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

My Experience

As it is so helpful to hear the experiences of others, I thought I would share my experience of the last 2 years……

I went to the doctor in December 2009 because I had a sore patch on my bum cheek that felt like it was quite far under the surface. The first doctor I went to told me it was a boil and prescribed me with antibiotics. After taking those for a week, nothing changed and the pain started getting worse, so I went to a second doctor. This doctor told me that it could be an abcess and that I should try taking a different type of antibiotics, which I did for a week. This also didn’t work. By now, the pain is very bad, and I was meant to be boarding a plane in a few days time to Australia for a 3 week holiday which I had already booked and paid for. I decided to go and see a third doctor for yet another opinion, she told me that it was definately an abcess and that I would need to have it lanced, but that it could probably wait until I got back from Australia. She gave me more antibiotics, this was the third different type of antibiotic that I had taken, and meant that I had been on antiobiotics solidly for 8 weeks. Because the antibiotics stripped my body, my immune system was in a very poor state and I was subseptable to bugs. A few days after seeing the third doctor, I woke up one morning and the pain was severe, I called my sister and she came over and took me into the Emergency department in the hospital. The doctors put me into a hospital bed and started to give me morphine, they did an examination and decided I needed to go into surgery. Needless to say I had to cancel my big holiday and lost money on that.

I had a wait over night in a ward on morphine before I could get into surgery, during which time I contracted a superbug because my immune system was so low with all the antibiotics I had been taking. The bug I contracted was called Clostridium difficile, it is is the most serious cause of antibiotic-associated diarrhea. As this bug is extremely contagious, dangerous and in some cases life threatening, the doctors put me into an isolation room where I stayed for 8 days.

I was taken in for surgery where the surgeons drained the abcess and placed a seton through the fistula that had occured as a result of the abcess infection. By the next day, I had gotten worse so they put me into surgery again, this is when they found a second, larger abcess which they also drained. I remained in isolation until my vitals all became ‘normal’, I was then sent home 2 days before Christmas where I stayed resting and a district nurse would come around and check my wounds where the seton came out.

I was told that I could possibly have corrective surgery in 6 weeks time, this was not the case. I had further surgery in February 2010 where they replaced the seton. Then in July I started feeling very sick again, and noticed further pain in my bottom. I went back into surgery where they discovered I had a second fistula. They placed another seton inside my body. I then had to live with two setons, both of which were in a loop going through my anus, through each fistula, and out the exit hole in my bottom cheek where the fistulas ran to, and tied together in a big knot. Setons are hard to live with, they’re uncomfortable, painful. It changed my life because I’d always been so active, but I found myself unable to exercise, having to live my life at a slower pace, working shorter hours and not socialising as much.

The surgeons thought that they could do my repair surgery in November 2010. Once I again I had bad news, the infection had spread again and I would need further surgery to drain more pus and re-place the setons. I was having to take a lot of time off work for all of these operations, which put my annual leave into arrears, and I spent my holidays sick in bed.

Finally on Christmas Eve 2010 my surgeon called me and said that they were going to do the repair surgery in January 2011. I have since had the advancement flap surgery, this has a 50% chance of working and is very painful. The surgeons folded a flap of tissue back over the two holes where my fistulas started, they then stitched around the flap with disolvable stitches. It’s been 2 weeks since I had surgery, my surgeon suggested taking 3 weeks off which I have done. Bed rest, healthy food, lots of water and sleep, plus plenty of pain killers! I am feeling good so far, I had a 2 week check up where they said that the flap looks like it is taking and attaching itself, so that is good news. The pus and blood is slowly drying out and I am not having to change the pads as often, and I’m starting to feel a lot brighter in myself.

I am starting oxygen therapy next week which will hopefully help the flap to take better, I want to give it as much of a chance, the 50% success rate makes me anxious, but staying positive is key.

So after 14months of pain, embarrassment, awful examinations, 6 surgeries under general anesthetic and a lot of time off work, I seem to be finally getting better. I will keep you updated with what happens, and please share your story on this website, as it’s so helpful for other fistula sufferers to know that they are not alone.

All of my surgeries were done on public health, so did not cost me anything. If you have full health insurance, you should be covered and should be able to go to a private clinic. If you chose to go private without insurance, it will be costly. I discovered that the surgeons working under the public health system were the same surgeons that were working in the private clinics, so it made no difference to me whether I went public or private. The only difference would be that you would have your own room in the hospital and better food!

UPDATE -  3 weeks after surgery and I am experiencing shooting pains through my bottom cheek, I’m also bleeding when I have a bowel movement, and I have a very hot pain in a localised area on my bottom cheek. I have made an appointment to see my surgeon so they can check that everything is ok, will keep you posted.

UPDATE – 6 weeks after surgery and my wound (exit hole) on my bottom cheek where the seton came out burst open!! I got a massive fright, it was so painful when it opened, and there was a lot of blood coming out for about 12 hours. I went into hospital and my surgeon said that it can sometimes happen because the tissue is so thin and it takes a long time to heal over properly. Still not sure if my flap is healing but he said that everything seems to be on track so far.

UPDATE – So it’s been nearly 6 months now since my surgery. I had six weeks of Oxygen Therapy, which really seemed to help me, it felt like it was drying my fistula up and helping me heal. I had a check up with my surgeon a couple of days ago. And he said that it looks as though my FLAP or LIFT surgery has worked. BUT I have a wound sinus.  A wound sinus is a small tract through a wound that can hold infection. So unfortunately, it looks as though my fistula hasn’t healed properly, and this could potentially make everything bad again. My surgeon booked me another appointment in another 2 months and said they only thing they can do for now is keep an eye on it. I am in pain again though, and feel like I have a small infection so will probably do another course of Antibiotics. The saga continues!!

UPDATE – OK, so now nearly 8 months since my surgery and I have been on antibiotics 4 times to try and keep from re abscessing. I went to the doctor on Friday and she believes I have another perianal abscess. As you can imagine, I’m really devastated as this could mean I will have another seton placed in surgery. I have been booked in for an MRI scan which I will hopefully get in the next week or 2. After the results come back, my surgeon is going to decide what surgery I will need.

UPDATE - My surgeon sent me off to have another MRI scan a couple of weeks ago. I have had the results back, and he said that I have a ‘Wound Sinus’ which is dipping into my advancement flap. There’s nothing they can do at this stage other than keep an eye on it to make sure it doesn’t turn into another fistula.
I find that some days I have pain that feels like an abscess, and other days I don’t. It all relates to what I’m eating, how busy/stressed I am, and if I’m doing any exercise.
They put me on 10 days of Antibiotics and that seemed to clear up the infection (abscess), so at this stage I’m not having surgery. But my surgeon told me to come in straight away if the pain comes back, and he will operate immediately to drain the infection out.
I’ve moved house and am now living right next to a park. So I’ve been walking around the park every day, not fast, just a leisurely walk, for about 30 minutes, and it’s making a HUGE difference to the pain. I think that the blood circulation, the oxygen and the muscle regeneration is all helping me keep away any infection. So I would suggest trying it, if you have a seton, just walk slowly, and don’t go too far, take deep breaths and move your arms to get your heart pumping. Maybe try it for a week or two and see if it makes you feel any better! Let me know if it does!! :)

UPDATE – So I’ve had about 6 months of no pain at all, and then all of a sudden 2 weeks ago, it all came back! I’ve been on Antibiotics for 2 weeks now to try to settle the infection. And I have an appointment with my surgeon next week. Hopefully it will all be gone and I won’t need surgery. But at this stage, my bum is very sore, so I have a feeling something is wrong. I’m trying to be positive and hope for the best. As well as keep my walking up. I’ve decided that the best thing to think to yourself is “If you need surgery, so be it. You just have to do what you have to do, and it could be worse, so just smile and get on with fixing the problem” :)

 

317 Responses to “My Experience”

  1. Update: 3 weeks after surgery and I am experiencing shooting pains through my bottom cheek, I’m also bleeding when I have a bowel movement, and I have a very hot pain in a localised area on my bottom cheek. I have made an appointment to see my surgeon so they can check that everything is ok, will keep you posted.

  2. Hey sausage

    Good job with the website man!
    You are a most awesome & amazing little lizard you are!

    Keep on smiling dingus xxxx

  3. Thank you for starting a website for all of us that have this dreaded condition. It is good to have contact with others going through the same problems, pain and challenges. I hope your flap heals — although the pains you were feeling are concerning.

    My story is a bit similar to yours. My fistula started a year ago and thus far I have had 8 surgeries and am not done….ugh. I will post my story another time — it is getting late here in the United States!!

    I will pray for your continued improvement and successful healing of your flap surgery!

    one quick question — do you have Crohns or IBS?? I don’t have either. Just curious.

    • Hey Diane, No I don’t have Crohns or IBS either. I should have stipulated that, sorry. My surgeon told me that it was just very bad luck for me to get this as I don’t have Crohns, they actually tested me twice for it by taking a biopsy while I was under general anesthetic, and both tests came back negative. Apparently you can have crohns in located areas, hence them doing two tests. I have so much empathy for people with Crohns, it must be so hard to live with, and obviously makes getting fistulas more likely.

    • This is a reply to Harish (entry above Diane61). A peri-anal abcess seldom heals through antibiotics although antibiotics will be needed to reduce infection if an operation is necessary. My peri-anal abcess was the size of a tennis ball when it was discovered and I had to have emergency surgery. It would be dangerous to your health to leave a peri-anal abcess in place if it is not responding to antibiotics. A good surgeon will do what’s best for your particular situation.
      Good luck and take care.

  4. Thank you for creating this site. I truly had no information on fistulas until I found the fistula support thread. I developed a fistula secondary to a perianal abscess November 2010. I have had a draining seton in for 3 weeks. My surgeon said after it’s drained for 6 weeks I will have the fibrin glue injection procedure. Like you, I was very active before this happened (ran 2 miles 3x a week; played with my two sons; volunteered at their school a lot, etc . . .) I hope your pain goes away soon. Look forward to updates.

    • Sorry to hear you’re going through this, they will fix it though, it might take longer than you think, but you’ll get better in the end…. and become more active again. It’s hard to get used to the lifestyle change, that’s for sure. Has your surgeon told you what the success rate is for the Fibrin Glue Injection?? They don’t do that procedure in New Zealand anymore. Keep me updated!!

    • How is your fistula draining now? Well? Has your surgeon told you that you’re on track for the fibrin glue injection? I hope you’re feeling better!!

    • I have been waiting for a surgery date for rectal fistula which is a result of an abscess. I got very sick over six months ago with very high fever and severe pain in my bum. I went on two round of very strong antibiotics and then was told by my surgeon that they will not work so stop taking them. I have been told I need two surgeries because my fistula is draining from inside and there needs to be an opening from outside of my anus. I have been draining for 7 months and am trying to deal with this in a positive manner. I am in a depression waiting for my surgery and am really tired if having bloody pus draining out of me all day long. I pray every day for the strength to get through this. I am waiting because the cancer patients get first priority and that is completely fair. I am a fitness and yoga instructor and have had to give up alot of work. I am very healthy i HAVE NOT EVEN HAD A COLD ON 4 YEARS so I am perplexed as to why this is happening to me. I am grateful to be waiting at this point I just hope and pray it all works out. Sending light and love to all of you that need healing. Namaste’

  5. I developed an abscess in March 2010 that formed a fistula. I don’t have Crohn’s or IBS — I guess I have EBL (Extraordinarily Bad Luck). Over the past year I have had 8 surgeries — drains, setons (both cutting and non-cutting) and the Plug (failed). Several of these surgeries included a lot of cutting to open the track and packing. During 2010 I missed 30 weeks of work and have finally gotten stabilized in December. I thought I was going to finally just have a seton (like many others) and move on with my life. I can deal with a drippy bum….but I continue to abscess…..uugghhh

    After all the infections, surgeries and repeat surgeries my CRS has determined that my underlying issue is that my body overheals by creating too much scar tissue. The seton is supposed to be a drain so you don’t re-abscess; however, my body has healed up tightly around the seton — thus it can’t drain. So, every two weeks I re-abscess and blow a new hole on my rear.

