories…. Can I ask if you had any gunky discharge within the first few weeks? I’m desperate for this to work and am worried as its the same stuff that’s been on my swab for the last 18 months….worse after going to toilet. Also, did you get an answer re sex…?! Nowhere near yet as wound still open but we’d like to start a family but I’m terrified I’ll make it worse….!

      Hope you’re still doing well :-)

  171. Hi Guys,

    I have a scheduled surgery for fistula tomorrow. Any ideas, how much tentative time should take leave from work to get it healed ?

    Chirag

    • Hi Chirag… Which procedure are you having?? Are you have a seton placed? Or something else like an Advancement Flap or plug surgery? It depends on what you’re having. I used to take 2 weeks off work when I had seton placement surgery. And for the Advancement Flap, I took 4 weeks off. Good luck with surgery tomorrow, let us know how you get on! :)

    • Chirag with my first seaton placement I just took off Thursday Friday and the weekend so 4 days and it was horrible my second seaton I took the Thursday Friday weekend and Monday Tuesday so 6 days and it was so much better. I don’t know if some of that was because I knew how to manage the seaton the second time around or just the extra two days helped. For my flap surgury I was out 6 weeks. My doctor at first said 3-4 weeks but when I explained my job (home health OT so in and out of the car 10-15 times a day) she made me stay out 6 weeks. And mentally I was ready to go back at 6 week but physically I wish my work did not mandate I return full duty would have been nice to do half days at first….

      I do think all types of surgurys are different and each person is different. And the type of job you do greatly effects your ability to return….but don’t rush it….I now look back and wonder if I took another week or two would my flap not have failed….

      • Hi Rachel
        I had an advancement flap done 6 weeks ago and am feeling really good. I only took 3 weeks off but should have taken 4. I’m just wondering how long after your surgery did your flap fail? And when it failed did you know straight away? Did you need to have another seton? I’m also wondering about returning to exercise. I’m currently walking but don’t want to do anything to harm the flap
        Jane

      • Hi Jane.

        I have a complex anal vagional fistural with lateral tracking.

        I had my surgury aug 21st 2012 and April 2013 my doctor said we had to concider options. My follow up in sept wentas she thought things would go. She cleared me to go to work for the first of oct 6 weeks after surgury. I tried to start working out at that time with my trainor but things did not go well I was very light headed and things were pain ful with sitting. After a week back at work I started to have pressure again and pain started to build up and then started my string of antibiotics. I would go 7 days on them 5 days off them at the end of oct I saw my cr again and she decided to do a 14 days on antibiotics. I was so excited that when I went to see her in nov I had only done that last 14 day on them. But I still had one small area that just would not heal. She spaced my next apt for two months but I only went 6 weeks before the pain came back and I was on antibiotics again….in April when I got a blister at the end of the lateral track she decided it was time to go in and explore when I woke I had the seaton back in and she drained the lateral track again. My last surgury was may since then things have been pretty stable. No problems with my lateral tracks. And no antibiotics since may. I do get 3-4 days of issue each month not really sure why its normaly 5-6 days before my cycle begain not sure if related or hormonal some how.

        Through out the 6 months my doctor kept saying give it time it just take time she said she has had people go 4-5 months with issues and there flap does not fail. After 2 months she told me to return to 100 percent of what i was doing exercie, sexural intercourse, ridding my motorcycle. she said that that point if it had not failed it would not cause it to fail. if i could tolerate the pain have fun. She was hopping if we could stop my body from infecting long enough the area would close but it was stubborn. Again it is a very complext fistural with multiple tracks.

        I wish I had done some reacher about food choices prior to my first surgury. I do not have chrons or ibs so I never thought food would be effecting the area. I have been gluten free and dairy free since April and I think it has been helping. At this point I plan to keep the seton in place to I get pregnant and deliver then will figure out the next step. Sept will be a mile stone month for me of three months with no antibiots or pain meds so I will be clear to start trying if all stays stable. (Going to be a long 3 weeks :)).

        Sorry long response.
        Rachel

      • Hi
        Thanks so much for your reply. Gosh you poor thing you’ ve really had a time of it. So it sounds like ) weeks isn’t very long and things may still go pear shaped. I think I’ll leave exercise for a while longer, I’m not really up to it now anyway.
        I hope things start too look up for you and that you don’t need ABs or pain relief
        Jane

      • Jane,

        Things do seem to be looking up some…may be my attitude to some….my doctor as told me she will heal the beast (fistural) she can’t tell me when. She said to live my life and just enjoy…. I do still at time get frustrated/angry/tearful…..but I allow myself a coupld of hours then either go to bed and start the day on a few foot in the morning or go exercise to get rid of the anger….and I always tell my self….this may suck….be painfull…depressed….but it’s not terminal.

      • Hi
        Yes it’s much the same with me. It’s been a yr and I’m up and down, but overall just have to live with it.
        Take care and I hope things continue to improve for you
        Jane

    • Hi Craig
      For seton placement I took 5 days off work. For the flap surgery I took 3 weeks but should have taken 4. I would recommend part time for a week or so when you do go back

    • I was operated on 25-4-13. High fistula in ano with lay open (fistulotomy). Still recovering. Rest min. for 15 days & dont forget to take sitzbath atleast 2 times a day. If u really want to recover and avoid going under the knife again. Ofcourse u will need to hv loadz of patience….which I sometimes lack. Avoid spicy food as long as u can if u r a foodie.

  172. I had the LIFT procedure done almost 5 weeks ago. The last 2 days I have had some bleeding and and pain. Are these signs that the procedure wasn’t successful?

    • Well My Last Surgery In Jan If 2012 And EverY Time I Have Pain Its Usually A Sign Of Discharge. I Hope The Rest Of You Are Doing Well. :)

  173. Bula from Fiji…since the initial swelling three years ago, I now have Fistula in Ano with three openings but still can kayak and go out fishing all day, in other words mobility and flexibility is still very much there with a bit of discharge now and then…everyday pain has diminished over the last two years and is not as bad as it was when I underwent surgical drainage in 2011…now, I’m booked to have Proctoscope and Fistulogram in Ano next month in NZ…consultant here in Fiji thinks it will definitely need surgical procedures after that…so I’m just wondering whether any of my fellow bumtulas out there is actually fistula free POST SURGERY regardless of the procedure you went through…is there a definite or indefinite healing process…and has anyone being worse off then b4 in terms of mobility and managing pain AFTER SURGERY??…yr feedbck wil b mch apreciated

  174. hi fellas, 1wik after the swollen in my butt pops out and my life back to normal again, dont want to put a seton or whatever like my surgeon said its pain in the ass also pain in the pocket, by the way, a quick recap, april 15 13 i undergo on surgery called incision and draining thing, and the surgeon said that i had a fistula in ano, months later this aug 5 13 i have a lump in the butt were the cut was, then aug 15 the lump suddenly pops out and feel relief afterwards, now 7 days later im still ok and hoping that it last long or if possible forever

    guys, im not a doctor but who ever had a fistula in ano out there just drain the pus and if it occurs again, try to drain it again, im not going for seton or thing like that, just want it to drain and drain and drain till the pus nor i surrender

  175. Hi

    M suffering from fistula since 20 yrs .have nt taken any treatment as yet.suggest me the treatmnt and thread treatment isnt painful.how long do u.have to take bed rest

  176. Francis, i am in the philippines, it is not ok to just let it be, i used to experience the same thing as you, having abscess that will pop after a week or so with lots of drainage and pain that i could hardly sit or walk, i had a surgery for fistula, and a sphincterotomy back in 2006, i do not have incontinence nor do i experience the same kind of pain that i did prior to surgery, i do not have chrons, nor any underlying disease, just a “pigsa” as they call it here hehehe! Turns out the pigsa is a real pain and is connected inside the rectum, so now it is called a fistula track, now i do not get very big abscesses, just a small pimple like swell that only lasts a day or two then pops with very little puss, i am basically back to normal doing things i used to without worrying that i will be sick for a week, my only hope is that this little pin hole will not close, it keeps me pain free. My doctor is from ust hospital, we are planning to get an ultrasound to see how deep or how small the track is, talked about a possible LIFT surgery as well, but not in the near future because i plan to have kids first. I can help you because i’ve been through what you are going through, i got better in 3 years and now i am on my 7th year :)

  177. Hi. My 5 months old baby is diagnosed with fistula in ano. The surgeon said that my little boy will need surgery as he is 99% certain that the fistula will not go away by itself. My concerns are: 1) will it recur again after my lil boy had the surgery 2) what are the side effects from general anesthetic to be done at such a young age 3) any complications during and after the surgery? I am not sure if I should wait till he is bit older but before he starts school. :( I am worried as he is so young and can’t tell me how he feels. Appreciate if anyone who has a LO who has suffered the same condition. Tq.

    • Hi CC, oh my goodness, you poor thing, I have never heard of a 5 month old baby needing fistula surgery. Those questions you’ve asked are really questions you should be asking your surgeon. I would get 2 other opinions from other surgeons as well. Surely it would be better to wait until he’s a bit older? It depends on how bad it is. I really think you need to go and see other surgeons and get 2nd opinions before you decide to do anything. Keep strong x

      • Cc I agree a second opinion would be good and ask lots of questions. I know with me, I am older then 5 months so not sure if true for younger, but as frustrated as my fistural is now the pain is better then it was prior to my first surgury. I also had a no swimming or submerging in water recommention made until my seaton was placed. My doctor said it could make it worest if dirty water got in. Just another question to ask. Also if you wait will the discomfort of the pressure from the fistural effect his development milestones like sitting….and sitting and reaching? (I am also a OT so just a thought knowing my limitation as a adult with a fistural. I can’t sit on the floor and stretch at the gym for any length of time)

        Hope not overwellimg more just food for thought and things to ask the doctors….

  178. The surgeon said it is best to do when my LO is healthy and strong instead of waiting till when there is an infection. He also said that to do it before my LO goes to school to avoid embarrassment if he has leakage. I remember the surgeon said he will cut and leave it open to heal but depending on the complexity of LO’s fistula. I have asked several medical related people including the surgeon himself about GA on a young baby and all responded that GA is not a problem. I will try to seek for 2nd opinion. I live in a very small place (Darwin, NT, Australia) where medical advice is quite limited. At current stage my lil boy doesn’t seem to be in pain but I do notice that the extra opening is getting more obvious. Sigh. But thanks for support.

    • Hi CC, can you not even just phone a few different surgeons? I live in New Zealand, and I got appointments with 2 other surgeons for second opinions, and on top of that, I also phoned 2 other surgeons, one in the south island and one in Sydney for other opinions. Do some research on the top Colorectal surgeons in Australia for infants, and phone their receptionists, and ask them if you can have a ‘phone consultation’ to ask their opinion. You may need to pay for it, you may not, depending on how long the conversation is I guess. I think you really need to make sure you are armed with all the information and advice you could possibly have.

  179. So now it’s been almost a year with my anal fistula. Last year I had a draining seton for several months then a advancement flap procedure that has failed. A second opinion with another surgeon including another MRI, ultrasound and the surgeon says the tract is too short for another Flap or LIFT procedure. He recommends a cutting seton. I have a zero tolerance for pain and am concerned about tolerating a cutting seton. Feedback anyone?

    Tony

    • Dear Tony,
      Sorry cant offer advise on the cutting seton but would like some help from you if OK.
      I have a draining seton inserted now for just over a week and plan to leave it in for a couple of months after travel which was preplanned before the abcess was born in my behind. Can you please tell me why the advancement flap failed as my surgeon wants to do this as the next stage as they have done with you. Also how long did it take to get to a stage where you could operate normally ie after packing and ability to get back to work etc.
      If anything, you have persevered with the flap procedure so a cutting seton should be pretty much the same ordeal in relation to pain threshold.
      If the flap is too short it must mean that previous surgery helped heal some of the tract?
      As you are a couple of stages ahead of me I am very interested in your experience from here on until you are cured totally. Which I wish for you asap.

      • Thanks for the comments JMAN. As for why my flap procedure failed nobody can say for sure. Even under best circumstances flap procedure has about 75% chance of working and it is considered the gold standard. Some folks on here have had successful flap procedures. My doctor had me stay at home for three weeks after the flap surgery. When I got back to work after three weeks it was probably another four weeks before I felt much better and was walking normally, not using a seat cushion at work, and the majority of draining and pain subsided. The pain was rough at times the first week after the surgery and Vicodin wasn’t helping. Percocet finally helped. Slowly the pain eased up and became more manageable. After about 2-3 months past the surgery I was able to get back to most of my regular activities but the external opening wasn’t fully healing and still drained sometimes. My surgeon did two exams and said it failed and I would need to have the same two procedures (draining seton the flap). I asked what we were going to do differently the second time to help ensure success. No response. So I went to another surgeon for a second opinion. He’s the current one suggesting the cutting seton. The flap procedure is bearable just be sure to get good pain meds after surgery. Stock up lots of movies, books, entertainment and healthy foods that don’t irritate your colon. Take as much time off after surgery as you can to give it a good chance to heal. Like I said, many folks here have had successful flap procedures. It’s different for all of us. Best of luck and message me anytime with questions :-)

        Tony

  180. I’ve been diagnosed with a connective between my rectum and bowel. Now waiting to have a barium meal to see what type of surgery I need. The lower back ache I get occasionally I can cope with, the odd tummy ache I can cope with but is tiredness part of all of this. I’m getting really tired and at times find it a struggle. Is this one of the symptoms?

  181. IN 2007 I WAS DIAGNOSED WITH ANAL FISTULA 2MM PIN POINT NEAR ANUS AND WAS DISCHARGING PUS AND BLOOD..I BEARED IT FOR 2-3 MONTHS BUT MANAGED TO GET SOFT TOOLS BY ADDING FIBRE TO MY DIET.. THIS EASED THE FISTULA WHICH IS NOW DRY , NON ACTIVE , NO PUS , NO BLOOD. ( PUS MAYB ONCE A YEAR)
    MY ONLY CONCERN IS SHOULD I GET IT OPERATED NOW? CAN IT HARM INTERNALLY WITHOUT ANY ALARMING SIGNS ?
    KINDLY REPLY ..

  182. I am a Sierra Leonean and my son is surfering from ANAL FISTULA and he is 3years old. Should i take him for a surgery or wait for a while. If no what shoild be the reguired age limit for a surgery? Thanks

  183. I posted on here a while ago, last month. I had a second fistula surgery on August 13th. It is now September 5th. For the past few weeks after the second surgery, I thought it was well on it’s way to recovery. This morning, I noticed a large amount of blood during a bowel movement. It’s so frightening, especially when you don’t have health insurance. It has been almost one month, and I’m bleeding again. I have been using a sitz bath like mad. I have been keeping the wound clean with witch hazel. I have been keeping it dry and getting rest. I have been eating soft foods, no spices, cut back on beef and other meat, and incorporated more fruits and vegetables into my diet. I don’t smoke, I don’t drink. I’m bleeding here. What is wrong? Please help!!! It has been two surgeries, I am bleeding, and I am surrounded by people who simply do not care and this is seriously beginning to cut into my work life.