    Because of my over scarring, my plug surgery did not work and I am not a candidate for the flap or LIFT surgery……rather depressing. Because I was on so many pain killers and antibiotics last year my body was totally drained and out of sorts. So, at the prompting of my daughter (who is becoming a chiropractor) I began seeing a nutritional Dr to help my body recover. I can say that taking probiotics and supplements has helped a ton — I can work all day now and not be exhausted. My digestive system is also a lot happier now!!

    So, given surgery to fix my fistula is not an option for me and I am tired of abscessing two or three times a month I have a new plan. I plan to have the seton removed (it isn’t working very good anyways) and have a small catheter drain put into the track. I am hoping that my great overhealing skills will allow my body to heal the internal hole. I expect that it will take some time to heal.

    At this point I don’t think I have much to lose. I will see my CRS in a couple of weeks to confirm my plan. I figure since I am abscessing every two weeks now — what do I have to lose??

    I am tired of the abscessing controlling my life… I try to keep laughing — if you don’t find a way to laugh you will cry. So, I have decided that I no longer take a bath or a sitz bath — I now tell my boss that I need to leave early or arrive a bit late because I require “hydro therapy”!! ha ha!!

    • Hydro Therapy! :)
      Your story sounds simular to mine! We both don’t have IBS or Crohn’s disease, and we’ve both had numerous surgeries, repeat infections and repeat abscesses! It’s so hard to deal with and you do feel drained and sick most of the time. But you’re right, if you don’t find a way to laugh, you will cry. It’s amazing how much the right nutrition can make you feel better! I think it’s also important to keep talking about your symptoms with someone close to you, otherwise you end up thinking about everything too much yourself and getting anxious and unhappy.
      The small catheter drain sounds like a good plan, is that something your surgeon has done for fistulas before??
      Have they said that you’re eligible for the fibrin glue??

    • I love the hydro therapy comment! I’ll have to use that one at work! Lol :-). You’re right about laugh instead of crying. It helps get me through the day with two draining setons in. Suddenly, I’ve become much more succinct during work meetings to keep them shorter :-). Lol.

  6. Well, my surgeon doesn’t usually leave a mushroom drain in for an extended period, but since I heal more than other people we need to find a way to provide drainage since the seton provides no drainage for me. I am special!! LOL I am having the seton removed and a mushroom placed on Thursday morning. I plan on resting through the weekend and hope I can return to work on Monday.

    As for the fibrin glue — my CRS doesn’t do that procedure because it is not very successful. So I am counting on my body to overheal again and hopefully heal the hole on the inside — then we can get rid of the mushroom. Time will tell and I am ready to give it a whirl.

    Hope you are feeling better and your hole is healing. I know the feeling — I have that happen every 10 days or so. Not fun, but at least your body is purging the infection out. Hang in there — healing takes time!

  7. So good to find others that I can relate to!

    I had a big abscess excised March 2010 which took 10 weeks to heal and seemed to be fixed, all good. No IBS or Crohns here either. December 2010 woke up with burning pain, 3 months of antibiotics before NHS would investigate it further, while it burst through the skin.

    Had surgery two weeks ago – I have a complex fistula with a seton drain in it now. I’m finding it hard work, drain is very messy and sometimes very painful but then I guess thats why its there. Like many of you have said, I was very active before this took over, two dressage horses, lots of walking and riding and now I’m grounded.

    Thanks for the good advice.

    • Hi Ally! Sorry to hear about your fistula problems, it’s so difficult to deal with isn’t it. But the surgeons will fix you eventually I’m sure! The setons are great because they’re draining all that horrible pus out so that you can be fixed! It’s not good to be on antibiotics for that long either. I’m sure you’ll be back on the horse in no time! Please keep us updated on when you’re going to have surgery again!

  8. What a great site! I have had a fistula for over a year now and have had 7 surgeries, including one LIFT. My LIFT failed, but when I went for a second opinion, the doctor said it may have failed because the infection had never been fully cleaned out. I switched doctors and now have TWO setons trying to help with the draining so that I’ll be healthy enough for a flap surgery in September. Is your fistula high and in the posterior, like mine? Did it start as a horseshoe abscess?

    By the way, I have a blog about fistulas, too: http://fightingmyfistula.wordpress.com/

    Peace and wellness!!!

    • Hi! Thank you! Glad the site is helping you in some way. I’m so sorry to hear your LIFT procedure failed! In New Zealand it’s called the Advancement FLAP surgery. Sounds like your doctor didn’t wait until the infection was completely cleaned out before he did the operation. My surgeon waited 14 months until all my infection had drained out until he did the operation, because otherwise, the infection can grow again and just eat through the LIFT or FLAP.
      I also had two setons draining, and yes mine was very high up, that’s why my surgeon couldn’t just lay them open, as there was too much muscle involved. Mine started off as two abscesses very high up.
      So does your new doctor seem to be better??

      PS – I like your blog!!! :)

  9. Oh no, I feel terribly for you. I was so hopeful that your advancement flap had been successful. Please let us know how the MRI turns out. These fistulas really force our lives to stop, don’t they?

    I’ve had two draining setons since June. So far, so good. My doctor said we could go for the advancement flap procedure whenever I feel ready. It appears as though the infection has cleared, which means I am ready for surgery. I am going to spend the next few months exercising and trying to get my life back. Between a very demanding job and this crazy business, I have gained 20-30 pounds and feel like crap. Aiming for surgery sometime this winter, if I can put up with the setons during exercise.

    You are in my thoughts, my far-flung fistula friend!!! Sending you hope…

  10. So interesting to read about other people in the same position… I have had my fistula for three years. Initially I went to 12 different specialists of varying types because no one could figure out what it was! I have had the advancement flap, the plug, the fibrin glue, the plug and glue together and the advancement flap again! As well as the setons in and out 4 times. All up, in the last 3 years I have had 12 surgeries and a colonoscopy! Everything has failed, and the other day they put new setons in again. I’m finding it very difficult. At one stage I was on metronidazole antibiotics for a year at my surgeons request! I’ve also been put on anti depressants because of it all. It’s just truly awful.

    • Hey Katie… gosh it sounds like you’re having a terrible time, I feel for you!!! And you’re right, it is truly awful!!! I guess the best we can do is adapt to a life where it’s part of life, and try to be happy despite it all. It’s really disconcerting to hear that you went to 12 different specialists and they couldn’t work out what it was!! That’s shocking!!! Do you have Crohns disease??

  11. Thanks for this wonderful website!

    I developed a hard lump in the buttcks in June that was misdiagnosed by my physician as a cyct – most likely because it was not that painful. After a couple of months the lump formed a head and started draining. To make a long story short, I ended up with a complex fistula and have had a draing Seton in for about ten weeks now. I’s awful! Constant pain and drainage of puss from both the external opening and the anus. The internal drainage is the most severe. My colon and rectal surgeon keeps saying that all drainage is good but I am still in pain and the hardness never completely resolved. The doctor also said that there is no sign of active infection and has taken me off antibiotics. My next appointment is in January at which time she plans on scheduling me for plug surgery. Don’t know if my body is ready for the plug but I guess I have to trust the surgeon. The surgeon also said that since the Seton keeps the internal opening open, you will always get some stool in the fistula tract at every BM and that the drainage will not completely stop until the internal defect is fixed.

    This experience has been one of the worst in my life and I hope that Monday I can live a normal life again. My heartfelt sympthomy goes out to anybody suffering with this dreadful condition.

  12. Hello
    I have crohns and was diagnosed with a perianal abscess in September. I had and I and D of the abscess and a mushroom catheter was left in place. My surgeons communication skills are lacking and was never told I would have this drain in for 6 months. I see her again next month and I think she may be planning to do the mucosal advancement flap surgery. I am actually a medical professional but was wondering the pain involved, recovery time, was this an outpatient procedure, how much time off work is needed. Thanks

    AMS

    • Hi AMS, I’m sorry to hear you’re going through this!! And the fact that your surgeon hasn’t explained recovery time etc to you is terrible. You need to ask as many questions as possible. I usually write all the questions down before I see my surgeon and make sure I don’t miss anything because I don’t think their communication skills are the best, no. I guess everyone is different, everyone heals differently. I had the advancement flap surgery, and I took 3 weeks off work. I started to feel normal again after 2 weeks, but I wanted to give my body the best possible chance to heal. I was told that you should lay very still for a couple of weeks to give your advancement flap time to attach and take. The tissue is so fragile in that area, so you need to be very gentle and careful with regards to moving around. After 3 weeks, I went back to work, but was going home as soon as I started feeling tired. The pain was pretty bad for the first week, I had morphine and tramadol which helped… they also made me constipated… but I didn’t mind that, as I didn’t really want to have a bowel movement, it was too painful. After about 3 weeks, everything seemed to start coming right. But like I said, everyone is different! Some people heal very fast, others, it takes longer. Lots of healthy food and nutrients and lots of laying very still, no sudden movements and no lifting for at least 2 weeks!! :)

      • Have you fully healed yet?
        6 months ago i had an abccess drained that was the size of a tennis ball.
        As the abccess healed with antibiotics a fistula formed.
        As long as i soaked everyday, kept the incision open & took antibiotics things were tolerable.
        A couple weeks ago i had to do a lot of physical & sweaty activity due to moving out of my apt to another place.
        A day or so after that weekend my abccess swelled & the sitz baths werent opening it up so i had to poke at it with a needle until i opened it up.
        I was able to get 20 Keflex & it appeared to calm things down in that area.
        In the meantime i noticed horrible pain on my anus that i thought was just a heamorroid.
        Further examination it appeared to be a small hole with pus.
        I was teriffied at this point.
        I saw an infectious disease dr today who admitted me to the hospital for surgery.
        They did a cat scan & proved my problem to be a fistula in ano.
        I saw the pictures & its hard to believe that its inside of me & its whats been causing so much pain and distraction.
        They discharged me to get outpatient surgery.
        I have trouble walking, sitting, driving, bending over, going to the restroom, just daily neccessities… i cant imagine recovery from surgery.
        I have an appt with a surgeon tomorrow morning to go over my cat scan & follow up options…
        I am only 27 yrs old & im in my junior yr of college- i hope to become an architect but this will be the 2nd semester in a row that i will have to extend or drop classes not to mention lower my gpa.
        I have become obsessed with my issue over the past few months.
        I feel as if though im losing my sanity.
        There has to better technology or medication out there to eradicate anal fistulas…like you said i cant imagine living life with chrons- as far as i know i dont have that but new test results in the near future will confirm.
        Is a fistulectomy worth trying? Especially with my fistula not responding with antibiotics.
        I am teriffied about what the surgeon is going to tell me tomorrow.
        I find my self sinking in to sorrow every single night of my life.
        I have good days & bad days & i do have to find things to make me laugh & smile or no doubt i would be crying all day long.
        Any advice would help & thanks for your time

  13. My husband has had a seton put in place a week ago, but needs to go diving (in tropical seas) for his work in about 6 weeks time, when the seton will still be in place. He is concerned about infection occurring, and his doctor can offer no advice . Has anyone had any experience with this or any information. Thanks.

    • Hi Fairlie, I’ve never been diving with a seton, but I can’t imagine you’d get an infection. If anything, salt water is meant to be amazing for healing wounds, so it might do your husband some good! The only thing would be to make sure he doesn’t kick around loads and strain anything. My surgeon told me not to go running because I would strain myself, and hurt the wound. So they same principle would apply I suppose. My surgeon told me that I was fine to go swimming in the ocean, so I think your husband will be fine.
      Pretty shocking that your doctor has no advice to give you.

      • I too say, diving should not harm anything. I have had a drain in for 6 months and just went to Costa Rica and was told I had no restrictions and the salt water would be good for me.

      • Hi, I’m the diver Fairlie was asking about (she’s my wife). I have done 2 long SCUBA trips diving daily for up to 3 weeks (for my work as a fish biologist) with a seton in place just 6 weeks after a partial fistulotomy. Diving not a problem. However, today a sigmoidoscopy and sonogram showed my seton has healed over and another fistula tract has developed next to it with more pus than ever discharging. So back in on Saturday for a “revision of the seton”. We are following a plan of drainage with the seton in the belief it will enable the infected gland to heal itself. Then I will have a LIFT procedure. So more surgeries ahead. The sea is actually pretty “dirty’ as far as bacteria go, but it was the pressure at depth that I was worried about — thinking it may force sea water backwards through the seton tract.

      • Hi Mike, did you ask your surgeon about diving? I don’t think that the pressure would have created another fistula tract. I’d say that was just because the infection was still in there and needed somewhere to go as the other fistula had closed up, hence creating another one?? I had a second fistula form as well, so they took me in and added another seton, so I had two setons in the end. And when they did my FLAP surgery, they made the FLAP big enough to cover both fistula openings.
        I guess you just have to do what you have to do right? Take it day by day. And once you have drained the second fistula as well, I’m sure you’ll be ready for a successful LIFT procedure! :)
        But you should ask your surgeon about diving. And maybe just stop doing it for a while if it’s affecting your healing process. I can’t see how it would be though.

  14. Thanks for the advice, its been most helpful. Costa Rica has similar water/reef conditions to where he will be diving, so its great to know that its do-able, and also thanks for the running info also, as he was about to leap in to things like that . Thanks to you all again, your responses are much appreciated.

  15. I have had Crohn’s disease for about ten years. I had pain after bowel movements early on and told my dr’s but they failed to diagnose it as an abscess. It would come and go and I learned to deal with it. June 2010 I noticed I had a small lump externally on the inside of my cheek so I went to the ER. About a week later I had a general surgeon do a minor opening under anesthesia. It didn’t drain much and continued to abscess. It would feel OK for a couple weeks and then feel horrible for a few weeks until it opened internally and drained. It was like a roller coaster. Last October it hurt so bad I had to go to the ER. A CT clearly showed the fistula tract just below the skin and I was horrified. I was referred to a gen surgeon who didn’t want to do anything until he knew if I was in an active Crohn’s flare up. I went to the gastroenterologist and had blood work done and was symptom free other than the abscess. I never heard back from either the gastroenterologist or the surgeon. Four months later I went to another gastroenterologist and brought a disk with my CT. This was February 22. He had me meet with a surgeon that day and later that same day I was in surgery. I was relieved that I was finally getting help for this ongoing issue. I was told that since it hadn’t broken through the skin externally they would just open it internally and let it drain. When I woke from surgery I was told that the abscess was extensive and that since it was so close to the skin he had to open it and put in a seton. It has been a month and I still have pain. I have a little drainage externally and internally. It is still very hard around the seton and is very uncomfortable. It is in a spot that causes a lot of chafing and certain movement seem to pull on the seton so I have been very inactive. I haven’t been working at all and don’t know when I will be able to return. I don’t have any idea how long I will have the seton or where my treatment goes from here. I have appointments with my surgeon and my gastro dr tomorrow and hope to get these questions answered. I feel I am tougher than most when it comes to pain but mentally I feel I am beginning to lose my strength. Reading others stories here has only made it worse because I don’t see any happy endings.

    • Hi Jaremy…. don’t get disheartened by reading other people stories. It’s good to know that there are other people living with it as well, and that you’re not alone. Plus…. think about it…. if you had a happy ending… you’re not likely to be on a support website right?? You’re probably more likely to just get on with your life and forget it ever happened, not look for support sites to write on. I know for a fact that most people recover from fistulas, and never have to deal with it again. My surgeons told me that.
      I have not had a seton for a year now. Yes, I’ve had pain and am having another MRI to make sure there is no fistula forming again. But, my advancement flap surgery was successful, and I haven’t had a seton for a year.
      You WILL get better. You just have to go with it, and take it one day at a time.
      There’s no reason why you can’t go to work and be slightly active. I know there’s pain, and it’s uncomfortable, but you’ll just learn to cope with it and get on with life. That’s all you can do. I worked throughout the 2 years that I had TWO setons in. I had a donut pillow on my chair at work, and just got on with it.
      Your fistula doesn’t sound as bad as some other stories I’ve heard, you’ll be fine :)
      Make sure you write a list of all the questions you want to ask your surgeon, and don’t leave until you have everything answered properly!! Sometimes they leave you wondering what is going on, and that’s not fair.
      You’ll have the seton in for as long as it takes for the tissue and infection to settle down. That could be 6 weeks, could be a few months. They’ll just have to keep monitoring you.
      Keep your chin up, it’ll get better!!!! :)

  16. I have been dealing with a fistula since 2010. At first I thought it was a cyst and visited ample ER’s and been sliced and poked on numerous occasions to find out from my primary care that is not a cyst, at all. I believe the sugeons(ER) should be more aware of this diagnosis bc a fistula is so identifiable. It is right near the (_I_) hole..Cant miss it and for those who have never had this, have NO idea what the word PAIN is…It started with the plug-HORRIBLE bc of the of the puss trying to escape to find a way out-not good. second surgery, I was introduced to the devils string…the seton (or SATAN) I am not lying when I am telling you to ask for the STRONGEST narcotic that is offered bc you are still going to feel the pain. Weekly tightenings of the seton string made me realise that u must never delay this process to avoid going through it again. i would have rathered gave up my left butt cheek than deal with the seton…and replaced it with a rubber one..bc my wife would have loved me anyway. The smell from it would make oscar the grouch not feel at home! I asked why me..and he said BL (bad luck) damn…there has to be reason, I missed a year of work, a beautiful summer. Im broke, medical bills, wife threaning to leave, tired of taking care of my a** literally..damn you fistula!! IM GONNA beat u 1 way or another! 4 those who r facing this unbelievable procedure, im sorry bc no one would ever understand what it feels like and thank goodness there is this board to share my feelings about this topic …keep strong. dont let it beat u and I wish I could say I am FISTULA free but I got an appointment the 11th to check…i hope my mind is playing tricks on me and i dont have to face another procedure. By the way, the sitz bath is the way to go and for those suggesting exercise, I am assuming you dont have staircases to go down bc I could barely get my leg into the car for my weekly visits…so I layed on the side with the fistula laying down so it dripped a lot easier. I should probably stop now, thinking back at all the suffering and say this, I dont know if this is helping this support group or a story to share with those who doubt the amount of time your out of work fighting this AWFUL AWFUL demon.

    • Hey Rey… Really like what you’ve written!! The frustration comes across so well!! I totally agree with you regarding the doctors in ER or A&E (as we call it in New Zealand)…or even just your GP, or personal doctor. They seem to have no clue when it comes to fistulas! I was misdiagnosed 4 times. They all thought I had a boil! And kept putting me on different antibiotics. And I often wonder – if they’d realised what it was earlier, maybe I wouldn’t have got so sick.
      So let us know how your appointment goes on the 11th!!! I have my fingers and toes crossed for you that you have beaten it. If you’re still feeling pain, it could be just healing still…..good luck!!! You will absolutely beat it one way or another :)
      And you’re still alive, that’s the main thing right!!! :)

  17. I just wanted to give an update. My surgeon says that after the fistula heals around the seton I will have a lift surgery. He explained that he will surgically cut down in between the ano-rectal muscles to stitch behind them closing the fistula. He says it is a newer procedure that few hospitals do and they have been having success. At my visit he looked at my seton and couldn’t believe how tight it was because he left it loose in the OR. I had so much inflammation and swelling it was very taught. He said my tract widens in the middle and it will take some time to scar over. He put me on Flagl too.
    Now the good news, the Flagl and healing process must be working because within a couple days it began to feel better. Every day it has felt better. Now 12 days later I hardly even notice the seton is there. I only have discomfort after bowel movements. I even think I could live with it forever if I had too. I still have a little drainage but it it is very little.
    The next surgery is only 70% effective so I am praying for the best.

    Rey, i hope and pray you are fistula free!

    • Hey Jaremy! So happy to hear that you are feeling better!!!! I had FLAP surgery…. I think that may be the same as the LIFT procedure?? I guess they call it different names in different countries. I do know that it has a much higher chance of working if everything has healed a lot, and you have very little drainage…. so I think you have a great chance of success!
      Keep us updated with when you are having your surgery, and how it all went. Good luck to you!! Keep thinking positively!! :)

  18. I think Wikipedia has everything. Here is some info on the lift procedure…

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

  19. I think a flap is different and they cut a piece of tissue that they fold down and use as a flap to cover the entrance hole. Correct me if I am wrong. A lift is done all externally and the surgeon locates the space between the sphincter muslces and cuts between them until the fistula tract is found. The the tract is sewn shut between the muscles closing the tract. Since I have Crohns the surgeon said he doesnt want to mess with the inner lining of my rectum and this is all done from the outside. Here is a very graphic video of the surgery… http://www.youtube.com/watch?v=zHSYutaulK4

  20. Where are you? I’m sorry, but your doctors sound completely incompetent. This should never have happened! Any doctor who cannot tell the difference between a cyst, an abscess and a fistula is a quack. You should have been immediately referred to a gastroenterologist. If I were you I would travel to a university-affilitated hospital clinic and get a second opinion on the Crohn’s diagnosis. FYI: IBS (Irritable Bowel Syndrome) does NOT cause fistulae or symptoms of this kind and is a minor condition with variable symptoms. I think you must have been IBD (Inflammatory Bowel Disease).

    • Hi Jane, thanks for your reply, you sound like you know what you’re talking about! Unfortunately, there seems to be a lot of people on this website that have been misdiagnosed. I was told I had a boil!! It was actually two abscesses!! It’s terrible, but seems to be happening a lot. I think there needs to be more education amoung doctors about fistulas, as many of them seem to have little knowledge of the subject.

  21. After reading all of the problems you poor people have I feel much better in myself after having only three operations and am in very little pain after having a seton fitted 2 months ago in a clinic specialising in fistulas. I have minor discomfort and have to wash the wound out at least 4 times a day and especially after a bowel movement. My surgeon assurred me that after the open wound is healed up I will have to have another operation but what he exactly intends to do is still quite vague as he said I should take things one step at a time. After two unsuccessful operations over a period of 16 months at a general hospital I am now more confident of a complete healing process in a specialised clinic. Keep hanging in there as we will battle through this illness, good luck to you all.