    My doctor wants to see me on the 17th. I was turned away from another doctor who wanted 400 USD just to see my ass. Seriously, it’s so messed up here in the USA. WE ARE IN TROUBLE! HELP! PLEASE! In the event that this is indeed a recurrence, is there another way (non invasive) to eradicate this god awful condition? I feel like my life has been taken away from me. It’s the worst feeling in the world. I think this might be cancer, which really scares me. My doctor told me that it is not cancer, but I don’t know if he really knows what he is talking about.

  184. Hello Guys !

    I got my Fistula Plug 10 days before.. After bowel movement, it seems I am cursing any food I take…its a nightmare..cant sit, cant stand for at least 2-3 hours after each bowel movement.

    I would like to know if anyone has followed 100% liquid diet just to not use the problematic channel and giving it time to heal. If there are any links/guidelines they are more than welcome.

  185. Hi — Wanted to provide a quick story about my experience. It wasn’t as bad as some, but I lived with needless discomfort and worry for much longer than necessary. Go to the doctor! Symptoms were bleeding (sometimes only a tiny bit on the toilet paper, sometimes a lot visible in my undergarments which made me reluctant to wear light colored trousers…), discharge, and pain which made it uncomfortable to sit, all on an intermittent basis. Sometimes no noticeable symptoms, sometimes very severe. This lasted for at least a year, probably longer. Finally I went to the doctor. At first, the doctor thought the problem was hemorrhoids and provided treatment for that. Wasn’t the issue. Eventually after a few visits he figured out it was an anal fistula, not very high, so that was good. I had surgery to lay it open, outpatient but they put me under during the procedure. The procedure was in March ’12 and it gradually healed until the area was relatively normal by June. By that point it didn’t require any special fuss with respect to bandages, cream, etc. Now more than a year later and no sign of recurrence (fingers crossed!) Area has healed up nicely. So my advice, go to the doctor sooner rather than later, and don’t take “hemorrhoids” for an answer if your symptoms are not getting better.

    • Glad to hear about your healing. Have a quick question please. Do you have Crohn’s Disease?

      • Hey guys I had it done Friday morn and it is now Sunday the doctor said a number of things causes these things but mostly it just is simply a stoped up glan I was put completely under for the surgery and thought the worst I was so scared but no big deal now a little pain not much though. Before I went in I thought I had chrons and all that is is when’s your bowels r iflamed its not going to kill you but you prolly think it will but if you have a fistula go get it taken care of

      • Hi Julie — No crohn’s disease. At least never diagnosed with crohn’s disease.

  186. I managed to cure my fistula by following the Specific Carbohydrate Diet. I learned about this method through this site. I have left a lengthy comment on The S C Diet page – look for it in the sidebar on the right.

    I would like to thank the owners of this site again for alerting me to this remedy.

  187. Hi. M also suffering from fistula. Can anybody tell me about kshar sutra ayurvedic treatment ( post treatment effects) and center to go for it in Delhi…

  188. Hi to anyone who can help with any advice or comfort for what seems to be an extremely pain staking journey for my 14 year old son over the past 3 months.

    He had a perianal abscess (cavity of a tennis ball) surgically removed and soon after still had excruciating pain to find under MRI 2 fistulas for which he had further surgery to have 2 seton drainage bands in place. He is still in so much discomfort and we have been in and out of hospital as doctors can’t go anywhere near the wound to review him without him having a GA to ensure that things are progressing (which they just don’t seem to be). We spent another 5 days in hospital last week as the surgeon removed the smaller band and left the large one in as said it wasn’t healing as quickly as it should have (what is that supposed to mean) and doesn’t seem to be able to give me any set time frame. He has had a large amount of bleeding in between these so called recovery weeks.

    This has been going on now for 3 months and my son has not been at school for this period of time as he can barely sit down and has constant spasming in the rectum/wound area. He has been tested for Chrones and appears no positive answers as yet and waiting on a final biopsy.

    We are so frustrated as I see my son in so much pain and on loads of pain killers and just not getting any better……

    This appears more common in adults and wondering if anyone has experienced this with their teenage child and perhaps give us some hope or reassurance that things are going to get better.

    Please if there is anyone to shed some light on this, we would be truly grateful as I am losing any hope with the medics at this stage as they really don’t have any answers and do not describe this as normal.

    Thanks

    M

    • Hi M, so sorry to hear your teenage boy is going through this. At least, I guess, he is young, so has a great chance of healing quickly. You really need to do your research and find a top notch Colorectal Surgeon in your area that specialises in Fistulas. If you have medics that can not give you answers to your questions, well, that’s not good enough. To be fair, they can’t give you a time frame, as it all depends on the individual. I was told that my setons would be taken out in 6 weeks…. 2 years later, I still had setons in place. What you have to come to grips with is that the road to recovery from fistulas is a very long one, with probable multiple surgeries. If your son does not have Crohns, then that is another massive bonus, as it’s much harder to fix fistulas with a Crohns sufferer. All I can say is be vigilant, get 2nd and 3rd opinions, and try to understand that this is not a quick fix problem. What will probably happen, is your son will have the setons in place for some time, until the tissue is healing and the pus etc is all drained, and then your surgeon will talk to you about the next step in surgery. Learning to live with the setons for now is the best thing you can do. They are there for a reason – to drain and heal. They are difficult to live with, but as long as you keep the pain under control and are extremely careful with hygiene, you can get through it. Read some of the other posts from people on this website. Hygiene (showering after each bowel movement) and diet are both common denominators to recovery. Good luck, and let us know how your son gets on. Find an incredible Colorectal Surgeon near you – call, google, talk to people – do what you need to in order to find the right surgeon for your son. I went to several surgeons until I found the right one for me – one that answered all my questions, and in the end, fixed me.

      • marie,

        I have just had a seton inserted recently and experience minor drainage. An ultrasound has been arranged next and I suppose to determine if surgery will incur incontinence risks.

        After reading your interesting post, I have a few questions.

        Can you please tell me if you still have setons in place after 2 years and if that is what you mean by ‘fixed’?

        Have you been offered surgery by your surgeon at any time? if this is planned will you consider surgery?

        Also how many setons have you got inserted.

      • Hi JM, I think you were directing the questions at me?? I don’t have setons anymore, I don’t have fistulas anymore, I had setons in place for 2 years, I had 6 surgeries to replace setons, and then I had the Advancement Flap surgery, which was successful – and therefore I was ‘fixed’. I didn’t even take the time to consider surgery, I just went with what my surgeon said as I trusted him implicitly, he is the best in the business where I live. I had two setons at once, but they were changed 6 times over 2 years. I didn’t start healing until I changed my diet. Only then was I ready for the Advancement flap ‘fixing’ surgery. Setons are there to get your tissue ready for such surgery. They let the tissue dry up, drain, and become healthy enough to do the next stage of surgery.

    • My teenager had almost the same situation and also missed a a lot of school. It took a lot of tests that in the end were useless, white cell nuclear scans, xrays, barium xrays, Prometheus and more. The only test that finally proved he actually had Crohn’s was a colonoscopy. This test showed proof positive and we even had pictures showing his disease. As far as the fistula, he still has it, but it is much smaller. It was quite large with a lot of discharge and he had 9 surgeries on it. Then he tried a wound vac. pump and that helped reduce the size. It reduced the size by about 90%. No more packing the fistula, but he still has it. He takes multiple showers everyday and sometimes does epsom salt bath soaks. Hope something I told you helps. If you ever have any questions, don’t hesitate to ask. Wish i would have had someone to talk to.

      • Hi Julie, as awful as it sounds comforting to know that other people are going through this and there is some hope in sight.

        We are back in hospital as the perianal spasms were so intense and his pain levels through the roof. He is currently on opioid medication intravenously and other heavy oral medication.

        Results from last weeks biopsy now suggest Chrones, so they are going to start treatment on this today/tomorrow and hope this settles the perianal pain. I just hope this settles everything as he is feeling quite unwell as a result of all the medication on top of everything else. It appears this will be a long healing process due to the chronic/complicated abcess/fistulas.

        Truly just want to have everything back to “normal” as he is such an active outdoor fun loving teenager and unforunately is really getting down on everything, missing school and all his mates. We’re all missing his gorgeous happy personality as it gets consumed up by pain…. Feels so unfair and you hate seeing your children go through so much as you would understand.

        Thank for your reply and hope your teen makes a full recovery soon :)

        Regards

        M

  189. off to have flap procedure this morning, had fistula since perianal abscess in 2010, had surgery to lay it open, but abscessed again. lift surgery 6 months ago, still no luck, didn’t heal, off for flap surgery this morning. as you can imagine..alot of time spent researching this rigmarole over the past couple of years and thought it was time to contribte, so thought i would run you through the process this time around.

    • Hi Marcello, good luck for Surgery this morning!! Let us know how you go, if you write details on here it will help others who are going to go through the same thing. All the best :)

    • Hi, I,m off to see a Professor on Mon next, the only op i have not had is this advancement Flap, so will be interesting to see how you get on, I hope it,s a positive outcome, best of luck , regards Paddy.

  190. Ok after my flap procedure failed I am now scheduled to go in and have a cutting seton put in. Doctor said that it should cut through in 4-6 weeks and he would probably have to tighten it in his office (without anesthesia) at least a couple of times. I have zero pain tolerance and this scares the hell out of me. Surgery will be in October. Any advice is appreciated.

    Thanks

    Tony

  191. Hey m frm india nd i hv fistula between the legs just below the testes and it has one opening inside the way of human waste ..Hips.. and m suffering from this from last 5 years … so someone please suggest me what i do ???

    • Hi Mohit,

      I went for surgery for fistula plug, it seems good so far still in recovery phase. For better healing I am taking cold milk+lemon two times a day, practicing ashwini mudra as comfortable, taking only milk diet..smoothies in daily food, it seems its helping a lot. There are also acupuncture points Ramdev recommends which relieves from pain and also helps in recovery.

      Have faith and it will be all over.

  192. Hello
    First I apology for any written mistakes I can make, I’m French speaking!
    So here is my story: I’m a 28 yeard old guy living in Canada. I never had any major health issues, not even minor health issues! I’m healty, do lots of sport, do not smoke, etc. The only thing I ever had (that might be related?) is anal fissures. They tend to come and go, but last year was pretty much without any fissures. Anyway, last June (around June 2nd), I had a major anal bleeding. I tough it was related to anal fissures, altought it was pretty serious bleeding. So I went to the doctor and been told I had Hemorrhoids, and got a prescription for a cream. Bleeding went away after 3 weeks. At the same time bleeding went away, I start feeling a little ‘’bump’’ close from the anus. I taught it was the hemorrhoids still. At the time I had no idea what was an anal abscess or a fistula or anything like this. So the bump got bigger and bigger, and then the pain started. At first it wasn’t that bad, but it got worst quite fast. It got to a point that one day I had difficulty to walk and almost passed out when I sat in the car as it was so much painful. That day (around July 6th) I decided it was enough, and decided to go to the doctor the next morning. During the night, I woke up with my underpants totally soaked. Remember, I was still thinking I was having an hemorrhoid. I was thinking that my hemeroid ‘’exploded’’ or drained by itself. There was an obvious small opening at the top of the bump, blood and probably puss has came out of it while I was sleeping. Automatically the bump was way way smaller and the pain was almost all gone.

    This was kind of a relief. I still went to the doctor the next morning, explaining pretty much what I’m writing above. She checked me and told me : this is no hemorrhoid, this is an abscess! She prescribed me antibiotics and told me that ‘’nature’’ drained it by itself (as it pierced during the previous night). So I took the antidiotics for the next 2 weeks or so, the bump slowly went away. HOWEVER, the little hole never went away. As the ‘’matter’’ under the bump seems to go away, the opening kinda got worse. Puss or liquid was still getting out of it, I was thinking ‘’it is still infected, cleaning it will heal it with time’’. So time went by, the pretty much all disappeared. The ‘’whole’’ was however growing bigger in size, wich started to worries me. Also, I started to have the feeling I was having a little feaver. Nothing bad, just a little feeling of being hotter than I should be. Just anoying, nothing that can stop me in my day to day routine. Anyway.

    On September 2nd I went to see a different doctor (this is the 3rd one) to get occulted again. I taught I might need antibiotics again. He check me up, and told me that I COULD have a fistula. He clearly saw what the wound was not healing by itself, but coulnd say that is was a fistula. He told me to take an appointment with a proctologic (wich I have on October 2nd) to get a better examination. He also told me to take a ‘’butt bath’’ of warm water mixed with house bleach 2 times a day for 20 minutes each time. This would help disinfect the wound.

    So: I’ve been taking bath from 1.5 week, it definitely helped!! The wound is getting smaller and smaller. It however still drain a little puss, but nothing like it use to be. The ‘’feaver’’ went away. I’m crossing my finger that I do not have a fistula. IMPORTANT POINT : I have literally no pain at all. Anyone here suffering of PAINLESS FISTULA? Is it possible to have a fistula without any pain? Also, sometimes when I got to the bathroom and have a bowel movement, I find a little trace of blood on the paper, clearly coming out of the wound. Sometimes it’s light red, so I figure it’s not exactly blood but not puss either. Any taught on this?
    Many thanks in advance!

    • Hi,
      I can co-relate my case with yours. Having this drainage near the hole for the past two years. Initially as it happens with everyone, went on to see the doctor and after initial antibiotics he suggested to see the surgeon which I did. The surgeon told me that the chance of success is 70-80% so didn’t take any chance and living with it since.
      For the past two months I am strictly on scdiet and have seen very encouraging result. As the book BVTC says it took years to reach where you are so need to give enough time to roll back to normal. The main benefit of this diet is you pass your motions without any fuss or putting any pressure. It eliminate the bad bacteria thus help in reducing mucus which is the main enemy of any wound. There are so many positive side effects. Your skin become healthier, you feel good inside and light.
      I have decided to stay with this diet as long as I can and would continue to update my status here.
      BTW I have no pains, take regular sitz bath and living happily.

  193. fellas try PROVIMIN (spirulina) dietary supplement it helps my fistula heal

  194. So…Sunday night, 3 nights into recovery from flap surgery. First things first….very tender! And wow does it look technical down there. My life revolves around going to the toilet @ mo, bit constipated so it has been struggle. Literally only eaten fruit and soup thou, must be tramadol! Just wondering if this flap will stand up to the pressure? Anybody no from experience? The external site feels like bit of pressure pain there, wat is that tellin me? or am i too paranoid three days in? my doc is a shower school of thought so wondering how they stack up against baths? Just rolling off information and questions for any body to get involved?
    Mental game overload with this recurring fistula rigmarole, so am very appreciative of not only finding you peeps on here but to compare and contrast stories. One love

    • Hi marcello
      Day 3 is still very early days. I had flap surgery on 11 July and am pleased to say that so far so good. My advice is to ease off the tramadol if you can as that constipates you and will make things harder. I used stool softeners and they worked ok. I had showers but after each BM I had a quick swish with a salt bath. I got a sitz bath which sits in the toilet bowl so very easy. I only took 3 weeks off work and my other advice is to take longer. At least a month. And rest. I didn’t really leave the house for 3 weeks except for a few strolls around the block and in the third week I went out once or twice for lunch. Basically my surgeon said that you can’t predict who’s flap will take and which ones won’t. But rest and good BMs are best.
      It gets better. Two months down and I’m back to normal life, with no fistula which is awesome. I know it may still fail, but I’m feeling really positive at the moment
      Take care
      Jane

    • Hi Marcello, congrats on getting through flap surgery! :) I took 6 weeks off work and hardly moved for that 6 weeks. My flap was successful. I also took stool softeners, as the pain medication does make you constipated… obviously anything that’s putting pressure on the flap is not good. To be honest, it took me a good 6 months to feel fully recovered, but I’m still fistula free. Take it as easy as possible, don’t sit on your bum, I used to lye on my side a lot. And don’t do anything strenuous…. plus lots of washing down there!! Good luck, and let us know how you get on! :)

  195. Francis, how is your fistula? Does it still hurt? Do you still get abscess (pigsa) and swell?

    • until now no, im fine now, doesnt hurt no abscess and swelling at all, i think that Provimin ( SPIRULINA) dietary supplement works on me, and my mom makes me a glass of boiled guyabano leaves every day,

  196. Hi….. My name is Osis….. first of all I want to thank you for this site, I have a fustula infection in my buttocks just next to my anus, I have suffered with this disease for several years, it pains at time, frequently itches and very embarrassing to scratch where it itches, at times pus come out of it, it wets my trouser even if I am at work and people ask me why my trouser is wet, sometimes it swells and my body gets alot of fever, I had a surgery 2 years back but the fustula has resurfaced, I am now tired of this disease what advice can you give me please or what can put an end to this disease, then what side effects does it have? will it affect my reproductive health???

    • Hi Osis, Where in the world are you?
      You say you had surgery 2 years ago… what surgery did you have? It sounds like you need to see a surgeon…. Are you using pads to soak up the pus so that your trousers don’t get wet? I’m sorry if I’m stating the obvious.
      Are you a male or female?
      No, fistulas don’t affect reproductive health. If you’re a female, and you get pregnant, it’s likely that you would need to have a c section as opposed to having a natural vaginal birth. If you are a male, no it doesn’t affect your reproductive system.
      My best advice to you would be, don’t put up with living the way you are. See a specialist and start to formulate a healing plan.
      In the meantime, there are lots of things you can do to help live with your fistula, such as wearing pads in your underpants so your trousers don’t get wet. And natural dietary means to help heal yourself, or to keep the infection at bay until surgery.
      If you are having fevers, then that generally means you have an infection, and you probably need to go on a course of antibiotics.
      I do hope that you are regularly seeking advice from a professional…. :)

      • Hi fistula support, thanks for the prompt response, I am Osis and I am a man I come from Kenya in Africa, I think I should go for a specialist, and if I may ask what are the pre and post effects or even the advanced effects, can this disease kill someone?

    • Hi Bruce, Meg etc, This problem can mean having a number of op,s I have had all the op,s possible except the removal of the complete Fistular, well I saw a Professor in London on Mon, he is going to remove the fistular plus an amount of the sphinter muscle which the fistular is laying in, this should rid me of this horrible problem, yes every day my pants get wet, try wearing two pairs, I take Tramadel for the pain when needed, you must keep onto your Doctors all the time, this will take time, my op is not until 2/1/2014, the Prof is very busy, I feel the light at the end of the tunnel, it will be nearly 6years then, I am looking forward to resuming a normal life then, fishing, camping etc, and i will be 70yrs in the May. Keep onto the doctors and surgeons, Regards Paddy.

  197. I am looking some advice.

    I have had nine surgeries for high cmpkex fistula and currently have have two setons in place. The surgeon thinks I may have perianal crohns and referred me to a gastronotolist to commence remicide. I am in daily pain but it is manageable. I have been of work for a yr and need to get back for my sanity and finacially. However I sit alot in wrk and was wondering if there is any advice about seat, cushions etc.

    Thanku

    • Hi Sandcastle, Good to hear you’ve changed surgeons to one you think you can trust more, it’s a good idea to ‘shop around’, some are much better than others. For sitting at work… I got a thick piece of foam (seat size), and cut a square hole in the middle of it. I had that permanently on my desk chair at work. I found foam worked better as it was softer. Also make sure you get up every 10 minutes or so, and do a lap of the office or just stand up and stretch, you don’t want to be sitting too long. Hope that helps :)

      • Thanks forr ur help. I will try different foam to find something comfortable. When im in the office I will try the moving frequently. Sometimes though I have to sit for longer but will use my good side lol. Thanks. I was thinking of a kneeling stool at my desk I wonder has anyone tried this.

      • I tried one of those kneeling stools as well! :) It was ok, a lot of the ‘pressure’ is taken away because it’s on your knees, but you still end up sitting on your bum. So I guess you could use a kneeling stool with the foam as well! It’s all trial and error until you find what suits your body best, depending on where your setons are. It would be great to hear what you end up using, let everyone know so that they can perhaps do the same :)

  198. Hello folks, well I’ve been following this site since May 2013, thank god it exists or I would not have been prepared for my recent anal fistula developments. So here is my version of events.

    I’m a 34 yr old female in Glasgow, Scotland, no health issues, physically demanding job and no private health care so using NHS.

    Beginning of Jan 2013 sharp stabbing pain in left buttock which continued for a week and pain increased into a burning throbbing pain. Attended GP and told it was an abscess giving 2 lots of anti biotics and pain killers.

    End of January 2013 the pain so severe, unable to sit, walk and even lie on my back or side that I contacted NHS 24 requesting more pain relief this was done due to it being a Sunday. Offered an appointment immediately and attended. 4 hours later I was in surgery for incision and drainage for perianal abscess. Released a day later with pain killers, lactalous and little info re what had happened or what to expect, had to stay with parents, limited in movement and wound had to be cleaned and packed everyday by nurses. So after 8 weeks I returned to work but had a brownish liquid still leaking from what I believed was my wound even tho nurses told me it was healed. Now I thought I was imagining it, but pus, blood and poop still daily stained the gauze tucked between my buttocks. Very little pain however after BM there was a burning sensation.

    April 2013 my follow up appointment with surgeon gets cancelled and rescheduled for 6 wks later.

    May 2013 attend surgeon appointment, explain about pus, blood, poop etc, without an examination he diagnose a fistula. Now I leave his office in tears as due to shock of the news the only thing I hear really is his explanation that I may require a temp colostomy. Hence when I google and find this site which filled me with fear but an understanding of fistulas and treatments at the same time.

    July 2013 my fistula EUA operation for possible fistuloctomy or seton stitch is cancelled. I’m was gutted as you are in limbo land, no one had heard of it or experienced it. Feeling alone even with family and friends around I slowly felt teary, lonely and helpless, gained weight and stop going out due to fear that I might smell even tho my hygiene is tip top. Nobody can warn you of this, the mental thinking is worse than the physical illness.

    10th Sept 2013 undergo day surgery with an unknown outcome……. I woke up to a high transphincter fistula with a seton drain in place. So I leave hosp with a groggy explanation re pain killers, anti biotics and more lactalous. At no time is anything explained to me or family for what happens next. On short journey home to my folks (again!) I soak the car seat with blood, this continued for an hour within the house, my dignity in tatters as my mum calms me and tries to establish where the blood is coming from and stop the flow, control is eventually gained and I sleep the rest of the night with my mum carrying out regular checks on me and the blood flow from the wound in my buttock. Following morning I awake to the same scenario, the district nurse attended and stated that this was the norm and supplied me with adult nappies.

    Each day blood staining has lessened, pain is a tolerable sharp stabbing pain in buttock and noticing brownish gooey stuff which hopefully means drain is working.

    Now after a BM the first couple of hrs the pain ups a little but I take a hot bath and it eases it, an itching has started not sure whats going on there, prob wet skin irritation but I just go to bathroom and baby wipe if I can’t get access to shower facilities, no idea how long I’ll be off work this time but I’ll keep updating of anything unusual and what stage is next.

    Thanks to all the strangers who took time out to write about this messy ailment I wish everyone well :)

    • Hiya

      Sorry to hear you’ve had a rough time. Sitz baths highly recommended!! I’m 33 year old female and live in England and have been suffering since May 2012. Like you it started as an abscess, seemed to drain and then continued to ‘drip’ – no one seemed to know what was going on and said it was nearly healed till eventually I saw specialist and then it all made sense. Have had 5 operations since…….long story!

      This site has been amazing for me too – no nurse, doctor or pharmacist had heard of sitz baths, they don’t seem to exist in UK so I bought one on line and it came over from the states! But a brilliant invention – really recommend you get one! I have one twice a day.

      Another recommend is Manuka honey – make sure it is the real deal (it should have UMF mark on it). It’s quite expensive but my symptoms have defo improved.

      And yes diet also seems to be important as others have suggested.

      Good luck – rest well a d get a sitz bath – cleaner and more convenient than having a full on one!! :-)

      • I had two operations. It’s been 5 weeks now since the second one. My advice: Sitz bath, twice a day with a drop of eucalyptus oil in there (not too much or you’ll really feel some pain). Use a stool softener, continuously, for like, three months. Watch your diet, stay away from too much bread. 50% of your diet should be vegetables or fruit, take a good multvitamin, and some kind of royal jelly. I found Royal jelly helps with healing.

  199. Dear 0buttcheek0, highly recommend you look at the diet stuff on this sight to help with pain mgnt particurlly that following BM…..I too was 31 year old female healthy with highly physical job prior to random fistural development (2 years later still known reason). I initial had a seton placed in feb 2012 with very poor out come….my surgeon did a flap/fistuectomy (still unclear which she did despite trying to ask multiple times) surgery in aug 2012 which failed and I had a seton placed in may 2013 again. 3 weeks prior to the second seton placement I started a gluten free dairy free diet after reading about stuff here….since my pain has almost completely subsided (maybe one or two days a month) and drainage steady but minimal. Normal sex life as been able to be resumed (my husband is great about the seton bugs me more mentally and he is the one that sees it. And I was cleared two weeks ago to start trying to get pregnant. My colon rectal surugon has said where I have stabilized the seton so well to just keep it in to after I do the family thing. No reason to get ride of it unless I have pain or complications again….

    I do notice now that is I have dairy or gluten my pain does increase.

    Good luck….stay positive….stay strong….

    Rachel

    • Hi Rachel

      Thank you for the prompt advice, I will get straight on the case in the morning of researching the diet info. I had a wee look at it weeks ago but was more concerned re surgical treatment but now the hosp done their part with the seton it’s time for me to do my part with the diet.

      It’s good to hear from someone my age and of similar lifestyle and fistula story now I realise it’s not only me that has this.

      I have my fingers crossed your seton behaves to allow you to start a family, exciting times!!!

      Kelly :)

  200. Hello all,
    Well my husband made it home from overseas finally…thank god! It was a difficult flight home, with an additional 5 hr wait on the plane due mechanical problems! But, he made it safely. When he finally arrived i drew a hot bath with epson salts and it really helped him. I had made an appointment at the cleveland clinic for him to be seen by one of their cr drs. He was seen yesterday, and the dr immediately cut the plastic setons out and my husband felt instant relief!! Yeeah! So now we are awaiting surgery this afternoon to lay open the fistula. The dr said he may have to replace the setons, but at least it wont be the cutting kind. So, wish us luck, and hopefully this will be the beginning of the end of this nightmare!
    Thanks all, and good luck to everyone out there suffering from this terrible condition.
    Jamie

  201. Jamie, so glad to hear your hubby home and getting prompt medical attention. It was distressing reading your initial comment as family and friends must feel helpless in those circumstances, us fistula suffers sometimes forget families lives also become rollercoasters while watching their loved one go through this. Well done, having everything arranged for him!!!! I wish your hubby a speedy recovery :D

  202. Hi.. My father is suffering from fistula, and he he undergoing the treatment of khasrsutra, its been almost one and a half month but the pain is still therein the rectum area and he gets fever in between. I jus saw the post mentioning that it is a very effective treatment. Can u tell me if the pain is there during thr treatment too or should we wait until the thread is removed!

  203. I have had a recuring abscess over the past few years’ this last time, a couple months ago I had it drained professionally. A month later I went in for my first fistulotomy. A week later developed another abscess in a different area amd a high fever. The next day they operated again. This time they placed a seton back there. Is this going to be an on going thing? The pain was horrible. Its been 3 weeks and im still in mild pai n and walking a lil fnny but im back at work. Also a few months ago I was diagnosed with diverticulitis. Being 30 its kinda rare to have that. Is this in anyway re

    • Adam,

      Your experience is what I am very unhappy about with the medical brotherhood today. I mean that you have just been put through surgery and through this they, the Doctors, did not attempt to try to find the underlying cause for your condition which caused the initial abcess.
      I too had an abcess, I have a seton inserted now. I went to two doctors. The first one wanted to perform lay open sugery after the abcess drain and the second one wanted to do the same without asking if I had any stomach or in my opinion any underlying conditions.
      I did have what I self diagnosed as IBS and was taking probiotics to relieve the condition which had some effect. I volunteered that information to the doctors and requested a gastroscopy and colonoscopy to check if there was anything more sinister such as colitis or gluten intolerance. They performed both procedures and also inserted a seton at the same time.
      What they found through the gastroscopy was a stomach bleed caused by a heliobacter pylori bacteria which induces stomach ulcers. I must say here that I had to make several reminders to the doctor to perform the gastroscopy with the colonoscopy to ensure he did not forget to do it !!!!
      My advise to you is to treat the condition you have, diverticultis, and leave the seton inserted until you may be able to obtain some control before any further fistula surgery.
      I am not a Doctor and I still respect the medical profession but in respect to Fistula treatment and after reading this forum for some weeks now it seems there is another galaxy of research required to get things right.

      I have received treatment for the Heliobacter and now feel a 100 percent better. My fistula too is now draining less and feels like it is healing.

      Too many experiences I have read here are very sad and I think are a consequence of poor attention with the patient and doctor.

  204. Hi, I’ve written before and your answers have helped me a lot…
    I got my fistul about two years ago, first they tried the mesh but that failed so I had the seton in for almost two years. Finally on July 2nd I had a fostulatomy, it’s been over two months and I’ve been pain free for a while now, my last visit with my surgeon she said it looked half way healed seemed to be going really well, I even felt good enough to go on a awesome treetop adventure obstacle course, completely no pain the whole time it was like I was back to normal!
    But… There’s always a but(…no pun intended…) but, today has been a pretty long day, I was on my feet since 9am till 6pm, and i feel a strange uncomfortable feeling. Almost like the area feels hard? I don’t know, it just feels wrong and it’s making me very nervous… Do any of you think I should b concerned? Should I call my surgeon? Since my last appt went so well she said I should come back in 6 weeks which means I won’t see her till the end of October, but if a strange hard feeling is concerning me then a month is way to long to wait to make sure nothing’s wrong…
    Has anyone had this feeling before?
    What should I be doing differently?!
    Please help!
    Thank you!

  205. I had a perianal abbesses and i had surgery last July and it got worse and spreaded into a fistula and they were packing it and they stopped packing it I had two surgeries on it an now it’ got a greenish brown stuff that smells bad coming from it and some times yellow puss and it always bleeds really bad and hurts when I sit down what could be the problem here anyone no

  206. Hey folks, a wee update.

    Well I’m on week two from having my seton stitch placed, after a manic first few days things have calmed!!