    • Hi Patrick, that’s great that you are being treated in a clinic specialising in fistulas! I can imagine that it would cost a lot more though right? I thought about going to a private clinic – as opposed to a general/public hospital… and I looked at that as an option, but found that many of the surgeons were working in both! And the private clinic would have cost me a lot of money, which I didn’t have. It sounds like you had a bad experience in the general hopspital – and I’m really glad that someone specialised is now sorting your health out!! It’s so difficult to find good doctors/surgeons!! Thanks for sharing your story, and Good luck to you too :)

  22. Wow. Finally someone who understands what a saga this can be!
    I had a perianal abscess drained in December 2010, and flap surgery in February 2011 to repair a fistula. I developed an infection and the flap had lifted so I had corrective surgery in March 2011. Months of pain, infection and surgeries including a sphincterotomy later and I had developed very painful fissures. In October 2011 my doctor gave me Botox injections to try and aid in the healing of the fissures and it worked for a few months.
    Recently I have had a lot of pain and some bleeding after BM, and now I have shooting pains where the original abscess and fistula were.
    I’m scared to go back to my doctor because the last time I saw him to discuss the pain he suggested a psychologist and anti-depressants! He seems to think he has “fixed” me and anything I’m experiencing now is in my head.
    Thank you for your blog – I will now go and get a second opinion.

    • Amy – oh my goodness!!!!! I can’t believe your doctor suggested anti-depressants!! That’s shocking. He obviously hasn’t fixed you if you’re still having pain!! I have shooting pains where my original absesses and fistulas were too – I was told that it was the nerve endings mending…. perhpas that’s the same for you. I hope so. Please do go and get a second opinion!!! Sounds like he doesn’t know what to do next!!! If you’re in Auckland, New Zealand, I can give you the name of a really good surgeon to go and get a second opinion from. I would go see someone else ASAP, and let us all know how you get on, good luck :)

      • Hi I had a fistulotomy in may 2011 and still have burning pain someday but my doctors tells me he sees nothing wrong. I had the flap surgery, could this be nerves mending and if it is what can be done for that!

      • I had the advancement flap surgery in February 2011, and I still have shooting pains and dull aches. It takes a really long time for the nerve endings to repair and all the tissue to go back to normal. Just takes time, that’s all. And heal yourself the same way you would with anything else – healthy food, exercise, lots of water. (no smoking). It’s hard not to be paranoid that something is wrong again. And making sure you don’t have an infection there is the main thing. I got infections after flap surgery and had to take a course of antibiotics to clear it up, and then I was fine again. So I guess you need to start to manage what type of pain it is you’re feeling. I got very good at knowing whether it was nerve ending repair pain or infection pain. And obviously you will know if you have an infection because you’ll feel generally unwell.

  23. I developed an abcess about 8 years had surgery to remove it and had it packed, everything seemed fine until christmas day (of all days) when i knew I had developed another. I went to the emergency doctor and they wanted me to go straight to hospital, I refused as my young children were at home being looked after by my in laws, I promised I would go if it got any worse and was prescribed antibiotics anyway it burst a few hours later so I carried on with the antibiotics and didn’t have any more problems.

    That is unil February last year, I had a tingling feeling I knew exactly what it was!!! I went to the doctors and they gave me 2 choices, A & E or antibiotics, I chose the antibiotics but went straight to A & E the day after as it wasn’t getting any better. I was admited for surgery kept in for 2 days then sent home like before and had to have it packed daily by the district nurse. I had to have an mri scan in the March then didn’t hear anything else from the hospital. I went to my own gp to see if they had heard anything which they hadn’t!!! She sent a letter to the hospital requesting my results still nothing, by this time I had healed and was back to work and feeling fine until September I had booked a holiday with my friend and 2 weeks before I developed another abcess so I went back to my doctors during which time the abcess had burst again she gave me antibiotics and vowed she would chase up my mri results. she phoned me the next day to say she had finally got them and that I had a fistula. I ended up with another course of antibiotics the week after as they just kept coming back and bursting, i went of on holiday same happened there but I just kept getting in the sea water which worked a treat!!

    My doctor referred me back to the hospital took until December to get an appointment, I was told that I definately had a fistula and they would have to investigate more under anaesthetic and they will decide what they were going to do, I was told it would be in the next 3 months as there is no rush!!! Even though I was still getting the abcesses they were bursting but they had been making me feel quite unwell. Anyway finally got my appointment last wednesday, when the doctor asked me if I understood what was going to happen I said no so he briefly explained the options of laying open the fistula and the seton drain. I told him I wasn’t prepared for them doing the procedure and had only booked 2 days of work would I need longer he told me I would be back at work in a few days.

    I came out of theatre and i was taken back to the ward the doctor arrived and told the nurse I had a seton in and I was ok to go home later if I was well enough. He then told me he would see me in 6 weeks. He went and the nurse said she was going to check everything was ok and said well its bright red, I was wondering what she was going on about then she explained to me what it was. When she went out of the room I had to look what she was talking about and was quite shocked what it was I wasn’t prepared for it at all. I was dying to go home I knew the drill I had some food a drink and Id been to the toilet and was feeling surprisingly well (it was definately what ever pain killers they gave me hehe) The nurse said I could go home. I asked her what would happen with this thing dangling from my backside and what about when I had a bowel movement, she told me that the drain would fall out on its own and I was sent on my way with a sick note for 2 weeks (not a few days like the doctor told me)!!!!

    When I got home and settled I grabbed a mirror to look properly what they had done I couldn’t believe it. I just thought to myself how the hell is that going to fall out when its tied??? The next day I started researching seton drains on the internet I can’t believe I wasn’t given any info whilst in the hospital it was then that I learned this red thing is going nowehere till they take it out!!! I wasn’t given any after care instructions (common sense to keep clean) but I just feel as though they have operated and sent me home to get on with it!! I’ve been in agony I can’t do much at the moment I’ve been stuck in bed most of the week. I’m moving about a lot more but it only lasts about 10 mins and I need to get back in bed.

    I went to my doctor today to see if she could give me some advice, I wasn’t given a discharge letter from the hospital she hadn’t received anything from them either. I explained everything to her burst into tears whilst doing so, she told me straight away she didn’t know about seton drains I told her I was worried about when I have a bowel movement as the seton moves what if there is faeces moving through the fistula surely that would cause more infection. She had a look and said it didnt look infected and then got on the phone to my consultants secretary, she didn’t get any answers from her and was transferred to the ward I had been on to be told that they couldn’t tell her much as my notes weren’t with them any more!! when she told me this my reply was “well if you can’t get any info what hope have I got” She then asked her receptionist to send an urgent fax to the district nurse as they would usually deal with post operative care.

    When I got home the nurse phoned and told me that usually they would be contacted for follow up care for a seton drain but they can’t fit me in untill friday. I think today is the day it’s sunk in properly that I’m not likely to get over this in a few weeks. Not a good day today I’m just so glad I’ve come across this site after reading the stories knowing i’m not the only one out there thats going through this because until today that’s how I’ve felt.

    • Hi Lynn, it sounds like you’ve had a long frustrating ordeal as well!! There needs to be more education amoung GPs about fistulas and setons etc – none of them seem to know anything about it all! And it’s terrible that they don’t give you all the information you need before you leave hospital!! I remember having a look at my bottom with a mirror after getting my first seton put in, and I was shocked too. Gives you a massive fright doesn’t it! But it’s there to help you, and the seton is what will keep everything open to clear your infection so you can have surgery to fix the problem. Mine was bright orange with black ties on it!! The district nurses are pretty good at giving you information, so when she comes over to see you, make sure you ask lots of questions. You’ll have the seton in for 6 weeks or more – depending on how long it takes for the infection to calm down. With some people they tighten the fistula every couple of weeks, making the loop smaller and smaller until it eventually comes out of your body. Perhaps they’ll do that with you. Don’t worry, you’ll get used to living with the seton, and you’ll learn to adjust to having it there when you have a bowel movement. It’s just a step you have to take to get better, take it one day at a time, and try not to worry yourself, I know it’s hard, but you’ll get there in the end. Keep asking them questions, demand answers! :)

  24. Hi….

    I came across your site by chance. I thought I was a lone sufferer. I have lived with the same problem for over 16 years… still not sorted. I am British and now live in Portugal. Hospitals here seem to be more friendly than the UK but hospitals do not have great financial resources. I have had so many operations that I have lost count… always via ambulance as when things got bad I cannot walk. I live with this hole in my bottom cheek now… it costs me and my wife a small fortune in pads and such like. My surgeon says he may not be able to fix the problem…. so I tolerate it and the pain… pretty constant pain for over 16 years with a few respites now and again. I fear operations now as I am worried they may make me worse… no bowel control or suchlike… so I put them off.

    I will follow your site more closely… keep smiling… life goes on.

    Robert

  25. Yes, my docs in town say to me “what is a seton?”. I had to go to Los Angeles to get my seton placement. Called the doc today to let her know that my seton fell out after almost 2 years and she said that happens sometimes. She said as long as I feel good and have no pain I should be okay. She said if I start to feel any pain or anything to call her. I have my fingers crossed!! And I am going to take it easy for a while too just in case. But right now, I am celebrating!!!

  26. Great website! In March of 2011, I had a ruptured anal abscess that developed necrotising fasciitis when I was almost 7 months pregnant… After multiple surgeries to debrisd the infection I had a large wound in my perineum. Once that wound healed (July 2011), the fistula exit in my perineum became visible. I had a seton placed, then advanced flap surgery… When the flap failed, I had another seton placed. The later seton was able to heal the fistula on its own and it fell out… Now I have what looks similar to a cleft palate but it’s my anus/sphincter/perineum… Has anyone had surgery to repair the damage done by a seton? It looks god awful down… Almost as if Freddy Krueger slashed my bum!

    • You’re not alone! Oh my God, I felt like like I was the only one without a “cleft” downstairs. Really, that was the perfect word to describe the surgical site(s) near my vaginal/anal area. Thank you for taking the words from my mouth! Good luck with your fistula :)

  27. I’ve been dealing off and on with an anal fistula for almost 10 years now and it really seems like there is no end to this problem. I read maybe half of this page that I was directed to from google search. I totally understand the frustration that comes with this affliction. Once the pain subsides from either a platy sugery or the I&D of abscess, I just think will this ever end.

    My surgeon told me that the majority of the time, an anal fistula requires multiple procedures, even into the double digits.

    A fistula isn’t a terminal affliction and is very hard to describe to those outside the medical field. Therefore, it’s just this “thing” to deal with that is incredibly painful and no else has it, nor understands it. But it hurts, it affects my life greatly, hinders me, yet I feel like no one understands.

    I’m so happy I came upon this site. Seems like someone else understands the extreme frustration and had the motivation to put out their feelings on the internet. I’m very grateful for that. I felt so alone and kind of weird having an “anal” medical issue.

    • Sometimes I feel like because I’m not dying from this (it’s a chronic affliction, not terminal), it’s not a huge concern. The general public does not understand the chronic pain that comes from recurring abscesses and multiple anal surgeries.

      • Hey Amanda! Yes I agree that the public doesn’t understand… but it’s probably more to do with the fact that no one talks about it, because it’s embarrassing… so most of the time, people have never heard of it before!! And it seems to be a common thing that a lot of doctors are also very unaware! Hence all these poor people getting misdiagnosed. It’s a difficult thing to talk about I guess :)

  28. I have had a fistulomy done about a year ago after a perianal abscess was drained and left behind a track. I have since fully healed and have had MRI and endoanal ultrasound performed to check for any lingering infections. Nothing has been found but i have been left with this lingering pain where the fistula was removed. Maybe its scar tissue? Has anyone else been left with some sort of chronic pain after surgery?

    • Hi Allan, I am in exactly the same boat as you. I had an MRI a couple of weeks ago after being on antibiotics 3 times in the past 4 months with an infection/lingering pain/fevers etc. The MRI came up with nothing. And the antibiotics seemed to ‘clear it up’… whatever it was!! I asked my surgeon and he said that there were two possibilities – One was Scar Tissue, apparently this can hurt for quite some time. And if you feel shooting pains, it’s the nerve endings healing. He said that I could have had an infection IN the scar tissue, but that it’s gone away with antibiotics. And the other possibility was that the anal glands around the area were flaring up.
      I think that if you have lingering pain, and the MRI has shown nothing sinister – then it must be scar tissue pain that you’re feeling. And I’ve heard it can take up to a year to stop!!!

  29. Hi, my name is Mike C and I’m glad this forum can inform me of others’ experiences, although I’m a little daunted at how long people have been suffering.
    It seems my fate is to have problems in the perinanal area. I am renowned for flatulence in my family, and have had numerous haemorrhoids. Once I had an accident where I fell off a ledge into dense pasture grass and landed on a star picket. Luckily I was not impaled, but I did get a perianal wound, and an almost paranoid attitude to my nether regions.
    I live in far north Queensland and about 10 years ago noticed a pea-sized tender lump in my perianal area that persisted for weeks during which I made digital explorations to investigate and pinpoint its location. Being a silly male I lost patience and gave it a great big squeeze whilst showering, thinking it would burst like any other pustule . Unfortunately no result, and I was about to drive 6 hours north to a remote location for work. The pain got worse and I ignored it as we drove. To make it worse, we decided to cope with a delay by spending a whole afternoon trekking to the mouth of the Daintree River…climbing over logs and generally giving grief to the growing lump. That night I could not sleep and within days I was both sleepless and feverish, as the lump grew and grew, but unable to see a GP for 4 days. On day 3 it burst whilst I was on the phone in the office and immediately soaked right through my clothing to stain a hand-sized area on the chair fabric. Most embarrassing. But, oohhhh the relief!!! I had to sit on a folded newspaper in the commuter vehicle and try to hide my shame as a bloody, serum-like pus drained and drained. The GP told me I had a perianal abscess and prescribed antibiotics, but the subdsiding lump never really went away and over the years became tender and painful or not, varying on no discernible cycle. {NO squeezing indulged in}. Then at the end of nearly a month at sea diving daily or bouncing on my backside in a diving tender the pain and swelling told me to see a GP. Just as I was going on long-awaited leave to do some heavy renovating work installing big beams in the crawl space underr a deck, she put me on antibiotics and told me to “hope it burst and drained, because that is best”.
    I prepared myself with painkillers, lignocaine ointment and antibiotics and spent the next 2 weeks camping in a tractor shed having bucket washes whilst manually digging postholes, concreting and installing the beams — all from a squatting position undert the deck. The abscess burst and I was unperturbed {the lignocaine ointment was soothing at night}. The infection seemed to subside, but within a month was back with painful swelling interspersed with pus draining from the external tract opening.
    This time my GP examined it and referred me a local colorectal surgeon. So after 5 months of “abscess activity” the surgeon diagnosed the bad news of a transsphincteral fistula-in-ano, and I was looking forward to (yes, I was!) a “partial fistulotomy with seton”. I doi not want to be the “butt” of my worklmates jokes, but I sent afew the YouTube LIFT vidoe from Chulalongkorn University and that seemed to encourage some better treatment of my request for 2 weeks sick leave.
    Being a healthy 52 year old with very good recovery from all sorts of injuries, accidents and surgeries, I was expecting a recovery within weeks from the seton insertion, a quick cessation of pus drainage and a quick resolution towards the final LIFT procedure.
    The first3 weeks after surgery were painful, but the scratchiness of the seton tails faded, or was fixed by a discrete bum scratch. Long periods of walking often spread pus to the outer buttocks and caused chafe burns, but this was quickly fixed with Kenacomb ointment. At every opportunity (even at work in the office) I had a hot shower after bowel motions. I was not allowed to ride my pushbike, but soon was back into digging, canoeing, landscaping with rocks diving and fishing.,,, but the pus discharge did not stop, and sometimes I felt “sick”.
    Well, I was misguided and the surgeon’s warnings have all come to pass. It is a complicated procedure and will be (for me) a long-term complaint. My last appointment suggested the seton had healed over and was not working, and today a sigmoidoscopy/sonogram has shown I will need a “revision of the seton” with movement to another location. I am curious to see what my perianal region actually looks like now. There seems to be fissures and flaps I can feel, on top of a hard lump. In my mind’s eye it is like the egg capsules in “Alien” movies which have lips that open outward.
    So more surgery for me, and still no healing of the source of all thuis misery. If I do have a message for others, it is to request more than just antibiotocs from your GP for an abscess (early attention by a colorectal surgeon might avoid later problems) and to believe you can do many/most of your normal activities while wearing a seton.

  30. developed a small bump on my butt that hurt in April of 2011. I was going on vacation so the morning before I left I went to urgent care as I could not get an appt with my primary care Dr. The Dr. at urgent care said the bump was a hemmoroid, now I have had hemmor

    oids since my daughter was born and I know they come on the outside or inside your anus. This bump was about an inch from my anus and hurt like the dickens. He gave me pain pills and I left for my trip which was in France. Well I guess from the long plane ride, by the time I got to the hotel the thing had burst and blood and puss were draining out. I found a pharmacy in the small town we were in and he gave me small ointment that kils bacteria. I used this and continued on the pain pills for tje next 3 weeks we were there. Had constant draining also.
    When I returned home, I went to my primary care Dr. Who sent me to a Colorectal surgeon who said it was a fistula and told me I would need surgery. He told me to come back, but I did not care for him and did not go back. Plus I was no longer having problems with the drainage or pain. Well, the end of June I started having pain again and ( I should mention I had been seeing a Gastro Dr. Since they were thinking from previous tests I had UC. I had been on sulfasalazine, asacol and mesalamine all of them causes me to have an allergic reaction. I was also having blood and muscus on my stools. I was put on prednisone to control the bleeding and muscus. I ended up in the hospital for a week and the Gastro Dr put me on high doses of prednisone thru IV. He also did a colonoscopy and said after that I had Crohns but came back on friday and said tests did not show Crohns but a combination of UC ansd Crohns. After leaving hospital I was put on lower doses of Pred. My problems continued and Gastro Dr. said he really did not know what the problem was and refered.me.to a specialist at Mayo.)
    In the meantime at the end od June is when my butt started to really hurt after a week of pain the pain became unbearable so I went.to.emergency room. They did CAT scan which showed a fistula. They sent me to a wonderful Colorectal surgeon. He lanced the abscess. A lot of pus and blood came out and I felt instant relief. He said he would have to put a seton in so the hole woule stay open and drain. That was done July 2011. In August I went to see the Gastro specialist at Mayo. He said colon looked good no signs of Crohns or UC but it could be because I had been on Pred. He started lowering my dose of Pred so I was off all meds in Oct 2011.
    My Colorectal surgeon said it was time to take seton out and do flap surgery. That was done Feb 2012. In April went back to the Gastro specialist becayse I was having muscus and blood and 5-10 bms a day. Colonoscopy was done and he said no sign of Crohns. Yet my Arthritis Dr said from her bloodwork I have what they call Crohns Arthritis.
    In meantime went back for checkup with Colorectal surgeon and he said flap surgery had not healed. He would have to do fistulomecty.
    I need more info on the fistulomecty from people who have actually had the surgery. Pain healing time etc. Dr said it’s more painful than flap surgery. 6 weeks to heal.

    Also why can’t they figure out if it’sCrohns or not? One Dr says yes another says no. My joints and back hurt everywhere since i have been off Pred.

  31. Hi there, great site and great to see I am not alone with this crappy hindrance to my life! I have currently since 2010 had 2 major surgeries, the first one was just over 2 years ago and involved them carving out an obscene chunk of flesh next to my bumholio and a lot of weeks of a poor nurse packing said area! And just 6 weeks ago they operated on a second fistula, this time the surgery was done internally so no packing, the surgeon kindly told me what he did the minute I woke up from anaesthetic, so obviously I now don’t remember a thing of what he told me, I was then suitably ejected and sent home a few hours later to suck on tramadol and pass blood every day until the procedure healed, to date there is no more blood but I work in an office and the sitting down all day seems to compact the wound area and generally give me pain and fell sick with it, when will it end!???
    So apart from the 2 surgeries and the 6 drain procedures to clear the access before the surgeon could even get in there I am hoping this is the last time.
    I would love to hear of anything you all find helps with recovery, probiotics, diet, seawater! etc…
    Good luck to you all, here’s to pain free bums!
    Leigh M.

  32. Hi there,

    I had an abcess drained in May 11 and from that had a couple of Fistula’s form, one into my sphincter and the other one into my prostate. After being in pain and having so much discharge for 8 months my specialist decided to insert a seton. After the seton was inserted I thought that my problem would be solved soon, but that was not the case. 4 hospital visits later I had a laproscopic specialist take over and he inserted a seton to drain in a different spot because the collection point was below the original drain. He actually cut a new hole into my lower cheek so that it could drain completely.
    My gastro specialist, meanwhile, had suggested I start remicade treatment as I have been diagnosed with Crohns. He said Remicade was an excellent treatment for not only Crohns, but “Fistulating Crohns”. Let me tell you something…Remicade has GIVEN ME MY LIFE BACK! I had my doubts, but also had high hopes. I can now sit on any surface without the need of a cushion or donut pillow. I can walk for over 100m without pain, in fact I can walk as far as I want. I am contemplating re-starting my weekend sport involvement in the next few months, something I hadn’t dreamed on doing…ever!
    I was so depressed, even suicidal (could have been the pain-killers I was on, Digesic – which is now banned). I could never see that there would be an end to this and thought that I would be in pain forever. I would read everyone else’s posts here and on other pages and be disheartened and wish that there was some magical cure out there.
    Remicade may not work for everyone, and of course, there are side-affects. But this treatment has helped me in leaps and bounds! In Australia treatment is $2700 per visit, but it is all subsidised by MediCare so I don’t pay a cent and my Private Health fund doesn’t even come into play.
    If you get a chance, please see http://www.remicade.com or speak with your Specialist. I am having my 3rd starter treatment in about 1 hour from now and I can’t wait.
    I just want to share this with you all, in the event that this can be the silver lining :)

  33. I am a 55-year-old woman in South Africa who has been through some of what you have experienced with abcesses and fistulas. I am in my 10th month with setons draining a fistula. Prior to that I went through hell, starting with a peri-anal abcess the size of a tennis ball. Yes, I was also misdiagnosed and mistreated and misinformed. I work in a medical practice and I think surgeons are reluctant to discuss possible complications, preferring to allow the patient to hope for the best. For those of you who have setons which tie outside the body in the rectal area, I have found that the best way to minimise discomfort from the setons is to wrap a piece of cotton gauze (100 x 100mm) carefully around the setons to stop them from chafing the nearby skin. When I had to wear pads, I also found them comforting because they would absorb moisture which might otherwise cause infection. The saddest part of my fistula journey which I am almost reluctant to share is that some people have made me feel like a leper because I have a fistula. It is certainly not a condition that can be passed on to anyone, but it is not something I can discuss with others so I feel very alone with it. Coming across this website has helped me a lot and I thank all those who have written their stories here – I now know that I am not alone, because you have all travelled your own paths on this journey. I am with you all the way, wishing you patience, strength and recovery :-)
    Diana

    • Hi Diana! Thanks for sharing your story! It sounds very similar to mine :) I did the cotton gauze thing too and it made such a massive difference! Sorry to hear that some people have made you feel like a leper – that’s ignorance for you. And if they had any idea of how awful this ‘problem’ is to go through, I’m sure they would think twice. Has your surgeon given you any indication of what type of surgery you will have next? I hope this is nearly over for you, keep strong…. one day at a time huh! :)