    4 days ago my sitz bath arrived – amazing, thanks for the tip :)

    Been following a healthy diet, feel better in myself for it.

    The stabbing/throbbing pain in my buttock that I was having has gone and I have most of my mobility back.

    Drainage of pus, blood etc was heavy for the first 10 days but now it’s mostly light brown fluid (gros i know – but this site is where I learned everything). I was using large nappy style pads but now I’ve moved to sanitary towels hoping in the next few days I’ll be back to my gauze which I did before the op.

    No denying it, it smells a lot!! again it’s all about keeping on top of the hygiene.

    I can still feel the stitch I feel it’s moved further up into the wound but I still can feel it and its not hurting so just left it there.

    My follow up appointment is 24 oct 2013 with a possibilty of getting the LIFT procedure so fingers crossed this stays the same as I can drive, returning to work albeit light duties (police custody officer) and 90% back to normal.

    Now I appreciate lots of you are having a difficult time, my thoughts are with you, i dont know whats ahead of me, but this part of my recovery been ok apart from first few days and thought it might give a reader some hope :)

    Take care x

    • Not completely sure what you mean about the stich….but if it’s anything like mine I have a knot In the seaton where it joins together my doctor did tell me to frequently check the seaton and it will be much more comfortable if you keep the knot on the out side of the body. She first told me to just let the seton move freely. But after I called her about wicked odd discomfort she asked where the knot was when I said I don’t know she informed me to keep it out side the body….

      Glad things sound like they are getting better….good luck

      • Me too Rachel, the knot in my seton used to go up into my body all the time, was so painful, scratching around in there! I used to go and see my nurse and get her to pull it back around for me. After a few times, she showed me how to do it myself… easier to do once the pain goes down…

    • Yey! Glad you managed to get a sitz bath and things have calmed down. Keep up the good work – I’ve learnt from this site and from experience that fistulas get better with plenty of tlc….(sitz baths, good diet, rest, elevation….!!) Whereas doctors tend to say ‘just carry on normally’ a bit too early….!

      Good luck :-)

  207. Hey there, well I’m still confused as to what I actually have seton wise, the consultant at the hospital describes it as a seton drain and my GP who was reading from my hospital notes was adamant that I didn’t have a seton drain I had a seton stitch/suture. This is apparently tied in a knot high up in my anal canal at the internal opening and travels thro the fistula and tied in another knot at the exit wound. It doesn’t go round in a loop. This does make sense to me as I can’t feel anything from the exit wound into my Butt. My mum who was with me at first said she only ever saw the knot at the wound and nothing coming out my backside????? So I don’t have a clue whats going on, I just pray that it’s working!!!! I will speak with the district nurses in the morning and see if they can check the knot, thanks folks x

  208. Hey. This site is great isn’t it. Somewhere where we can talk freely about pus, poop and bums! I think it’s one of the hardest things about the condition. I’m quite an open person but draw the line at telling people about discharge etc as lets face it, is gross. The only downside is its hard to keep up with everyone’s comments!
    Well I had a seton put in 3 weeks ago but was in a lot of pain last week. I’m waiting on a bed to go in for another examination under anaesthetic and MRI scan but as it’s NHS I could be waiting all week. I just want to get this sorted so I can resume normal life again. It feels like I’m in a state of limbo at the moment.
    I’m 29 and really worry how all this will affect my chances of having kids etc. I don’t even have a boyfriend and the thought of anyone going near me ‘down there’ fills me with dread! Is anyone else in a similar position?!

    • Hi Katherine,

      I am 31 female with a anal vaginal fistural.

      First have you tried to move your seton around….I had horrible pain following my first seton placement and some of it was due to the knot end being inside of me…

      Second I have been told it is ok to get pregnant with a seton in place. I currently have one in now and both my obgyn and cr surgeon have given the green light for my husband and I to start to try. My cr (colonrectum surgon) wanted to make sure my pain was well control prior to trying so took a little time and diet changes but I got the green light. After my flap repair (which has since failed) the doctor had said pregnancy would also be fine but we could not get my pain controlled and when they went back in a second time the fistural had not healed and so the seton was replaced. My surgon and obgyn have just worked together on another pt who had a seton on and carried full term. The one down side is both doctors do insist on c-section.

      As for the act of getting pregnant. This will sound corny but the one who truly loves you the seton and any other scaring will not matter. Following my flap repair my husband did all wound care and monitoring for discharge (FYI he is accountant nothing medical). And once I was cleared of sexual activitiy again he had no problem. I struggled for a while as it was discomfort as we figured out which positions were best and caused less pain and pressure. And I felt scared but my husband kept reminding me it’s me who he loves and the issues down ther are just part of me…. For me it’s been two years now since my first surgury that we learned about the fistural so we are to the point to joke a bit, but my husband does joke it looks like a new age peircing. From experience though just relax it will be ok….

      Good luck
      Rachel

      • Hi Rachel
        I had flap repair 3 months ago and everything seemed to be going well. But the last two weeks I’ve had an ache around the site and today I have discharge for the first time since it healed. When you say that your flap failed, was it immediately obvious that it failed? I think I’ll book an appt with my surgeon but I’m not sure that I’ll know it’s failed. Was discharge a sign for you that it failed?
        Jane

      • Hi Jane, maybe you’ve got a small infection? Always best to go and see your surgeon ASAP just to double check everything is ok.

      • I would not jump to the worest go see the doc. For me I had a small area that would not completely close up. And a lot of pain. And no it was not immediately. I had good and bad follow ups. Flap was done in aug and it was not to April that my surgon decided time to go in and explore. She had told me it could rake 6 months yo fully heal

      • My advancement flap took 6 months to heal, and 12 months to stop hurting, the nerve damage takes a long time to repair.

      • Oh thank you for that, I didn’t realise the pain ma go on for so long. I’ve made an appt to see my surgeon just to be sure it’s all going ok. The discharge starting again is concerning me a bit when it had stopped
        Jane

      • Hi
        Thanks for your reply. I’ve made an appt to see my surgeon on fri. It feel like its healed over so I’m just not sure where the discharge is coming from. Fingers crossed
        Jane

      • Thanks for your reply. It is reassuring that there are other people who are going through similar experiences. Sometimes it can feel so isolating.

        My knot is on the outside but it does dig in sometimes. I used to be able to pull my other one but this one is painful to pull. My MRI is scheduled for tomoro as an outpatient so least that will be one thing out of the way.
        I invested in a sitz bath yesterday. I’ve never heard of them before but it seems like it would be a much easier option than running a full bath of salt water each time!
        As for relationships, it’s just so difficult in the beginning. How do you go about telling a new partner you have a discharging hole in your ass with a red stitch thing hanging out of it?! Lol 💩

    • Hi Katherine, don’t worry about having kids, that’s all fine :) I had a baby 7 months ago, had to have a c section, but I’d rather do it that way anyway! And that’s AFTER my fistula has healed through an Advancement Flap… my surgeon said it was still best I had a c section, so as not to put any pressure on my body. And even if you have a seton in, you can still get pregnant and have a baby.
      As for meeting a bloke… Well, I was in exactly the same position. I was 32 and single when I had my setons in. And I thought I’d never meet anyone. But I did, and he didn’t care about the setons. I waited a while before I said anything about it all. But he was fine about it. We’re not together now, but that’s a different story! Haha :) My point is, you will still live your life, and meet people every day. And if you meet someone that thinks you’re awesome, they won’t care about your fistula problem. And if they do – then they’re not worth it anyway :)

      • Ah thanks for that. It’s always good to hear reassuring words from someone going through the same thing!

        What’s advancement flap surgery? I’ve never heard that mentioned by my surgeon before. 💐

      • Have a look on the surgery page of this website, it explains what it is there. They stitch a flap of tissue over the opening of the fistula tract. Sometimes the flap ‘sticks’, sometimes it doesn’t. If it does, it’s a very effective way of healing/closing up a fistula. But you can’t have advancement flap surgery until you’ve had setons in for a while. The tissue needs to be healthy/infection free/not inflamed etc before they can stitch the flap over. Your surgeon should be telling you about all the different procedures in detail. Give him/her a rark up!! :) Ask loads of questions, they need to earn their money and keep you fully informed :)

  209. i am suffering from fistula in ano(posteriorly) for 6 months goin for fistulotomy operation along with sphincterotomy as i i hav chronic posterior anal fissure too..plz tell me about post opertative recovery and complications by ur experiences..

  210. Hi Guys
    I am booked in for more biopsies in 2 weeks and surgeon is going to try and plug fitted and yet more biopsies done. This will be my 14th op!!
    I am so fed up with oozing pus out of my butt 24 hours a day. I spend a fortune on dressings. In have had 2 lots of setons but I dont think they helped, the rubber one was unbareable so they are looking to insert a plug the last ones out in March. However it never healed and leaks all the time. I found the silk one better but my surgeon is off sick so new one siaelp me to hd would have to be a plug. I just dont see how keep taking biospies from scar tissue can heal. This condition really is a pain in the arse. The medical profession seem at a loss as to how to cure sufferers. I am going to ask if I can be referred to another specialist. I live in Somerset. Any UK readers reccommed a surgeon that can cure this condidtion??

    • Hi Debster, 14 operations.. you poor thing :( To be honest, I think you really need to do some research on Specialist Colorectal Surgeons in your area, and go and get 2 more opinions from other surgeons. If I were you, I would do that BEFORE you have Plug surgery. Why does your surgeon keep taking biopsies? To check for crohns? Please go and get another 2 opinions before you have any more operations….

    • Hi debster, I am in North Somerset and under Caroline Burt north Bristol hospitals…although her waiting lists are soooo long, I have had a drainage seton in since May 1st 2013 and my next procedure is booked for 16th Oct… I have no idea what she intends to do to me, i feel at a loss when it comes to information from her. I have puss still oozing at times and so itchy etc… Im so annyed at being just “left” to deal with this myself. I had to chase chase chase my next procedure, I was told it would be 6 weeks from my last op (1st may) and here I am 6 months later!!! Which specialist are u under?

      • Hi smcookie good new if your surgon has a long wait means she is probably one of the better ones. So that is good. Also as annoying as it is to have the draining seton in I have been told the longer it is in the more the area can try to calm down and the better the success rate is for the next surgury to try to heal it. Also it is allowing time for the infection that caused the fistural to fully drain out. Belive me I know it sucks my first seton was I. From feb 2012 to aug 2012 and not a day went by I was not in pain and uncomfortable. Had a “healing” surgury done agu 2012 and in may 2013 had the seton put back in cause the flap surgury failed and it was got healing. Plan now is to leave the draining seton in for 2-3 years….since I improved diet, no gluten, dairy soy and limited corn I have felt much Better and not mostly pain free….hang in there.

    • Hi – I live in Dorset and have had a brilliant surgeon in Dorchester. When I was finally referred to him last year (after 6 months of doctors misdiagnosing me) I was put on an 8 week waiting list. After about 3 weeks I came home from work in tears and decided just to see him at the private hospital and had an appt within a week – it was the best £200 I’ve ever spent. I’ve had 5 surgeries since but all have been on NHS so you can see him privately for consultation but still have surgery on NHS. It’s been good to have the option to see him privately – follow up appointments £120. Yes, it’s a lot of money and at first I felt bad but it’s been a life saver and if you can I totally recommend him. He’s been v understanding, explained all options and he is v approachable. His name is Mr Lewis and he’s based at Dorchester County Hospital – or The Winterborne is the private one. Good luck – let me know if you have any other questions. :-)

      Ps I won’t bore you with each of the 5 procedures – it’s a looong story! But the good news is I think (cautiously hope!) I am now out of the woods! He did the LIFT procedure that worked :-) if you’d like to know more feel free to ask!!

      Pps do you have a sitz bath?

      • Hi, thanks so much for writing up this information for other people that live near you, that’s awesome! And if you have time, please write something on the “Success – Fistula Free” Page about your LIFT procedure that seems to have worked. There’s so much doom and gloom on here, I would love to have more happy ending stories for people to read on that page. Thanks again! :)

  211. Thanks to everyone who has posted about their experiences. I have been keeping up to date with the posts but this is my first time posting.

    Had my first abscess in 2006 and a draining seton put in place in July 2010 after some investigative surgery when I was told that they had found the fistula but they couldn’t operate as it was going through my sphincter. Didn’t help that I am a diabetic as this caused healing time from abscess drainage operations to be increased. Would take around 3 months for the wound to close. Has been a bit depressing at times and always conscious about the seton and trying to keep the pad between my bum cheeks.

    Earlier this year when I saw my Consultant at Glasgow Southern General Hospital he talked about one of the other Consultants who was now performing LIFT procedures and he thought I would be a good candidate for this.

    Had a LIFT procedure on 27th September so now 8 days post surgery. Was done under a general anesthetic. Felt ok after the operation but must have been full of painkillers as after a couple of days it got really painful. Has been a pretty painful week, easing a little today. Bowel movements have been fine since the surgery but took about 36 hours post surgery to have one. There is a small amount of leakage so still wearing a pad. Won’t know the outcome for another few weeks when I see the consultant.

    I’m praying that this surgery has worked. Has been hard to live with at times. Skin would get sore and my self confidence has went down. I have a desk job so sitting for long periods when sore is hard. Could always tell when I had an infection building when the seton was in. I would get constipated, as if my sphincter didn’t want to work, for a few days. Then would come the puss and sometimes blood out of the fistula opening and my bowel movements would go back to normal.

    Hopefully this will be a good ending and will post an update in few weeks.

    • Hey Andy

      Good to hear you are now approaching the final stage of this mess. Fingers crossed all heals well for you.

      I’m near hamilton and on 11 sept had my first seton placed in, had probs as previously stated on here but I’m now pain free and back to work light duties :).

      My appointment at wishaw general on 24 oct has been cancelled to 6 dec so I’m gutted I have this seton in that time but I knew from this site it takes time.

      The consultants plan for me at some point is LIFT procedure so I’ll be keen to follow your progress and how your doing so keep us up to date!!!!! As this site is my guidance notes :D

      I wish you well
      Kel

      • Hi Kel

        Certainly having the seton in was a lot better than getting an abscess and didn’t have a day off sick once I had returned to work until the LIFT. I had the seton in for 3 years as I decided that I didn’t want to have a plug as my sick record was bad with work from the previous operations and the consultant wasn’t positive that it would be successful. The only problems I would have with the seton was the skin would get irritated if too much moisture and and was always wary of having to wear a pad.

        Went back to work on Monday, just over 2 weeks after surgery. Most of the pain is gone from the LIFT procedure. Just get a short sharp shooting pain now and again and generally feeling pretty well. Still get a bit of leakage but from what I have read this is normal while the fistula heals itself and the opening where the seton went through is closing.

        Still not had a follow up appointment. Called the other day and was told that the surgeon will not want to see me for another few weeks.

        At the momemt it feels like progress but just taking it one day at a time.

        Hopefully when you see your Consultant in Wishaw they will have options and a solution. Will try and post another update before 6 December.