  34. Thanks for your kind words. My surgeon has given me the impression that the fistula can heal using the seton procedure but it can take a very long time. I have got to the stage where I just get through one day at a time and pray that the fistula will eventually heal. I am thankful that this procedure was invented (apparently Hippocrates was one of the first physicians to use it!). It is easier to live with than the daily wound care which I needed to have after the abcess drainage and the fistulectomy. I was very blessed to have the most wonderful nurses doing my wound care and I trust my current surgeon as he is one of the most skilled and experienced surgeons in the country. The whole experience has not made me stronger but it has made me more understanding and compassionate, especially towards those who are suffering any kind of mental or physical challenge. To all fellow fistula and abcess patients, I wish you recovery :-)

  35. Hi :) I’ve just read about your fistula problem. I was born with one. Also I suffer with IBS-C. I was wincing for you, while I read about the more painful goings on. We might aswell be given gas and air, as the pain is such a burden. Unfortunately, people seem to overlook it, when I find myself having to explain my monthly “bathroom procedure”. I just cope with it in the way I’ve always coped. We all have different methods pf coping with it. Sleeping can help. I’ve had to simply not eat at all, on many occasions. I find food just puts more pressure on the abdomen, which just adds to our already severe pain. Try laying down in strange angles. It can help the spine align itself, which helps relieve anal pain. Hun, i hope with all my heart that you are soon spared anymore of this debilitating horror. I can’t describe enough to people how bad it really stings. There are days where i just need to be left alone to lay down, when it gets real bad. You’ll know what i mean by that. lol. I pray you heal soon :)

    • Hi Sarah. Thanks for your support and prayers. Knowing that there are people like you who understand what we have to go through is a great help. I think that even the surgeons don’t understand the complexities of having a fistula and how it affects your lifestyle and your mind unless they have had one themselves. Everyone has different challenges in life and I would never have dreamed that having a fistula would be on my “life plan”. my biggest challenge now is trying to deal with the loneliness that has resulted from having a condition that people don’t want to know about. At the same time, I make a valuable contribution to my job as a medical receptionist because patients with embarrassing conditions can sense that I am the most supportive person they can share their pain with. Out of suffering there is always some kind of redemption I guess? Take care, Sarah :-)

    • Hi, has anyone had a flap repair done, only, this procedure did not work… Now I’m told I need to have a colostomy so my bowels can rest… I have a rectorvaginal fistula
      Rose r.dicillo5877@rogers.com

  36. Hi all for some reason my comments aren’t posting :( user error I’d say!

    Anyhow, an update.. So I had my seton removed and flap advancement surgery completed 7 days ago. All going ok on the recovery until tonight when my BM was un-formed and resulted in some fecal matter passing through the “wound” part where the fistula is/was.
    Freaked me out completely and due to the time of night it happened I had nobody to call etc. have to wait until tomorrow AM to call the CRS to confirm wtf this means…

    In the hope that somebody out there ha had this occur… Well not that someone else has this crap but you know what I mean… Any advice/help etc would be so welcome.

    I’m in minimal pain… Hardly require any medication however the discomfort factor is highest pre and post BM and I now feel paranoid that the most painful times feels like when I first had the fistula in place… Basically freaked out.

    Please can someone lemme know the score?

    Cheers!
    M

    • Hi M, Just to let you know first of all, I have to approve all the comments that people put on this site, before they go live – there’s loads of spam and people trying to post dodgy stuff, so that’s why your post may not show up straight away… I approve comments every day though :)
      So that’s great news that you’ve had your advancement flap surgery. I had it last year. They gave me Movicol sachets as well. Do you have a district nurse coming out to see you every couple of days??? They should have assigned you someone. And if you have any problems like this, they should come out to see you.
      I wouldn’t panic. After I had my advancement flap surgery, the wound had started closing over, and I had a BM and the wound exploded open and it looked like there was fecal matter passing out the wound. It turned out to be ok. And my flap has healed.
      At the moment, you’ll have disolvable stitches around the flap. I was told to stay as still as possible for the first couple of weeks, so as to give the flap a chance to ‘stick’. No sudden movements, just loads of rest. I wasn’t too fussed about being constipated to be honest, as I thought it would give the flap a chance to ‘stick’ by not having anything move over it for a few days. Some surgeons in Australia actually give you a bag for 6 weeks after getting an advancement flap, so that you are not passing anything past it at all.
      Remember that it’s going to feel like you still have a fistula there, because you do – that hasn’t healed up yet. Once the flap heals over, then the fistula will start healing up inside, and the wound will close over. You’ll then probably have an MRI further down the track to see if the fistula has completely healed up inside, and the flap as ‘taken’ and ‘stuck’.
      The best thing you can do is rest and drink loads of water.
      I know how freaky it is, and how paranoid it makes you, because all you want is for the surgery to work, so you can get back to normal again. You’ve just got to take it one day at a time. And keep in contact with a district nurse or doctor that can come and see you.
      Have you got any answers about the BM you had coming through the wound today??

      • Hi there, thanks so much for your prompt message back! I’ve been having a bit of an up and down morning. :)

        Your response is a definite up part :)

        Honestly a c-bag would be the best option to avoid this kind of issue eh? My first BM post surgery was about 3 days later and it was REALLY nasty (eek) hard/painful and not much fun.

        I’m hoping that this is ok and that the draining going on removes any risk of infection, etc…

        I honestly think it is worse at night when you have no avenues for support/info.

        Don’t have a district nurse – went through private hospital and am in Australia so maybe w edo things differently. The medical receptionist at the surgeons is actually a god send and has talked me through some of the other bits and peices.

        Just a second ago had the call with the surgeon and he indicated that he’s a little concerned about it but would like to see how things progress. the fact that i’m not in any pain is a positive sign however the fecal matter passing is a worry. he wants to leave it for another 24hrs so that the runny poos can sort themselves out and to then re-assess. So more waiting..which is ok i guess but I just hate not knowing difinitively one way or the other…:)

        Again though – this message board is literally the best source of info I have found out there and i’ve looked pretty hard!

        BTW:

        I have a few good tricks I’ve learnt that i’ll share that maybe will help others or be of benefit :)

        1. Run your sitz bath while you’re on the loo so you can jump straight in. Saves time/effort if you don’t have a portable unit
        2. Get a good book to read whilst in the bath.. or get your iphone/pad nearby to try and make the most of the down time.
        3. Sounds crazy, but i found it hard to ‘dry’ the area well after a bath so i’d grab my wife’s hairdryer and give myself a warm air drying… so much more comfy :)
        4. You can get some 20x10cm wound pads and i find if i cut them into 3 they last better.. they are about $3/each and they are the cheapest i could find. I go through 1 full pad a day (3 cut-ups) . I don’t tape them down i just fold and wedge them in and they hold pretty well and a lot easier to switch.

        Well, thats all for me for now. Til tomorrow I guess.

        Cheers,
        M :)

      • Hey M, I’m really glad you’ve got to talk to your surgeon today! You’d think that if you’re going private and paying money, that’d be at your beacon call right? :)
        I went through the public health system in New Zealand, so it didn’t cost me for all of my 7 surgeries, and they assigned me a nurse that came out to my house all the time. Pretty good really!! Just means that you’re constantly on waiting lists, and you usually see a bunch of different surgeons, rather than just one.
        Yeah the C-bag thing totally made sense to me when I heard about it. I’m suprised they don’t all do that??
        Definitely seems worse at night when you can’t call anyone. And I know what it’s like waiting around, panicking that something is wrong, until you see a doctor or a surgeon. I had so many weeks like that. But in the end, everything turned out ok. It’s a stressful, full on time, that’s for sure!!
        So your Surgeon is a little concerned… well, hopefully it’s just because your BMs were so watery from taking movicol that some has leaked through somehow, but it hasn’t affected the flap. It’s good he’s leaving it 24 hours. I guess he wants to see if it happens again. So are you actually going in to see him tomorrow so he can assess you? Yes it totally sucks waiting to get an answer! I used to wish I could just give myself a scan or something and check it was all ok!! It’s a great sign if you’re not in pain. If the flap had ‘ripped’ off a little bit, that would be REALLY painful.
        Have you stopped taking the Movicol for a bit? At least you know that stuff works! haha!!
        Good luck for tomorrow, let us all know how you get on!!!
        Your tips are great! Especially the hair dryer one, I never thought of that!! :)

      • Hey again, well another evening another BM and another “leaky” affair via the old tract. I’m pretty much resigned to fact that something isn’t right :(

        Will book on tomorrow with surgeon and see what comes of it.

        Who knows this time tomorrow I could be back under the influence of some fantastic painkillers ;)

        Hope all well.
        M/sorebun

      • Hi M! Sorry to hear you had another bad night with the same thing happening!! Try not to worry too much, wait and see what your surgeon says. Good luck, and let us know what happens! Remember, if there is something wrong, there will be a solution, and you will get back to normal eventually… it might just be another bump in the road to recovery!! Keep your chin up…. and get some tramadol!! :)

  37. Hi M. I’m glad you have been able to share your experience on this website. I know very well how it feels to cope with unexpected fistula “events”, especially in the middle of the night!
    I am almost too scared to ask this question, but has anyone had a fistula heal and close whilst setons were in place?
    I have had setons in place for a fistula in the 11 o’clock position for 11 months. My surgeon seems to be happy with how things are progressing so far. I also read an article online about seton procedures for anal fistulas where most of the patients did heal, but it took from 2 months to 2 years. I have almost put my life “on hold”, waiting for the fistula to heal, but am I being unrealistic?
    Reading this website has helped me to feel less “alone” with my setons, so thanks to everyone who has shared their experience and to the people who monitor the website.
    If anyone can answer my question that I am too scared to ask, please do it gently! :-)

    • Hi Diana, I had two setons running through two fistulas, and I had 7 surgeries, including finally an advancement flap – That whole process took 2.5 years. But I’m fine now! It is a long process, and you do feel like you’re putting your life on hold, but a couple of years isn’t much in the scheme of things. You’ll get there in the end!! :)
      I haven’t heard of anyone having a fistula heal over a seton. I would imagine that surgeons would keep an eye on it over time so that doesn’t happen? If you’ve had a fistula in for 11 months and your surgeon is happy with how things are progressing, then you must be nearly due for an operation? I know that they leave the seton in there until the last possible moment, so that everything is as healed and as healthy as possible before they do a ‘fixing’ operation like an advancement flap. Like I said, I waited over 2 years for that to happen. You’re on the right track!! :)

  38. Thanks so much for your answer to the question I was too afraid to ask! I could not logically in my own mind see how a fistula could close by itself – I am in the medical field and it does not fit in with my knowledge of how the body works!
    What you have said in your reply makes more sense to me, and I think the surgeons do not want patients to know what can possibly be on the road ahead because most people would get freaked out by the thought of it (I speak for myself!).
    In a way, your reply is a Godsend to me because it makes perfect sense. I do need to plan for the possibility of further surgery and I must continue with my current frame of mind, which is to relax and be thankful for the setons, and to do everything possible to help healing.
    Last night I read about the diet on this website, and that is also such a relevant point – I learnt the hard way that I cannot eat “just anything” – I need to eat a certain way to assist healing and regular BM’s. Thanks again for all your help and positive support :-)

  39. Hi Everyone, i had a perianal abscess that was drained a week ago. It was done by General Surgeon. I told him that I can feel a fistula has already formed and he just told me that we can deal with it later. My worry is if the wound closed, the abscess might reoccur. Im on Flagyl 3x a day and have very high hopes as after 30 mins after taking, I would feel that my fistula is closing since no gas is passing over there but later on, as i pass gas, it would reopen and pass thru the fistula. How will it heal if it keeps on opening.
    I carried this abscess for 3 months and was wondering if Flagyl could really close up a fistula? i am really hoping fistula would close first before the drained abscess.. packing is done every 3 days without any anti pain and the doctor would just pull out the packing without soaking it first so it was hellishly painful. and then he will repack it with dry gauze,. can u imagine the pain of it poking everywhere in the wound… the beauty is that i feel so much better after the packing has been changed.
    Sitz bath with betadine solution also helps disinfect the wound.
    I made a mistake by not going directly to a colorectal surgeon so he can do together the abscess draining and correcting the fistula at a time. Im afraid to go undergo surgery again for the fistula.
    Can someone tell me if the surgeon would incise that part again or it will be just a small hole? Its okay for me to have the seton but what im afraid of is open wounds.

  40. Hi Ralphy. I also started by having a peri-anal abcess which was the size of a tennis ball. The surgeon drained it and told me I had the highest pain threshold he had ever seen in his life but at that stage I did not have a lot of pain. I had wonderful wound nurses who dressed the wound, but the 3 years since that first emergency operation have not been easy.
    I would rather that a medical expert responds to your concerns as everyone seems to have different experiences with anal abcesses and fistulas.
    I am not a doctor, but as far as I know, Flagyl is an antibiotic which is specifically used to treat these kind of abcesses, and its success in dealing with the problem is individually based (like all kinds of medical treatment). Positive thinking and eating properly will help with your recovery, and keeping everything as clean as possible is essential.
    I wish you all the best and hope you get the best possible advice and care :-)

  41. Hi all,im a 38yr old aussie male and its been really helpful to hear im not alone with this embarresing,painful,smelly,antagonising problem.I have been dealing with a fistula for 3yrs now,ive had multile procedures done,ie:seton inserted,removed,plugged,braided seton etc etc.
    I am currently writing this with my braided seton inplace,and this time the amount of discharge is phenominal,and the smell now as opposed to the first seton is disgusting,perhaps a good sign???
    My big question with seton\’s is,how can anything heal/drain when u deliberately keep a wound open internally inside your anus,i mean the amount of crap (literally) that get inside,rubs along it is disgusting!?!?
    I hate it and have been having a real hard time lately,im alone and im so over it..(

    • Hi Jason – we all know exactly how you feel, and really sorry to hear you’re so over it, it’s a really awful sickness, and most people will never understand how horrible it can be! But you will get better, so just take it one day at a time.
      A seton isn’t there to ‘heal’ a fistula – a seton is there to keep the fistula open so that it can get to a point where it is ready to be healed.
      They keep the fistula open with a seton so that your body is constantly draining infection, so that another abscess can’t develop in there. If you didn’t have a seton in place, both ends of the fistula would close up, and you’d be left with a massive abscess inside the fistula and needing more surgery. It’s a solution and a means to an end. As hard as it is to cope with, the seton is there to help you get to a point where your fistula can be ‘fixed’.
      Once your surgeon thinks that the fistula has drained enough, and there is no sign of infection/pus anymore, and all the tissue around the fistula looks healthy again – that’s when they will do a ‘fixing’ operation – like an Advancement flap, or a plug.
      So have you had the plug surgery, and it didn’t work?
      If there’s a really weird smell, that usually means there’s infection – has your surgeon put you on antibiotics much?
      Maybe you should get a second opinion from another surgeon? I got three different opinions…
      I’m not surprised you’re over it, if it’s been 3 years, that’s a long time to live with having a seton and loads of operations – but you’ll get there in the end. I hope you’re keeping really really healthy – your diet makes a massive difference. I had to really change my lifestyle for a few years. No booze, no bad food, heaps of water, no gluten, no dairy… it seems unfair having to make such massive changes, especially when you love a few wines!! But it’s worth it in the end if it means you get better.
      Hang in there, and feel free to vent on this website and ask more questions!! :)

      • Hi! Have youbeen completely healed please email me, i am so not ok at themoment and i need someone to talk to about this fistula thing

  42. Hi Jason
    I’m sorry to hear about your experience. You are asking the same question that I am asking – how can a fistula heal while setons are in place? It defies logic surely? My understanding is that a fistula is open at both ends, and setons are put in place to keep it open so that it drains and does not build up an abcess.
    I would like an expert to answer our question, but I am scared at the same time to hear the answer.
    I’m also alone and it has been the hardest time of my life. I can’t say anything that will take away your personal discomfort and frustration – I can only say that I understand completely how you feel.
    The “alone-ness” is amplified because unless you have personally been through an experience like this, you cannot understand how it feels. When I had the setons put in last year in September, everyone would ask me if my surgery had healed, and they did not understand when I told them it could take up to 2 years to “heal”. Now that I have read this website I don’t know what to expect.
    All I can say is that it is the hardest thing in the world but one has to try and be positive and just cope as best as you can from day to day. It’s important to eat the right things and to think the right thoughts and to persevere with staying clean.
    I try to be really happy for every day that I am able to go to work (touch wood) and although I am alone and wish I had someone to hold my hand, perhaps it would be too much for someone else to cope with?
    Jason, thank you for sharing your story – a problem shared is a problem halved. Hang in there … we’re all with you :-)

    • So true Diana!! And keeping the wound/fistula clean is sooo important as well!! I actually had a bidet installed in my flat! Seems extreme, but gosh, it made such a difference!! Always washing the area, even during the day when you’re at work, with wet wipes or whatever. Eating right, getting lots of fresh air, trying to stay positive – as hard as it is sometimes!!!
      As far as it being too much for someone else to cope with, I don’t think that’s the case. I had a boyfriend during the worst time of my ‘fistula journey’, and he was fine with it, we’re not together now though haha!! I think if you meet the right person, they would understand. But getting yourself better, and focusing on yourself, and doing what’s best for you, keeping extra healthy – that’s the most important thing at the moment anyway :)

  43. thank u so much for your words of support,i cant belive how much it helps getting contacted by a total stranger but who happens to know exactly what u are going through makes a huuuuge difference….i woke up this morning,usual pain/inspection/depression then decided to check my mail,,,,and feel much better now,even if it is temporary ill take it..thanks again..)

    • Hey no worries!!! :) Glad this site is helping you feel better about it all – that’s why I made it, there didn’t seem to be anything on the internet beforehand! I know it’s painful, and it’s a long time to endure pain… and believe me I know how depressing it is to look at your bum every day and see the wound and the seton and think – WHAT THE!?!? How did this happen to me??!! But you’re not alone, there’s loads of us who have been going through it too. It’s pretty common actually! No one talks about it, that’s all. Use the fistula as motivation to get yourself in the best physical health you’ve ever been in. Walking (not so you’re irritating the wound), eating super healthy, being obsessively clean with your bum!! (as weird as that sounds), loads of water and sleep… and you’ll get better. Remember – it could be worse, you’re not dying, it’s just a bump in the road, seems like it’s taking ages, but you’ll get there!!! :) Have an awesome day, think about all the positive things in your life, and just try to live with the seton like it’s ‘part of you’ for a while, and it’s there to help you get better :)

  44. tahnk u all again,your words are so true,yes i have been anal about my anal cleanliness..lmao,but i supppose u have to ehh.Diet is something im definately working on as one would imagine,when u have holes/cavities inside your ass,u WANT solid healthy poo’s…) and to heal quicker etc etc.
    I guess the big question i found frustrating from the outset was the “how did i get it ” question,was it some wierd sex activity i got up to in my life ..lol..or what,what actually causes your body to start bloody internel drilling operations to connect parts that shouldnt????

    • I have no idea why. And the surgeons don’t seem to either. The illness is more common with people who have chrones disease. But I don’t have chrones…. I asked my surgeon over and over again… Why did I get this!?!? And he said that it was ‘bad luck’, and some people are just subseptable to it! It’s the infection that starts drilling tunnels… it starts eating away at the tissue. Not cool!!!!
      I think I had problems a long time ago, but left it too long to go to the doctor. I was living in London for 10 years and wasn’t being particularly good to my body, looking back now, I knew something was wrong, but I didn’t get properly sick until I got back to New Zealand! It’s just bad luck – but use it to your advantage and don’t let it get you down or ruin your life, get on top of it and get better :)
      I’ve heard of lots of people going on anti depressants because of fistulas. It’s really sad that it affects people so badly, and I think it’s a lot to do with feeling alone and not having anyone to talk to about your bum!!!
      Personally, it’s helped me to appreciate the good things in my life and not dwell on negative stuff that doesn’t really matter. It’s also eventually made me the healthiest I’ve been in a long time. I was really taking advantage of my health and thought I was invincible! So some good has come of it all for sure :) And now I’ve created this website and am helping other people – so there ya go – everything happens for a reason… and for now, it’s part of you and part of your life. But not forever :)

  45. Thanks again for a much-needed website – I’ve gained so much from this. Love your positive comments about eating and cleanliness, with which I totally agree. Thanks also for the reassurance that we don’t have to be without a partner – I actually think that if I do meet someone and they cope with my condition it means that they are a very special person. All in all, it can be a positive experience in spite of all the hardship :-)

  46. Hi, first of all I’d just like to say this website is great. People have the opportunity to learn something new and share information. I can’t believe its New Zealand based which is even better :) I would like to tell my story, Ill try and keep it brief.

    I was diagnosed with Ulcerative Colitis in the year 2008. Within the last 2 months I have had a total of 3 surgeries. 1st and 2nd times were both for the drainage of an abscess I had developed (Peri-anal abscess). Unfortunately as a result of this abscess I had further developed a fistula. Just last week I had another surgery more specifically an examination under anesthesia of the fistula and hence had a seton insertion.

    (-Insertion of a seton for anal fistula involving upper half of anal sphincter mechanism.)

    I had the surgery at Auckland Hospital and my surgeon was Arend Merrie, a specialist colorectal surgeon. Just like anyone else I have a few questions.

    A fews days after surgery things are going well apart from the slight discomfort of having a bowel movement. Is this normal after a seton insertion? I can walk alright however I get extremely bad back pain, anyone else experienced this? I always wash in the area after my bowel movement and use chlorhexidine(the pink stuff). I try to keep the area as clean as possible. I think my seton had actually moved last night, I could see the knot of where it had been tied. I moved it back to where it was by pulling the seton back around, should I have done this?

    Sitz bath. I have never had a sitz bath, does it help with fistulas and should I do this? Also does anyone know where I can buy one in Auckland?

    If you are reading this, thank you very much. I appreciate any responses.