        All the best

        Andy

  212. IN 2007 I WAS DIAGNOSED WITH ANAL FISTULA 2MM PIN POINT NEAR ANUS AND WAS DISCHARGING PUS AND BLOOD..I BEARED IT FOR 2-3 MONTHS BUT MANAGED TO GET SOFT TOOLS BY ADDING FIBRE TO MY DIET.. THIS EASED THE FISTULA WHICH IS NOW DRY , NON ACTIVE , NO PUS , NO BLOOD. ( PUS MAYB ONCE A YEAR)
    MY ONLY CONCERN IS SHOULD I GET IT OPERATED NOW? CAN IT HARM INTERNALLY WITHOUT ANY ALARMING SIGNS ?
    KINDLY REPLY ..

    • If you are not in any pain, and you have no discharge at all, then I would advise to leave it alone and not get surgery. Continue eating healthy and exercise and hope your body will completely heal it on it’s own eventually. It’s not worth it in my opinion to chance activating it up again with surgery and possibly making the situation worse. I don’t think it’s doing any harm in there if it’s non-active. You’re lucky!

  213. Good morning,
    As per my previous comments I still have my fistulars and 2 seatons in place. I have recently been in a bit of pain much more than normal. After back and forth visits to my consultant they have confirmed that I have Crohn’s disease and I have been proscribed Budesonide which worked almost instantly with the running to the loo or having to be near a loo! Before I started this treatment I could have upto 10 poos a day, where now it’s just the 1 and no tummy cramps and I now don’t even have the panic poos! And the pain has reduced so much. I was at my consultant again yesterday and I have been given Azathioprine which I have only just started and in 2 weeks time I start inflixmab, she had advised that she is going to treat it hard and then reduce the dosage, I would suggest that if anybody out there who has fistulars and abscesses and you have not been checked for Crohn’s to ask your consultant as I understand that the main reason for fistulars is due yo having Crohn’s / colitis – it’s worth asking because before I started the first medication budesonide I could hardly walk some days with the pain! Now I am on the beach daily with my little fury 4 legged friend! He thinks its Christmas everyday just like me! Please don’t sit around in pain as you may well have perianal Crohn’s without even knowing. Hope this information has helped

    • I also have a fistula and two setons. Was advised by previous surgeon that I did not have crohns. However my new surgeon did tests specifically for perianal crohns, as tests amd symptoms appear different to other forms of crohns. After a yr I have been told I do have this form of crohns. So now waiting to get remicide. Fingers crossed it helps. As have had 9 surgeries in a yr and I want life back.

      • Gosh, pretty terrible that it’s taken them 9 surgeries to decide that you have crohns! I would make sure they know that you’re really unhappy about that. I had lots of surgeries too, and every time I had surgery they took a biopsy from a different area of tissue. Because yes, there are different forms, and you can have it in one place and not in the other. So it’s hard to diagnose… but after 9 surgeries, that’s shocking. Sorry to hear you’ve had to go through all that. And I hope your body reacts well to the Remicide. I’m sure you already know, but going on a specific diet will really help you too. It’s hard to stick to but will really help.

      • Thanks for your support. First 7 surgeries were with 1st surgeon who appeared out of his depth. New surgeon really experienced and appears to know what he is doing thank goodness. Finally getting back to wrk after 1 1/2 yrs off. Will b hard but I am sure I will adapt as I have done at home.

  214. How I know if there is any infection after anal fistula surgery? I hade a surgery 2 weeks ago and I notes that the area is draining with dark withe color. I like to know if it is normal or may infection, thank you!

    • Hi Adali, if you have an infection, you would most likely have a high temperature and pus draining from the area, you’d be feeling unwell. What surgery did you have? Did you have a seton put in place?? In which case it’s normal to be draining for some time. If you’ve had an advancement flap and it’s draining, then you’d need to get checked by your surgeon. So really depends on what type of surgery you had.

      • I agree u know when there is an infection as u do feel unwell. I feel nausea, extremely tired and pain increases in the area. Antiboditics and sitz baths are best. But would try anti inflammatorys first amd sitz bath first.

  215. Hello, last February I underwent surgery for drainage of an abcess. I had a seton placed until today. Today I underwent an examination under anaesthetic to see what could be done to repair the fistula that had developed after the abscess. They ended up doing what I would describe as a partial fistulotomy. They laid open half the fistula and placed a draining seton in the other half. The open half has to be packed for two or three weeks and they told me once that’s closed they will take the seton out of the shortened fistula and that it should close on its own. Pain wise I was expecting worse. Anaesthetic started to wear off and I felt a bit of pain but I took two neurofen and the pain is gone now. The most inconvienant thing about it is getting the wound packed, but it’s not so scary second time round as I feel I understand the situation a lot more. I don’t have crohns, or any bowel disorder, I was just unlucky apparently. The abscess was the most painful thing I’ve ever experienced and I hope I dnt have to go through it ever again.

    • Hi Emma, I am interested to know why they did not lay open the entire fistula. Was the sphincter muscle a problem if they did the entire tract? I have a seton fitted and am due for some surgery in the near future.

      • Hello Illikai, yes they didn’t lay open the entire fistula because some of it is going through the sphincter muscle. I went in to day to get my wound packed, and they said that once the open wound is healed they will take out the seton and they might use fibrin glue to help close off the remaining tract. I was reading that the long term success rate for fibrin glue is pretty poor, but they think it has a good chance of working in my case because I don’t have crohns and the fistula tract has been significantly shortened. The whole thing is an awful experience really but I feel like im finally getting somewhere with the healing process. Last February it felt like the whole world was coming down around me. I got really sick because the infection from the abscess had spread to my blood, so I had to be admitted to hospital to drain the abscess and be put on IV antibiotics. Its great that your having surgery soon to correct the problem, its another step in the right direction. Did they tell you what procedure they are going to do?

      • Emma, thanks for the reply. Surgery procedure is subject to the ultrasound I had done recently to check how much muscle is covering the fistula. Appointment with surgeon next week to find out result. I suspect that a lay open will be done like what you have had. Your experience up till surgery is very much like mine except infection with abcess did not enter the blood.

        You seem to coping well, seton and packing to me seems very inconvenient. Interested in how long you will take to heal as I am pretty busy and cant stay off work long. Healing is individually variable I suppose. Fibrin glue placement is something I wonder about too in that if it does not last long can they remove and reinstall or is full tract lay open surgery only option after glue? I will ask surgeon when I see him if he tells me he intends to inject glue also. I don’t have crohns but after a endoscopy they found I had a heliobacter stomach infection/ulcer which caused urgent diarrhoea a few times a month. I have taken treatment for this and I think it has been successful. endoscopy only done same time as seton placement after my insistence.

        Illikai

    • I asked the doctor how long it would take for the wound to heal and he told me it would be packed for 10 days. Going from past experience on listening to doctors I would definitely double that figure:) When I was getting the abscess packed that took 8 weeks, but it was a very very deep cavity. This by contrast is much smaller, so im guessing it should be almost there within 3 or 4 weeks, I think the nurse said the wound is about 2 cm deep. I can’t look myself, but I took the wick out of it the other day and the amount being used is miniscule to be fair. I hope you won’t be in too much pain, but from my experience pain was minimal. I had the operation done on monday and I was back in college for the full day on wednesday sitting down at a desk for the day. It only hurt me while sitting down on impact with the seat, but to stay sitting down it was really comfortable so I hope its the same for you. The only thing is getting the wick changed. Ive had to miss numerous classes this week because I have to go to the day hospital to let a nurse change the wick, If you have someone at home that could do it you probably won’t miss to much work.

  216. I’m so tired of dealing with this! I am a 25 year old female. I shouldn’t have to deal with this! I have been dealing with this since February of this year. I have had 3 surgeries since then. This first was a seton placement and then my second one was a LIFT procedure and that failed within 6 weeks. I went back in for my third surgery and had another seton put in. My surgeon was hopeful that I wouldn’t need a 4th surgery and she would just take the seton out and let it heal because the location of the internal opening was right on edge of not being internal anymore. At my appointment on Friday she did an exam and found that that internal opening is larger that she would like and there is a lot of scar tissue so she now doesn’t think it will close up on its own….she isn’t comfortable with doing a cutting seton because the tract goes through a lot of muscle…so now I am scheduled for my 4th surgery and I know that is nothing compared to some people but still its not the most convenient thing in the world. My 4th surgery is going to be the advancement flap. Surgery is not until December 12th. November 4th I am going in for a second opinion with the Chief of Colorectal surgery at a teaching hospital in Wisconsin. So maybe he will have some more information or another option.

    But my question for everyone is what are the things I need to do to increase my chances of the advancement flap being successful? My procedure is same day surgery but have read that some people stay a few nights in the hospital, how long should I be on bed rest do I need to be on full bed rest? I really need this to be my last surgery….any advice would be appreciated!
    Alyssa

    • Hi Alyssa
      Yes it’s very frustrating isn’t it. I had advancement flap surgery in July and currently it’s all looking good, although I’m having an ultrasound soon to confirm this. My surgeon said there was nothing I could do to increase success, but I followed some advice from this site. The main one is rest. I was in hosp for 4 days as the surgeon had me on nil by mouth to allow the flap initial time to heal. Then I had 3 weeks at home. Dull but it’s gives you time to heal. I then went back to work but with hind sight another week would have been better. Eat easily digestible foods. I was on antibiotics for two weeks. After a month the wound was quite red so I went back to surgeon and had another round of ABs.
      I didn’t exactly do sitz bath but after each bowel motion I had a little soak in a sitz bath just for a min or two to clean the area. My surgeon didn’t recommend sitz baths but see what yours says.

      My main advice is stay vigilant and if something doesn’t feel right call your surgeon. I also stayed away from dairy but not sure if that had any effect. I also took zinc and vitamin c as these are great for healing.
      So the main thing is rest and no exercise.
      I really wish you well four ops is a lot and you have had a rough yr. prepare fir surgery by eating well and exercising.
      All the best
      Jane

      • My surgeon said its same day. Am I able to request my surgeon to keep me overnight a few days?

      • So when you say your doctor kept you in the hospital and gave you nothing by mouth were you able to drink anything or do you mean literally nothing and you just had IV? Were you on bed rest or were you able to get up and use the bathroom?

      • It was no food for 2 days then light fluids and then light diet. Then home. But I was up and walking/ showering the next day.

  217. Hello Pals,

    I would like to share that I have been consuming the following foods since 3-4 days and it seems that going to washroom is not a nightmare.

    Dinner and Lunch:
    Wheat Bran
    Flax Seed
    Yello Split Peas

    Apart from these, whenever I am hungry, fruits and juices. It seems its working. Do try and let me know if it works for you as well.

  218. Hi Every1,

    My name is Max, i have had 18 hospitaladmition and 14 seton drainage operation in melbourne and sydney in public and privat system, all crap it was just an absses but 2 and half years ago they turned it into high compex anal fistula which failed pig plug and waitint to do the fibre glue, but it has to dry off infection before doing the glue, now the actual track has 2 or 3 branches upword, meaning it will never dry cause they have not addressed it, sick of australian unpro surgeons whom think it will fix it self.
    if anyone dealt with high complex fistulas with 3 side traks plz let me know i am willing to travel anywhere i just have to rub the sergeon my monies back i spent back and forward in privat hospitals and bills they send me afterwards 3900 plus without giving me estimate or choise, basicly thivery,
    this is after putting me on morphine for 2 years, obviesly if they canot fix it they make an addict out of you. can not even detox cause undergoing operations so offen.
    hope no one goes throu what i am going throu
    i feel like naming the sergeons but i have to wait to find one before i do that i bet they go to hell.

    • Hey Max,

      I am also in sydney. Have seton installed but no surgery yet. Interested in what you mean by ‘they turned it into a high complex fistula’? I am very afraid of what surgery is available to rid the fistula condition as alI I am reading on this site is that what ever is done it is very unsuccessful !!!!
      Max, you have had 14 setons installed? What happened to them? did they come loose?
      God, I am not looking forward to any surgery,. while the seton is very inconvenient I have no pain and would after reading your case leave it in for as long as possible >

      Illikai

      • smone help me out , i have fistula frm last 6 years nd it has opening in the way of human waste …. Cn someone tell me is there any chnce tht fistula become a cancer

      • Mohit, You need to see a Doctor if you havent already. Your condition re human waste. do you mean a discharge or faeces? Fistulas when open do discharge. Cancer question is for the specialists but fistulas if not free to discharge may branch out and turn into a very serious infection (sepsis).

      • Hi Illikai,

        every 2 to 3 month the track got reinfected and they had to readjust or redo the whole Seton business, also some surgeons had enough and could not fix such high complex fistula, so knock me back and I had to go different hospitals and they did the same thing so each case is differs from other. try Germans apparently they are fixing it with temporary bag to allow the fistula to heal.

        good luck

  219. Hi All,

    Good day to all of you guys! I’m from Philippines and I just want to share my experience about this awful disease. First, I noticed that there was a small pimple near in my anus last August 2013. I didn’t care much about this because I thought that it was a simple pimple, after two weeks it began to cause me pain and I immediately seek an internal medicine assistance. The doctor gave me an antibiotic and advice me to return after two weeks if my problem still occurs. The pain relieves me during my medication but after I consumed all, the pain returns. So I return to my doctor, he introduced me to his colleague which is a Surgeon. The Surgeon immediately recommended a surgery which he found that my small pimple creates a track called Fistula. I went to a surgery on September 26, 2013 (Fistula-in-ano). The first 3 to 4 days after my surgery was very painful. The cleaning progress, bowel movement and all my regular activities was affected. I’m lucky that my wife is nurse and knows how to take care of my disease. She patiently clean my wound (even there is a poop and puss, YUCK!) and I think this is one of the key for immediate healing of my wound. Another thing is, after my operation, I took sitz bath twice a day using boiled guava leaves which is known as the best cleansing agent for all wounds. As of now, my wound is I think, less than 1cm deep and we could no longer put a gauze inside the wound. I’m still in the healing process and praying that this disease would leave me soon and would not re-occur. I hope everyone out there would still conquer this awful, painful and traumatic illness. Just remember, sitz bath with boiled guava leaves, proper care after surgery and mostly PRAYERS!

    God bless to all you!

    Regards,

    Vinusa

  220. Forgive me for my bad grammar I’ve got terrible dysgraphia/dyslexia. I had surgery on a fistula around six weeks ago. My wound is no longer “draining” but occasionally it will bleed a tiny bit and it hurts not like it did before surgery ( a deep throbbing pain) but now its like a sharp burning pain and it’s not longer constant. With occasional throbbing. what should I do? My doctor doesn’t care (another story for another time) and I don’t want to go back to the Er again.

  221. My husband has a Anal Fistula, and he is very scared of surgery, do you think instead of surgery Ayurvedic treatment will help him in curing it without reoccuring. and also we were planning to have a baby is it safe for me and my baby if i plan to have a baby from him at this point of time, Kindy reply.

    • Best to talk to a doctor nandini, but I am a female with a active fistural, I have a seton in place, and my doctors have cleared me to get pregnant. They said there is nothing health wise that will prevent me from getting pregnant or any risk to the baby, only issue is I will need a c-section. But that is not a issue for your husband as he won’t be hAving the baby :)….good luck.

  222. Lovely to see a site dealing with fistula problems and a general support system for all us suffering from this nasty problem

  223. Has anyone had a cutting seton? I go in once a week for the fun filled experience of having it tightened. I was toold it would comwe ou2out on its own in a month. Its been 6 weeks now and its still holding on. Is this normal. And the pain from it is pretty uncomfortable.

    • Hi Adam. I’ve had a draining seton before and a rectal advancement flap procedure which failed. So, on Thursday the surgeon wants to put in a cutting seton. I’m very nervous about it because I have zero tolerance for pain and not looking forward to the tightening in the office. They say the same thing to me that it should come out on it’s on in 4-6 weeks. So, I definitely can understand and am about to go through the same thing as you. I would like to stay in touch and share updates to see how we both progress and what works and doesn’t work. The doctor says I’m supposed to be able to come back to work after a week but not sure how that is going to go. We shall see. Hang in there buddy and message me anytime.

      Tony

      • Hi there. I had a cutting seton inserted 2 weeks ago, I was told that it was the most painful part of this whole process but honestly, I just had 2 paracetamol the day after surgery and nothing else, and believe me I have NO tolerance when it comes to pain. I’m booked in every 4 weeks until its over but I don’t know what comes after this step. Any ideas anyone?

  224. Hi everyone. I’d left a comment on here a few weeks back bc I had been told I had an anal abscess & fistula and had it surgically drained & a draining seton placed. I appreciate this site and the support, at the time I was in a lot of pain & depressed. The seton is much more tolerable now and I’m waiting for it to drain and then will have the LIFT procedure.

    Anyways, I’m wondering if anyone is familiar w Hidradenitis suppurativa. In the past I’ve had painful bumps in the crease of my leg. I was told by my GYN these were in grown hairs, but I knew it was more than that. They would start as small bump, get larger and swell up and become very painful, the rubbing of my underwear clearly didn’t help. At times they’d form a head and then spill out pus & blood, leaving a small scar. Pretty much like an abscess. Then they’d go away and I get them again every so often.

    I recently got 2 very gross & painful ones. The colorectal surgeon who placed my seton was out so I made an appt w a different general surgeon in the office. He told me I have Hidradenitis suppurativa, and that’s what’s causing these painful abscesses in the crease of my leg. So I’ve been doing a lot of research on this disease. It looks like there is no cure, some treatment to eleviate pain & swelling etc, and surgery. It has stages of severity and mentions that these abscesses can form pathways of bacteria under the skin.

    So my question is, can this disease, Hidradenitis suppurativa be responsible for my anal abscess and fistula? Are they directly related, does it have the same effect? And I usually get this “disease” in the crease of my leg, can it now be targeting the anus? Or is an anal abscess with fistula different?

    Thank you to anyone who may know what I’m talking about.

  225. HI, THIS IS RANJEET JAIN. I WAS SUFFERING FOR 6’O’ CLOCK FISTULA, AND SURGERY HAS BEEN DONE ON APRIL 11, 2013. THE PORTION HEALED TWICE AND OPENED AGAIN. NOW, THE PAIN IS NOT THERE, BUT THE SURGERY PART IS OPEN AND STICKY DISCHARGES IS OOZES.PLEASE HELP.

  226. hi i had n rectum repair on 14th october still got pain on right side the pain plz help is this normal

  227. I hve fistula problem from past 4months nd yet to recover..went for an surgery nd felt more pain..consulted 4-5 doc still yet to recover..everyday going for an dressing still finding pain everyday. Plz help me my pain is increasing more nd more…

  228. I’m so happy to find help understanding fistulas as I’d never heard if them before my diagnosis . I had surgery 8 whs ago which involved laying open my fistula , it was dressed adult for 3 wks by district nurses who were marvelous . It’s been the most haunting 6 months since I first got the abscess words cannot express how this thing takes over your life . I now go weekly to a treatment room to have my wound checked as it’s now small enough for me to just apply gauze in between my bum cheeks to catch any discharge , it’s been ok until thus wk when u felt done slight discomfort around my bum and passed some blood and pus . The nurse said I may have just strained myself going the loo . I hope so as my first fear was it’s coming back. It’s now 2 days since I had this pain and im feeling possitive again , just hoping and praying for a day when this is fully healed and I can get my life back on track. My thoughts go out to everyone who has been suffering with this awful thing. Let’s hope we all see that light at the end of the tunnel real soon

  229. Hello Everyone

    I had fistula surgery a little over a week ago and I am not sure if its my paranoia or if there is something wrong. I was prescribed 3 different types of medications for my post surgery: 2 types of stool softeners, and 1 painkiller (Oxycontin). For the most part I have been in bed the whole time, no work, and every time I use the bathroom I shower so I am keeping VERY CLEAN. I noticed that I do have pads I put into my underwear to catch drainage….The problem is that I expected see SOME blood and SOME fecal-matter but I did not expect a smell and the amount of leakage. The smell is not that of stool but kind of a sour smell, I am not sure if that is normal? I do not think it is infected because I have no fever, no nausea, no itch, etc. The fistula is on the left side of my anus and now I have a bump on top of the anus..I am not sure if this is from the surgery and is temporary and I am getting scared for nothing or once again if there is a problem…..Thoughts?

    Thank you =/
    -DeMetrius

    • Following surgery a smelly discharge is normal and in large amounts, this will settle and lessen within 2 weeks you should notice a difference. Just keep an eye on the lump as your wound and surrounding area will go through a lot of changes. Sounds like u r doing everything right. Good luck

  230. HELP!!!

    ***I really need to find a colorectal surgeon experienced with doing LIFT procedures somewhere around San Francisco/Bay Area.

    Please post or send me a PM if you know of any CRS surgeons experienced with the LIFT procedure in San Francisco / Bay Area.

    I am facing the need for a LIFT surgery for an anal fistula and am willing to travel if necessary to get this all behind me.

    I don’t think my case is supposed to be complicated. So far, I have had a fistulotomy with seton placed about 4 weeks ago. My scar was maybe 4 inches long, but only about a 1/2 inch deep. It healed up well, but then in the middle a pin-hole developed and it is passing anal canal drainage and gas. This was really a downer that I couldn’t even get the wound to heal properly…makes me worry about the coming success of the LIFT procedure.

    So, I am thinking the best thing to do is to re-open the wound tract and let it heal again. (These things do heal, don’t they? Or am I just going to repeat the same problem?)
    And then in a second procedure (if the wound heals over correctly) do the LIFT procedure.

    My current surgeon – who I think is a good colorectal surgeon – has done fewer than a handful of LIFT surgeries with mixed success. He is suggesting going in to do both procedures together. But, that just doesn’t sound wise from what I’ve read about trying to maximize the success rate of the LIFT procedure by minimizing activity, etc. All the activity of packing and cleaning the open wound would surely unnecessarily complicate the LIFT procedure healing. Plus, the first time I had the wound cut, there was a ridiculous amount of bleeding (soaked through towels) – so, in case of a repeat of that, I would hate to risk a chance at a successful LIFT surgery.

    Thank you for maintaining this site. It is such an invaluable resource to those of us going through this ordeal…

    • My suggestion is to go to another surgeon who has a lot of experience. Sometimes these things never heal. My son has has one for years and nine surgeries. Go to someone who has done a LOT of these surgeries.

      • Julie – Thanks for the advice, I hope your son is handing things well! I think you’re right. But, I have no idea how I’m supposed to find a surgeon with more experience. Do I just have to start scheduling consults all over town to ask each doctor how many LIFT procedures they’ve done and how long-term the procedures have been successful? How do I find an experienced surgeon?!?!

      • My gp sourced a different surgeon with as lot of experience and I am so glad he did as new one far superior.

      • Sounds much better! Let us know how you are doing, :)

      • I know this might sound crazy, but this is what we do. I look up the doctors online and see how old they are. If they are young, then I figure they do not have much experience. I usually try and find one about in his 50’s so he is old enough for experience and yet young enough not to be too old. Also, I check online to see how many malpractice suits they have lost. And finally, I ask local nurses and any other person I have met in the medical field about who they would use.. I put it this way, if you needed a surgeon, who would you use and why? Hope all this helps.

      • Julie & sandcastle – Thanks for the replies! Julie, your process sounds good to do as much due diligence as possible given the limited access to information. I am now also looking at the real possibility that another surgeon may be out of my insurance network, so treatment could be COSTLY…but trying to get better is important! Each step forward is another pothole!
        Thank you both for taking the time to respond!

      • I agree. Working your way through the medical system can cause a person to get sick.

  231. Hi all!
    This is a very informative site. Here is so info about me:
    In 2006-2008 I knew something was going on down there but a gyno and dermatologist were clueless.
    In February 09 got sick got a huge abscess that was drained. A week later had a seton placed for about 3 months. It healed after was taken out. Then came back and developed on another side. Because of all the pain I decided to just live with it until end of 2012 when I went to c another doctor.
    10/2012 had a seton placed for about a month to prep for plug
    11/2012 plug and flap done (failed)
    2/2013 had the LIFT which healed half of the fistula and made it no longer pass thru 2 muscles.
    11/2013 (two weeks ago) had a fistulotomy but seems like a fistulectomy because I don’t have a gaping hole. The surgeon excised the tunnel from inside which I found out 2 days after surgery when I called the office because I felt gas pass thru. Nurse said it was normal. For the days after I’ve been sitting and taking it easy. Went back to work this past week and since I sit at a desk it’s been uncomfortable. Not much pain until today (yesterday only sitzed once) today just had my first sitz after work. I’ve had pain all day since the opening on outside closed up and seems to be collecting some pus.
    Anyone else experience something like this? Feels like will pop and drain since the skin is so thin. Otherwise I don’t really feel the tunnel as I did pre surgery thru the skin. I guess I need some reassurance that I am still on the way to healing. It’s been too long and has ruined my life. I just want to go to spinning again! :(
    How long is this process? I have a follow up in 2 weeks since the surgeon said 1 month after. So I guess it can be timely ?
    Thanks :)

    • If you’re really worried, I’d say try and make an appointment sooner (I’d also say go ahead and keep the one that is 2 weeks away too…because by then you’ll still want to know if there is a problem or if things are improving.) I’d say if you feel like it would help to see your doctor then do whatever to go see your doctor if you can.

  232. Has anyone ever been horribly contipated.after fistula surgery? Its friday and my dr. Office is closed and am wundering if i could use enema or will i tear it more if it eventually passes?

    • Hi Motherof2, the constipation is caused by the pain medication they put you on. Which pain meds are you taking? It can also be a symptom of the morphine given to you after surgery. It’s best to take a stool softener at the same time, in New Zealand I was told to take one called Movicol – I don’t know where you are, but perhaps ask for the equivalent, it’s a sachet that you mix with water :)

      • If you are on painkillers, it is possible they are causing some constipation. I would not use an enema without consulting your doctor first. You might try stool softeners – but I would be wary of anything that has a laxative in it. ‘Stool softeners’ and ‘laxatives’ are different things, but sometimes they are mixed together in medications. If you’ve just had surgery, a stool softener should be ok – but you might want to avoid a laxative that might keep you on the toilet repeatedly for hours.

      • My Dr put me on Oxy and 2 prescription stool softeners, Polyethylene and Docusate Sodium stating that pain killers does/will cause constipation. I would not use an enema because that will make you go in a way that is not that norm where as the softener will help the process go smoother.

  233. Hi all. I have good news. Southern General Hospital think my LIFT in September was a success and have discharged me. Hole where seton was has closed and no pus or blood for weeks. I truly thank God that after almost 7 years this has healed. I prayed for healing of this condition and he has answered.

    There were 4 LIFTs done that day and I was the first back and they were extremely happy with the result.

    I seem to be starting to get the old me back. My self confidence has increased and my general well being has been good.

    Kel, hope your appointment goes well on Friday and they offer you good options. Please post on how you get on.

    Thanks to everyone who has posted as you have helped me and I will still follow this forum. Forums like this do help you and you don’t feel alone with this condition.

    • Hey Andy

      Woooow great news Mr, bet you have a spring in your step :) plus it’s reassuring to hear that this LIFT procedure has success…..I’m well happy for you!!! Hopefully one day I’ll be typing a similar message. My appointment for December has been rescheduled so many times. My seton been in place since sept 11 and no one has checked it since then, my appointment is now 30 jan. I’ve not been too bothered as I have no pain now and if I don’t have alcohol and good diet it feels like it’s drying up. Hence I’ve returned to work full duties and collecting sick days in case I need it for The next Op :/ so my plan is to have a fab festive season and get straight on the case in January. Once again I’m well chuffed for you and fingers crossed you’ve beat this monster :D

      Take care

      Kel

  234. Please read this all the way threw, I’m desperate and I need help!!!

    I’m a 22 year old female from New York. About three years or so ago I started dealing with an anal fistula. I had a seton placed, then the plug surgery which failed, then another surgery to remove the plug and place another seton. Irritating and so uncomfortable! Every two weeks or so the seton knot would shift into my body which is insainly painful and I’d have to go back to my surgeon for her to move it.
    I had to keep the second seton in for a really long time because my home was being renovated and I couldn’t recover from another surgery in comfort. But finally about a year after the second seton I was able to have the flap surgery on July 2nd 2013. I was told time and time again this surgery was better, would be more invasive, more recovery but more successful. And it was, it was incredible invasive and the recovery was about 6 weeks. I stayed in bed or on my couch for 6 straight weeks. Then when I was able to move I had to keep it to a minimum. My first time out with friends in about 2 months I somehow contracted MRSA, a terrible infection on my leg because my immune system was so low. So then I spent another 3 weeks recovering and staying far away from everyone, even family because MRSA is contagious. But whatever…
    The flap surgery seemed to be successful, I would go back to my surgeon every 6 weeks and she was very positive. I was in no pain and I felt positive about my future!! Until I saw her on Oct 28th, a day before my 22nd birthday I might add… She advised I get an anal MRI to check the progress, but she still sounded positive to me.
    So I got the MRI which was uncomfortable. And then made an appt to see her to discuss the results on December 2nd.
    Terrible news, the flap failed. So here I am again at step 1! I have to get another surgery to place another seton and then eventually another surgery to hopefully finally end all this fucking misery!

    I don’t know how any of you stay positive!! This has been the worst experience I’ve even had to deal with. I feel sad and angry and like I’ve failed again.
    I can’t do what other twenty something’s do, I can’t just up and go on a road trip with friends because I need to take 3 baths a day. I can’t work out like I used to so I’ve gained a disgusting amount of weight. I’m scared to plan for my future because who knows what will happen next!!
    Are all there surgery hurting my nerve endings in the area? Wreaking my sphincter? Will I become incontinent at 22?!? Why do theses surgeries keep failing?!
    What have you all heard or experienced with the LIFT surgery? That’s what my surgeon has suggested next.
    I don’t trust my current surgeon anymore because she’s failed me twice, I understand that even the greatest doctors make mistakes sometimes and sometimes it’s not even something they did it’s just what happens, but I’m hurt and disheartened and I don’t trust her anymore…
    I don’t know what to do! I don’t have time for another surgery!! I’m still in school, I have one semester left to graduate I can’t postpone it. I don’t want to postpone it!
    This just isn’t fair!! Why me?!
    I’m angry and upset and frustrated! I know I’m lucky I’m not dying but this whole thing sucks…

    So basically, sorry for my freak out but I don’t know what else to do…
    Should I try the Lift procedure?

    Thank you all. Goodnight <3

    • Deirdre,

      I feel your pain, I am 32 and was diagnosed 2 years ago on my second seton and a failed flap. Have you looked into the diet options this site provides. In April I was so frustrated to have to start all over and for my husband and I ment postponing family planning which neither of us are getting younger. I started the gluten free, dairy free, soy free and very limited corn. And it has made a huge difference. I still have a seton in but this is a personal choice as I want kids before another major surgery. However no pain, limited drainage no baths, I exercise 5-6 days per week including spin class now. I also went from oxycoine and larasapaine daily and Ibprophine 2 times per day to no meds now in 4 months cause I have had no pain.

      I always in courage second options but in my case my second option doc told me I was crazy to not use my original doctor. He reinforced fisturals are difficult to heal. My current doctor has insured she will heal it but she can’t say how many surgery sit will take. But she has said she has yet to have one that did not heal eventually.

      As for the seton, I have one in that freely moves around so every time I use the bathroom I just pull on it a little bit to make sure the knot comes back externally. Keep a box a gloves next to the toilet if you don’t like touching it with your fingers directly. My doctor did not tell me after the first seton I could move it myself, what a world of a difference it made with the second one.

      I do wish I bought stock in always pads when thus first started cause I do use 2-3 daily makes me feel cleaner and makes drainage easy to deal with….

      As for staying positive it was hard at time, my poor husband dealt with so many emotional roller coaster. But connecting with others who could relate was. A big help this site helped me a lot….

      Good luck

    • Hi !

      I am suffering from this problem almost 11 months now. I had Anal Fistula Plug surgery. I have draininage 24×7 since 11 months day or night.

      Only advise I can give is the diet plan I am following:

      I am taking good meal only 2 times and that too with too much fiber.. I take flax seed almost 5-10 big spoons in my meals.

      http://www.hollandandbarrett.ie/pages/product_detail.asp?pid=1893&prodid=2071&cid=20

      After the meal if I feel hungry, I take mostly all vegetables and fruits raw this helps to buy some time.

      Also after each meal, I am not consuming water at least 1 hour, this will enhance digestion process of our food.

      After each meal I am taking capsules of slippery elm bark casules.

      http://www.hollandandbarrett.ie/pages/product_detail.asp?pid=417

      By having above regime into my diet, I can at least have happy face after bowel movements each day.

      Good Luck to all…!!

      Wish you all a speedy recovery..!!

      Regards
      Chirag

    • hi you poor sufferer,
      I am from Australia and dealing with all this shit for past 3 years and 12 Seton and pigs-line plug the last 4 ops in private hosp where he did not even give me estimate and it cost me over 10 grant. it was just an abbesses to start of but then you know how it goes, no proper investigation so they just diged in and put me on all sorts of addictive meds for pain management which was just the shop with lots of side effects. The main problem in my opinion is that the bloody surgeons in capitalist countries don’t have proper indemnity insurance
      to cover them for astorma (hartman) operation or colostomy where they put temporary bag so the shit does not push through fistula track every time opening the bowl and reinfecting time and time again. long story short I have been in touch with German surgeons and guess what? they will fix it once for good, get in touch with any hosp in there and they tell ya that they never allow it to get that bad and once you are admitted you will not be discharged before you good, cause apparently they work for a set wage and the main goal is to heal people unlike our countries whom see the dollar the more operations they make so go there for visit and get your self checked out. I try to keep updating once i manage to borrow enough cash to get there, after that they will make payment plan to pay it off as you go once you fixed.

      good luck

  235. Hey
    I am scheduled to have an advancement flap procedure done on Thursday 12/12. I am very discouraged that it probably wont work. I really want my doctor to keep me in the hospital for at least 24 hours but she wont. She said that there is no medical evidence that suggests that staying in the hospital increases your chance of success. I have been reading peoples stories online and a lot of people with successful flap procedures stayed in the hospital. How can I get my doctor to keep me in the hospital?

    • Hi Alyssa, I had an advancement flap, and it was successful. I stayed in hospital over night and then stayed in bed at home for 6 weeks. I think that the key is little movement, and you can do that at home. I’m not sure what country you’re in, but in New Zealand we have district nurses, I had one visit me every day for the first week and then every few days. I also made sure I kept on top of my pain medication and stool softener, and gave myself plenty of time to heal with very little movement before going back to work. 6 weeks! And even when you’re feeling better, keep resting!
      Good luck for your surgery, let us all know how you get on. And be positive! You say that you are very discouraged that it probably won’t work… why? Who says it’s not going to work? Think positively and be strong :)

      • I’m discouraged because it’s my 4th procedure this year. I am from the United States and I got a second opinion from the chief of colorectal surgery at a teaching hospital in Wisconsin and he basically said that it’s not going to work and he would never do it. My internal opening is very low almost external and that makes it difficult to do a flap. The second opinion doctor wanted to cut muscle. I’m not at that point yet. I kept my surgery date because of insurance issues and financial issues. I think the doctor is going to do a flap going from the outside to the inside instead of inside and pulling the flap down. I’m only 25 years old I don’t want to deal with this anymore but I have no choice. :(

      • Hi Alyssa, the fact that you’re 25 is a good thing, it means you’re more likely to heal faster :) I had 7 surgeries, the advancement flap being my last one, and that worked, it was 2 years ago now and I’m still fine. I’m 35.
        You have lots of things on your side… your youth, and the fact that your fistula tract is low… that probably means they could lay it open. I had two fistulas and they were both very high and complex, so harder to treat. You’re going to get better, and you’ll be ok, it may be a long road, but you’ll get there. The best thing you can do is change your diet, get yourself into the most healthiest condition you’ve ever been in, lots of vitamins, supplements and vigilant hygiene… and you’ll get better :) I have my fingers and toes crossed for your advancement flap – be positive :)

      • Thanks everyone for your advice. I had my surgery they did an advancement flap and a rotational flap (comes from the side) yesterday. I’m am in quite a bit of pain but that’s to be expected. Did any of you who had the flap surgery have a lot of gas after surgery? I haven’t experienced this with my other surgeries so I’m wondering if anyone else has dealt with this

    • Hi
      I had flap surgery in July and so far it seems to have worked. My surgeon kept me in hosp for 3 nights as he kept me nil by mouth for two days then just light food. Don’t know if this contributed to my success (thus far as still may fail) but it’s his practice and he has a very high success rate.
      Failing that just take time off work and have rest for at least a month. I think sometimes it can just be the luck of the draw. But my surgeon recommended rest, light diet and no exercise for at least a month. Good luck and try to think positively!

  236. Hi,
    I wanted to put a positive story up as when I was first diagnosed I came to this site and really panicked after reading lots of the anecdotes.

    I have been suffering from fistulas approx 14 years having never sought treatment being 14yo when it started. January of this year I got another (very large) absess and was forced to see a doctor. He passed it off as an ingrown hair and prescribed antibiotics – these didnt work. I returned and was given more, these also didnt work. The absess then burst through rather dramatically. I then asked to be referred to a specialist.

    With one look from the surgeon I was immediately diagnosed with 3 fistula (positioned at 01:50 on a clock) and was booked in for him to have a look inside. The surgeon insisted I had surgery as soon as possible saying I was running the risk of another absess which could burst and give me blood poisoning. As you may be able to tell I was initially reluctant for surgery, he insisted nothing else would work.

    It was June by the time this came about and being self employed and a fitness fanatic I was very concerned about the whole press and the impact it would have on my life. There wasnt much discussion initially to the surgery plan as it was all dependent on what was found. Which only lead to endless nights on the internet searching for possible outcomes, being the eternal pessimist these were always worst case scenario.
    Unfortunately there were 2 tracts and BOTH were high so I came round thinking I had had them layed open. Sadly not, I had had 2 drainage setons put in the tracts (silk thread passing through the tract into and then out of the anus and then tied in a loop). The next day I launched a new business into which I had invested my life savings.

    Looking back THIS was the worst time throughout the process. I had 1 weeks worth of painkillers, very little after care from the hospital and had LOTS of questions which again lead me to the internet. I was then convinced I had chrone’s disease and was facing a lifetime of drainage or even cutting setons and multiple surgeries.

    Cutting a long story short I had repeated trips to see the surgeon, where he was essentially assessing how I was coping. Living with the setons was very difficult, with them being on opposite sides of one another, when I stood up they rubbed together. Sometimes the knots would enter my anus and would be extremely uncomfortable. Sitting was impossible unless on a blow up ring. I had to have a shower everytime I opened my bowels which made maintaining a ‘normal’ lifestyle difficult let alone an ‘active’ one. I had had 2 painful bouts of infection where each opening became very angry and swollen and was spening 99% of my time lay down. I was pushing my surgeon for at least an ‘end goal’ date as the lack of finishline was really getting to me mentally. i was also stuggling running my 2 business and keeping my head in the game.

    An MRI scan showed the tracts were making progress but one was still relatively high, so my surgeon was reluctant to go in for a few more weeks.

    Finally 5 months after the setons were put in I was put under for him to have a look. There were 3 possible outcomes. 1. tracts still to high to lay open (involving too much sphincter) setons removed and replaced 2. 1 tract layed open 2nd tract having the seton replaced. 3. Both tracts laid open. To me this was the only ‘good’ possible outcome.

    So I woke up from the op and my first question was ‘did he do both sides?’ to which they answered ‘yes’, doped up on morphine I practically threw a party – ‘but we are keeping you in overnight as it was a the wound is very deep’, I didnt care the setons were gone!

    So when home I was having nurses come to my house daily to change and ‘pack’ the wound so it would heal from the inside out (they didnt want it closing up and risk having a pocket). The wound was VERY deep, I had a few nurses say ‘Oh my God, this is DEEP, I mean really DEEP’ which surprised me as I expected theyd have seen much worse in their time and these werent young nurses.

    TRAMADOL is Awesome

    I was keen to know how long it would take for me to be at least back on my feet, but they were reluctant to give me a timeframe as everyone heals differently. I wanted to be better by new year (aprox 1 year from the absess and 7 weeks from my op) but they were sceptical telling me to expect 8 weeks and at least 6 of dressings.

    I am now just over 4 weeks since that op, the surgeon has advised not dressing the wound to get oxygen to it and the nurses have said it no longer needs packing as it has filed in nicely. Its not fully healed and I still wear a pad just to catch any leaks.

    My biggest worry in all of this was becoming incontinent, I cant imagine how life would be with such an issue and my heart goes out to anyone suffering. It may be the fact Im Male, young (28) and weight train/have a good diet that I have healed so fast and my sphincter has been able to take being cut in two places. Its in the back of my head that this may come back….but my surgeon insisted that being a non smoker and there being no bowel issues that the odds are good and I was just unlucky in the first place.

    Sorry for the wordy story, I just hope if anyone is reading this like I was initially they can take this from it.

    Setons are NOT the end of the world and the longer you can get on with life with them in the better. Its seems having the tracts laid open is the best procedure for stopping them returning and so this is your end goal. Setons are what will get you there.

    Today I drove my car, sat in a shopping centre with my girlfriend for something to eat, wandered around some shops and saw my nephews and niece. All thing I have struggled to do for at least the past 6-12 months. You will get there. I did.

    Sam
    (fingers crossed for you all)

  237. Hello
    i have had Crohns for 25 years, I’m now 54.
    Four years ago I developed a fistula which my consultant advised to have surgically repaired.
    After reading up on the surgery I decided not to go for that option.
    Over the next two years I was forever taking anti biotics to clear up infections which kept reoccurring.
    Then I started taking Garlic Capsules , 4/5 each day and I have not suffered any infections since!
    Because of no more infections my fistula has completely healed.
    I continue to take 2 garlic capsules a day and this option has completely worked.
    I thought that by sharing my story this may help someone out there.

    Alan

    • Hi Alan,

      Thanks for sharing your story. I have started taking garlic capsules as well as doing a garlic enema after bowel movements, but still there is persistant drainage.

      Can you please provide the timeline regarding how much time does it start to show some kind of effects.

      /Chirag

    • Garlic is not the permanent remedy for fistula. Body always try to heal any wound. In fistula it happens many times that it get healed partially. Most of the time external hole gets closed & the discharge stops. Many people ( even quacks/ fraud doctors) get convinced about the cure of fistula by their miraculous remedy. My friend don’t live in assumption. Its OK that fistula is symptom-less. Do’t assume it has cured permanently. Keep watching. If it started collecting infection then you have to treat it. Also you should conform fistula cure not by symptoms but by MRI or fistulogram. Best of luck…

  238. Hi All! My Name is Jay, i had my op to for a fistula 3 months ago. in my post op visit to my Doctor i was told the op was a success, but i still suffer
    a bit, although it is more discomfort rather than pain, i from time to time still feel a bit of ache in the lower back and still a degree of loss of bowel movement control and the inner area still remains sensative towards the cleansing process, would you Guys know of any ointment or cream that can be used ( rhe lack of bowel movement control is a real nuisanse

  239. I have a question about the fistulotomy, which I’m scheduled to have on Friday. I’ve heard people talking about nurses coming to “pack”, but when I brought this up to my CRS, he said that I wouldn’t have that? Is this typical? I have a superficial fistula, have had it a long time. Am very nervous about the surgery!

    • I was packed after 7 surgeries and it was an awful experience. I changed surgeons and they did not pack the wound and the healing was better probably because I didnt have to suffer daily packung. So dont b questioning his decision. Take care

  240. my question is that my friend unwent an operation of anal fistula on 30 dec 2013 and now he’s under the healing process, but sometimes blood comes out, and it is cut open without any stiches. He always scared and thinking how wil it heal. He is losing hope.
    Can you please tel me how wil it heal and sometimes he’s not even having motion!
    What diet chart should he follow?
    Please help!

    • The open wound heals surprisingly well. Pl tell your friend to be patient and keep the wound clean.

      • hi fellow sufferers :-)

        i was operated for HIGH FISUTLA IN ANO on 25-4-13.

        Laid open from lower back to anus ever since my 22 stiches were cut open ( read my experience which i had posted earlier in July 2013)….but to my relief i have been almost cured so far after a long recovery of 9 months to be precise.

        Thanks to my Surgeon (Dr. Chandarana – Kandivali West, Mumbai) He has been a angel…..always kept my spirits high when i was low mentally.

        All i suggest to everyone is….Fistula is something that doesnt happen to every 3rd person…its just our bad luck. Keep a very high self hygiene….The only cure to my open wound is taking Sitz Bath for 15-20 mins. morning & evening (Or on Passing of stool). HydroHeal Am Gel for initial 4 mnths & later Oxoferene drops for dressing my wound helped me a lot. as i share my experience i have been not yet stopped my dressing as there still exists a small anal fissure which is being cured if not aggrevated further.

        i hope my suggestions & experience with medications helps some of you all.

        If you are in INDIA..Mumbai….consult Dr. Piyush Chandarana…..as you never know…..help & cure is in front & we search the world for answers to our agony.

        Regards,
        Miheer Desai

        GET WELL SOON….TAKE AMPLE REST.

  241. Hi I had fistula surgery back in sept 2013 which is 4 months ago I’ve been healed for 5 wks now but the last few days I’ve felt some slight pain snd uncomfort on the side where it was. Has anyone had this happen to them , I’m terrified of getting it back .

  242. I’m in so much pain, I can barely type. Every time I poop it gets clogged and then bursts, then seeps pus, then clear/ blood. I can’t take this pain. Right now it’s clogged and will bust soon (poop)

    I’ve had no surgeries … I want my life back!

    • I went on a full liquid diet for about 2-3 weeks until I can manage pain.

      Manuka Honey, Garlic Capsules, Neem powder, Yoghurt, Oregano Capsule, turmeric and Slippery Elm Tea capsule are must for daily intake.

      Take Milk and clarified butter at night before sleep.

      After each bowel movement if possible do garlic enema, salt enema at your convenience. This will remove the clogged particles in the rectum and you will feel good.

      Hopefully all will get healed of this monsterous devil disease…

      Good luck, have faith…

  243. I have an anal fistula which I’m getting removed Thursday. I developed another large lump in the crease of my leg and groin. It popped and leaked tons of clear fluid with a little blood, with a tiny amount of pus. Now it keeps filling up painfully with fluid and leaking. Is this just a nasty ingrown hair/pimple, or is a cyst/something I should contact my doctor about? Could it be connected to my fistula?

  244. I had an operation for a fistula on 28 December 2013. I saw the dr on 3 Januarie 2014. All was fine. But then on 16 January it started draining again. More than after surgery. He gave me antibiotics again. I feel a hard place again. Is the fistula growing again. I started my period as well, so I do not want to go too the dr right now. I have been on atibiotics since 19 Desember 2013. I feel like a pill!!! Can they only make a small cut? Can’t they remove it completely? I don’t want to go for this surgery every year, which I understand is possible.

    • As far as I know, a hard lump is an indication of possible pus collection again. Yours look like a complex fistula and MRI should be done. I got MRI only after my 3rd operation which revealed a complex horseshoe fistula. Thanks to Perfact operation….i m fine.

    • sir i am ajay ahuja from kota rajasthan in india i was laser opration fishtula 23 dec 2013 today 25 jan 2014 how many time pain after 4 week i went daily bathroom in the morning after bathroon sloly pain 3 hour and after 5 hour no pain . i want to now that how many time sloly pain and no pain in walking . but sleeping and sitting on chaire.

  245. Hi
    I just had a Seton surgery,for my fistula. Dies anyone know how long it,takes to heal fully and when bowel movements will,stop hurting? I’m,pretty much a week in and it,still hurts pretty bad…just looking,for,some peace of,mind that it will get better

    thanks

    • Hi Noel, I started feeling better after 2 weeks, and then much better after about 4 weeks. It takes time, lots of rest and be vigilant with hygiene so you don’t get an infection. It takes a while for the general anaesthetic to wear off, let alone the swelling etc to come down. You should have been given some sort of stool softening medication to help ease the pain of bowel movements. Hang in there, you’ll feel better, take it easy :)

      • thanks appreciate the response…ya definately having a lot of sitz baths at the moment…just more annoying than anything right now

    • Hi Noel

      I had a seton placed in sept 2013. Due to the operation and pain relief meds I didn’t have a BM for one week, however when the time came I didn’t have much pain, an occasional stabbing pain in my buttock going down my thigh, it was more burning/itching afterwards that irritated me most! After a couple of weeks this stopped. I still have the seton in, but I can’t stress enough about hygiene and good diet! I know when I have had fatty foods or alcohol the burning comes back. Invest in lots of flushable toilet wipes and square gauze to catch any drainage. At first my seton controlled my daily life, now 4 months in I control the seton and do everything I did before apart from swimming, chin up, Kel

      • Did it bleed ever?, like were the gauze ever covered in blood?

      • Also how long till you were able to sit down for a period of time. I can’t sit in a chair without it incredibly hurting, been a week since the procedure

      • I never even attempted to sit on my bottom for at least 2 weeks, lie down or stand up for a while, rest as much as possible. I definitely wouldn’t be sitting, it will be putting pressure on the tissue and wound. If you have to sit, I would suggest getting a donut pillow and have a walk around every 10 minutes.

  246. Hi guys

    I had fistula laid out last year however after three months it relapsed,now another fistula developed on the other side of my anus, I was admitted in hospital coz it was swollen and painfully, I had a surgery to drain and two seton placed in,I am having nightmares opening my bowels, also the seton irritate the muscle and causes pain me bottom is all sore…(pain in the ass) I spoke to surgeon and he told me he will send me for MRI to see if the two fistula are connected or how deep they are involved in the sphincter muscle, inshallah I am hoping with the Grace of GOD not to have another surgery,,,,,,,I would like to ask can fistula be signs of IBS diseases?

  247. I have been getting perianal abcess for the last two years a total of 13 and 22 operations and am sick of them. I just want to know if this is common! Mine are quite deep so require surgery each time. They have tryed drains, setons and are about to stitch a flap over internal opening in my bowel? I am only 23 and am hating all of this! Any advice I would love!! Thanks.

    • Hi !

      try garlic capsules , turmeric daily in meal.

      Take Slippery Elm Tea and clarified butter after each meal.

      Daily enema after bowel movements until the water is clean is quite a boon…
      It will remove all debris and hence lesser the infection.

      This needs to be done for at least 2 months to see significant improvements.

      Have faith..

      Chirag

      • Ok thanks so so much! mine are very deep ones though will this still help? trying the power of positive thinking for this flap operation to fix it all!!

  248. Hi
    Had an anal abscess cut open 6 weeks back which has practically healed. My problem is – every time the anal abscess heals there is considerable bleeding – noticeable fresh blood when I pass stools.

    Is this a sign if a fistula? My GP has still said it’s not a fistula ? Can anyone guide me..

    • I’m not a doctor, but usually if there’s fresh blood when you pass stools, it means there is a slight tear on your rectum… so maybe you have a fissure? Or it may just be a little scratch that reopens because of the pressure of having a bowel movement? Surely your GP can check to see if you have a little tear. It doesn’t mean you have a fistula, but I would go back for another check.

  249. Hi all,
    I don’t see my earlier post so here is the solution to your problem once again.
    One table spoon of Ghee (try any Indian store around or try youtube to learn how to make it) and a glass of milk twice a day.Once in the morning on empty stomach and once before going to bed.Its a 2 week course.If it worked with my acute problem I don’t see why not with yours.Pl believe me and you will stand to lose nothing.I know many who got rid of their fistula/abscess.For ease of consumption add a spoonful of honey.I also added a table spoonful of husk seeds (at night) to soften the stool.
    And now GOODBYE to this exquisite inconvenience after 9 days of use.For any more details pl write mail.

    • Hi Amnoguru,

      I am trying this since almost a year now. Ghee helps to pass the stool easily but everytime after the bowel movement, there is infection which creates pus for 2-3 hours.

      Hence I am doing an enema to get rid of extra debris in anal channel. This enema seems to have reduced infection but I am not sure for how long should I do this.

      Pl advise

      • I wouldn’t do an enema. I would get a sitz bath though. Use that instead. Add a small bit of bleach, or eucalyptus oil to the hot water in the sitz bath (careful, eucalyptus oil on your testicles is not pleasant). Sit for 20 minutes. Do this twice daily. Stop eating foods that cause diharrea. Stop eating greasy foods. Don’t drink coffee so much. Drink a lot of water. Eat more fibre. You can and will get through this.

  250. I’ve been dealing with a fistula for about a year now, it all started with a abscess….in which we drained then. The fistula.appeared, I underwent a fistulectomy and the initial pain is gone, however I’m still left with the.gas and discharge. I was wondering how.long I.should expect this, and is this natural.

    • It’s natural. I’m going through it as well. Your body is telling you something. From what I gathered about my own experience (and having the surgery done twice), your body has been telling you something, since before you had the surgery, and before you experienced the fistula in the first place.

      Before I noticed the fistula the first time, I was smoking heavily, drinking a lot, eating a lot, just downright not taking care of myself. Since having the surgery the second time, I have gone from eating greasy, meaty foods without a proper balance inclusive of fruits and vegetables, to a diet almost void of meat altogether, and a lot more fruits and vegetables. I also exercise more.

      Change your diet to start with. What kinds of foods are you eating that cause the gas? Keep a record of when and what you eat, and how much of it you put into your body, then keep record of your flatulence (I hope that was stated appropriately). Your body will need time to adjust.

      I am not a doctor, just someone who understands wholeheartedly where you are coming from.

  251. chirag,I really can’t answer your query as I am not qualified to do so.All I know is that my own suffering started about a month ago and a good person advised me to try out milk/ghee concoction.After 7 or 8 days the pus and blood discharge stopped and the abscess shrunk.A day or 2 later even the painful discomfort disappeared( I just hope I am not saying it too soon.)As I said before I added husk seeds(isabgol) in my milk to soften the stool motion.
    On a little investigation I found out that ghee contains some healing bacteria,enzymes that help the recovery.However,reading about all the surgeries on this blog and the torture that follows,a simple trial with milk and ghee is worth it.In fact I just learned that 100’s of sufferers got rid of this dreaded problem with this magnificent mixture.(by the way I used home made ghee).
    best wishes for a quick recovery.

  252. I wld like 2 start a support group 4 people who r in south africa gauteng province, I leave with his pain daily so I need people who share the same pain n let’s support each other n share remedies that helps to deal with the pain. I had two operations done but it has not helped

  253. DECEMBER 2013 I m suffering from abcess then done operation on 6 december 2013 by surgeon doctor , after 10 day submission from hospital.they discharge me and told for dressing and I gonna for dressing about 4 week almost wound heald then suddenly disharcing pus from wound. then , after2 months I visit to same doctor then he told me its make FISTULA. now he told me for again surgery.
    I am in tense . help me out what I do. its in perianal region.

  254. I have had 3 operations in last 7 weeks. The last one they saw its a horseshoe absess. This was 2 weeks ago. It still drains and dr told me last week that I must massage it when Im taking my salt baths. How long will it drain. When I poo it is very sore. So I would like to know when will it back to normal. I do drink stuff to keep my bowls soft. Even when I pass gas it feels like the wounds tear open again. Dr said first dr that operated made mistake in cutting the draining holes, so 2nd dr opened those holes bigger and deeper than normal otherwise he had to make a 5cm cut and then I would have had a open wound for 3 months. I drink pain pills every 5/6 hours

    • When I had my first operation, the doctor DELIBERATELY left the procedure incomplete so I would come back to have it again. He told me that I would not have to come back but sure enough, four months later, I was back in his office and he was like “oh, my, well, it has come back, you need another procedure.” I know how you feel about this, it’s frustrating. What I recommend is that you drink only fruit smoothies for the next two weeks, and take protein supplements. IF your doctor is telling to you massage the wound? I don’t know about that. I’m not a doctor. I wouldn’t do it. I would however, use a sitz bath. Best invention ever (for this condition). Use it twice daily.

  255. My fistulectomy done on14.9.2013 in Apollo hospital,chennai.still i have suffering from pus discharge and pain.what should i do?

    • I tried to wait for mine to dry up. It did. But another one came back. My first fistulotomy surgery was in 2011, another in 2012. I didn’t have one in 13 because I waved to see if it would dry up. Today I had my second surgery along with a colonoscopy finally. They put in a seton and said that they’re sending me to a butt specialist. But I hope that the seton works so I won’t have to do that.

  256. sir,
    I have been suffering from fistula -in-ano for the last 5 years. Initially when it appeared it was really painful.Intially i was given some antibiotics but it did not heal.Later i took the shelter of homeopathy.Somehow, i am not so sure it relieved me off burning pain and pus formation to an extent. Daily it does not so nagging but at times it is painful and irritating. I am a very active person as i am in armed forces. Please let me know a painless and short recovery treatment may be a surgery .I will be very thankful to you for this kind help.

    • Hi Arvind,

      I would recommend to go for AFP Anal Fistula Plug if you want to go for surgery or place a seton till the fistula are healed from inside out.

      AFP or seton will help in passage of pus/drainage infection smoothly with minimal pain.

      The actual healing is still quite tricky. Use garlic enema/ sanitised water enema after each bowel movement to make anal channel clean and then apply some antiseptic ointment gel not cream or antibiotic cream. This will provide some buy in time for your body to get rid off the fistula.

      Take ghee+turmeric+milk before sleep one glass and one in the morning before any breakfast.

      Be hopeful..!!

      Regards
      Chirag

  257. I need help , I am 17 and I developed a rectal abscess I had it drained 4 days
    ago and it felt good on the first day , ( drainage was the worst pain I’d had in my life ) I had the drainage , after the next few days the pain got worse and worse and I felt a burning and aching feeling every couple minutes . I fel some kind of a sore lump close to mu anus which hurts . Is it normal for me to feel pain after a few days of the drainage . Is it normal to have painful bowel movements becaud of the drainage . Should I go to th hospital? I’m so stressed right now and in pain . I take sitz baths every day three times a day . I don’t no what to do , I’m scared If they are going to drain it again if I go to the hospital it was so. Painful. Please help

    • You probably have a fistula. And you should go to your primary doctor so he or she can refer you to a specialist. I had to have surgery on mine. Yesterday was my 3rd surgery. Good luck

    • It’s totally understandable that you are scared, but you need to go and see a doctor. If you have a fistula, or there is an abscess in there that needs to be drained, you need to see a professional. It’s much better for your health to go and deal with it, rather than to leave it. You’ll be ok, and you’ll feel so much better after you’ve spoken to a doctor/specialist and know exactly what is going on.

      • I agree

      • Hey i just ca me back from er, and the doc checked m’y swollen abscess and Saïd it needs more time to heal so he gave me pain medication and stool softener . I was just wondering instead of using gauze can I use cotton medic balls . Also is it normal for me tobe in this discomfort after my drainage. Finnally is it Normal for ny wound to get a bit swollen cause the doc said it’s still healing

      • No you can’t use cotton balls. The whole point of using gauze is so it doesn’t stick as much. If your abscess is still draining, and you use cotton balls, all the little fluffy stuff will stick and it’s very difficult to get it out of your skin once it starts healing. The professionals give you gauze etc for a reason – so it’s best to just do what they say. What did they do initially? Did they lance it? In which case, yes you will have swelling and pain. The pain medication will make you constipated, which is why they have given you stool softener to combat the constipation. Next time you go to the doctor, please make sure you ask him/her all of these questions, write them down if you have to. I’m not a doctor, I’m just speaking from my own experience, but you should ask them these questions to get accurate answers. Make sure you eat very healthy, rest a lot, drinks loads of water, get your body very healthy and pure, and make sure you clean clean clean, especially after every bowel movement, and you may be ok. Good luck, and keep us updated!

      • Listen you need to try not to panic, clean yourself up, get in the bath, and go and see the doctor again. If you live with your parents, that’s great, they can help to look after you.

      • Update I just came back from the emergency after my rectal abscess bursted open with blood and pus waking me up .The doctor cleaned it up and said it needed more draining . So he stool in some gauze and sent me home . Me being in so much shock I forgot to ask him some questions that u guys might have the answer too. First do I take out the gauze that he packed deep into the wound when I try to take a sitz bath, and do I take the gauze out when I poo? Was it normal fir my already drained abscess to Swole up and burst open like that . I feel better but rather in shock thank you .

      • Sam, my plug came out the first day because I crapped on myself. (Embarrassing but happened) and I had to clean myself up. The plug came out as I removed my plug. I have had 3 surgeries and it freaks me out eve