    Kind Regards,

    • Over the past 3.5 years I have had 9 perianal abcesses all of which needed surgery. I have also had 4 MRI’s biopseys and 4 weeks ago I had a senton stitch inserted.
      I must have misunderstood the proceedure as I had not expected to bee in so much pain and although the stitch was on the anus when I was discharged from hospital it now hangs out about 4 inches which I dont understand as I have given up using loo paper and shower the area clean after every bowel movement as I am scared of catching it.
      The first 7 abcesses were on the right buttock but the last 2 have been horsehoe shaped in the perianal area.
      My surgeon told me the stitch would be left in for 2 months. I just dont think I can go though another month of this hell. I dont sleep I can hardly walk in fact a friend lives 10 door away and if I want to visit them i have to be collected by car! I am in pain all the time and even find it hard to pick things up off the floor as when I bend over I feel tjings getting so tight inside I am scared to stitch may rip me open.
      I am seeing my surgeon again this week and am tempted to ask them to take it out early but at the same time I want to give it time to work.
      I noticed some of you guys have had them in for months or even years how on earth do you cope with this hell?
      Having had so much surgery (4 operations since November 2011) My employers are getting fed up with me. i have only been able to work for 8 weeks this year!
      Because its a backside related condition my friends are always cracking jokes which I also go along with but I know it is no laughing matter and its getting me down.
      Even my surgeon refers to this as a monor condition. If he had one he could see that although it is not life threatening (although I have had 2 major anaphalactic shock as I was allergic to the antibiotics I was given) it is life changing.
      I am on half pay and my career is under threat and i could not go to watch olympic events with friends as i can never plan for events of=r holidays with this condition ruining my life!
      Do any of you feel the same?
      I just dont get why none of the surgeond can get to the “bottom” of this condition.
      Where on earth is all of this pus coming from???
      Look forward to hearing from anyone with any answers or support as i am at my whits end!!
      Debster.
      My first

      • Hi Debster, Sorry to hear you’re going through so much pain and are so over it. We can all relate!!! I don’t think the surgeons know how much it affects peoples lives, they’re very matter of fact, I guess they have to be. I always wonder why there aren’t better/more effective ways to treat this problem as there seem to be so many people with fistulas! Your friends may be trying to ‘lighten’ the situation by making jokes about it, but you’re right, it’s not funny, they wouldn’t know what it’s like and it does get you down. I had 2 years of ‘putting my life on hold’ because of fistulas, not going on holidays because I didn’t know when I’d need another operation, missing out on loads of things. But unfortunately, you’ve got to do what’s been at the moment in order to get better… and if that means putting your life on hold, and putting your health first for a while, then that’s what you have to do. Eat extremely healthy food, loads of water, sounds like you’re being really clean which is awesome… you’ll get there. The pus is all the infection draining out, your body is fighting it, and trying to heal, once the pus stops, and things start ‘drying up’ a bit, then they’ll look at fixing you. I can understand you’re at your wits end, it’s such an awful thing to go through!! You’re not alone though – just look at all the people on this site! It’s part of your life journey (unfortunately), but you’ll get through it eventually and come out the other side. Try to be happy and positive and do things you enjoy, I know it’s hard – one day at a time!! Keep us updated on your progress :)

  47. Hi Debster
    When I had my operation for the seton procedure, I was in the worst pain I have ever felt in my life after than operation. The surgeon had told me that I would be ready to go back to work in a few days but I needed longer because the pain was so bad that I took strong painkillers for the first time in my life, and I am 55!
    When I had the initial peri-anal abcess drained (which was the size of a tennis ball), the surgeon said I had the highest pain threshold he had ever come across. Most physios have told me the same. I did not experience a lot of pain with the abcess operation – the worst part of that was the wound care and the huge plug of bandaging that was needed.
    I might have said it in a previous post, but I have been through hell with this condition. The saddest part about reading this website is that I have come to the conclusion that it will be part of my life in some form for the rest of my life, but at the same time I am so thankful to know that other people have felt like I have about the whole thing and that I can openly talk about it on this website. I am feeling more relaxed and am able to accept the seton as something which is actually saving my life.
    If you read back over all the entries on this site, you will see that there are some things common to everyone and others that are different. Each of us has a mind and a body and some people have good medical and family support, and others don’t. We all cope differently, and we all heal in different ways.
    Debster, I know what has helped me and I hope you can find support too. This website has helped me more than anything to find acceptance, and that acceptance has encouraged me to be positive. I work in the medical profession and doctors are very keen here in SA to give out painkillers. I was very averse to them but that pain mentioned in my first paragraph gave me no choice. Reducing pain allows your body and mind to be more relaxed, which gives it a better chance to heal.
    Yes, this is an embarrassing condition. In my life it gave me the ability as a medical receptionist to be a sounding board for other people’s embarrassing conditions. They seem to sense that they can tell me their “embarrassing” concerns, and I am glad that they can because I feel zero embarrassment hearing about it. I wear the T-shirt.
    Good luck, Debster. Hang in there and smile. We are with you all the way :-)

    • Thanks for the words of encouragement its good to know other people are feeling the same. Here in the UK there is a programme called embharassing bodies and they have had a couple of people like us on there over the last couple of weeks you may find it interesting if you can get BBC i-player as there people got their lives back!
      Can anyone think of good questions to ask the surgeon tomorrow? if he says anything of use to us all I will post it s fingers crossed!

  48. It’s so interesting to read everyone who has had similar experiences. I will say I am a physician assistant in the United States and I have Crohns. I developed a very large perirectal abscess almost one year ago. Now I work in a hospital and have a gastroenterologist who sort of blew me off when I told him I was having rectal pain. I went to see my colorectal surgeon the next day who took me immediately to the operating room. I had a drain placed however it was not a seton drain. Now I have worked for a vascular surgeon for several years and had minimal experience with perirectal abscesses. I thought after surgery i would have this drain in for two weeks and it would be removed and the entire thing would be done with. Boy was I wrong. Even being a medical person who expects a little more explanation and plan of care conversation I was never informed that I would have this drain for months. 8 months after the initial procedure I went back to the operating room and was found to have three fistulous tracts leading the old abscess cavity that was still there. The surgeon placed a seton drain. Needless to say I was ver upset when I woke up from surgery and still have drain. Last week, 11 months after my initial abscess I had the rectal advancement flap. Surgeon was pleased with the results. I will continue to have drain for another six weeks. Overall surgical pain had been tolerable. For all those who are frustrated with the pain and struggles it has given me a new respect for what patients go through. My modesty has almost gone out the window. I am a better physician assistant as a result. The biggest thing I have learned is that you must have a list of questions for the surgeon. What are the options. What is the recovery. Write all the questions down and take someone with you to the appt.

  49. I read your story with horror ; i am sorry to say that i am unimpressed the the NHS ; the level of medical negligence is too high , the standard of basic hygiene and care in hospitals is too alarming. 1000 patients dies monthly in UK hospitals ! Your doctors dont have time and money to investigates your case . It is obvious that your immune system is too weak to fight anything; what is bad inside your body must come out somehow , with you its infections . Abcess left untreated lead to blood poisonning , antibiotics do not work .
    You need to find out what make your body to react that way , the basic blood test may not show in depth or are they simply too expensive. If i was you i would go private to obtain those tests . Another thing , your diet , whatever you eat or drink matter . . Good luck

  50. Hello AS in the USA!
    I basically learnt from this website that a drain is not a bad thing. I have had setons in place for nearly a year. They can be uncomfortable and of course I would love to be “normal” and not have a fistula, but I have learnt to be thankful for the draining that takes place. It effectively stops the build-up of another abcess.
    I have great respect for my surgeon but he does not like to discuss things in detail. I get the impression that he prefers his patients to live “day to day” rather than worry about what could happen to them in the future.
    One of the doctors I work for is a surgeon. He has a good “bedside manner” but some surgeons don’t.
    Previous posts on this website say that the advancement flap can be successful, so I hope you are well on your way to recovery :-)

  51. hello there, i have undergone a plug treatment this 4th august for recto vaginal fistula and its been 5 days already i am still passing stools from vagina. do u think its normal and if i should wait for sometime? or it has not worked. please help. regards khyati

    • You need to go and see your surgeon and get a check up to make sure everything is ok… Don’t wait around. If there is something wrong, and you leave it too long, you could make it worse. Go and see your surgeon today.

  52. hi
    i have the same case of yours and now i lost my job because of this problem ,,,, i make 9 surgery
    and doctor keep sayin we have to make another surger , but now i have no money no job just the same pain since 2007 . i don’t want to live :(

    • 5 years and 9 surgeries, that’s a lot for anyone to cope with. But you’re not dying, so don’t get disheartened. Where abouts in the world do you live? Can you get a second opinion from another surgeon? There should be a free service through your hopsital that offers counselling to help you get through this tough time. Keep your chin up… don’t let this beat you. You’ll get through it, you’ve just got to fight.

  53. Hi all, it’s been both horrifying and inspiring to read everyones experiences…here’s my story in brief.
    In 2006 I was on holiday with my family in Spain when my first perianal abscess appeared, I managed to get some antibiotics and after suffering an excruciating flight home I had an incision and drain. Later that year I had an MRI and colonoscopy to check for fistula but received no further treatment as the scan showed nothing (I now know fistulas don’t always show on MRI but almost always occur after an anal abscess). Over the next few years the abscess returned and was treated with antibiotics – the doctors seemed quite happy to just write prescriptions and I guess I wasn’t ready to deal with the underlying causes. In 2010 I noticed the abscesses were becoming more frequent and in 2011 I had my second incision and drain. It was then I decided it was time to face the reality that this wasn’t going to go away and I had to do something about it. After the usual NHS delays (I’m UK) I had another MRI and last week had my first EUA – the fistula was confirmed, the tract was probed and a seton inserted. I’ve not seen much evidence of draining and the pain seems to be slowly easing. I’m told the seton will be removed after 6 weeks and I’m due another EUA in 3 months. We’ll see what the future holds but whatever it is I’ll do my best to stay positive and keep smiling.

  54. Sorebum log. Star date 22/8/2012

    It’s been 4 weeks since part 2 of my flap advvmenet based anal adventures and now pushing some 8 mths of “fun”.

    After the first crack at flap advancement failed and was repaire the next week I saw my CRS the following week after a similar incident of runny number 2′s and a leaky wound. The CRS had a quick look and actually was pretty happy with how things had progressed – I.e no real issue just a “suck it and see” approach.

    I’ve been back at work for 3 weeks (desk job) and am feeling fairly good. Sick to death of having to wear freaking pads on my ass (still a bit of discharge and spotting of blood post BM’s. Nothing too major though I would be lying if I thought It is all over now.

    So life is kind of more normal – still Om restricted physical activity which I hate. Lost about 6lg due to having mainly soup for lunch an keeping thing a bit smarter.

    Anyhow! Time I slept :)

    Beer, M

    • Ok so that entry was clearly done on my iPhone! Sorry for th typos… I could blame he Endone/Tramadol I guess? ;)

      Anyhow! Today I decided to start a course of antibiotics – have had a nasty cough for the past week and a half and coughing + anal surgery means you are gonna have a bad time! Suffice to say I am also hoping that the antibiotics assist in decreasing the risk of anything ass related coming up.
      I have 2 overseas trips in October (1 go work one for family holiday) and cannot entertain the thought that this won’t work. My employer has been quite supportive (I am an open person and gave my direct manager a “full rundown”). No issues yet touch wood!

      Anyhow… Will keep all posted good or bad so there is hope or a warning to others in my tale. (again no pun intended! Hehe).

      All the best! M

  55. Hi Sorebum
    Yeah, this whole thing is a real “bummer” (pardon the pun). I saw my surgeon yesterday about my setons and he says it could be another year to eighteeen months with them! It is almost one year since they were put in.
    I also get a bit weary about the pads and have not exercised for 3 years now after being a highly tuned athlete for all 50 years of my life prior to the first peri-anal abcess.
    The only way I can cope is to be philosophical about it and be grateful I don’t suffer from some of the worse things that I see in my job as a Medical PA for 5 practitioners.
    You seem to be able to approach it with a sense of humour so keep that up!
    All the best
    Diana

  56. Like a lot people have already mentioned, I thought I was the only one who was going through this fistula process. I have had three surgeries within the last year and it looks as if I am going to have another one very soon.

    I would like to make a suggestion regarding pain management. When I had my first surgery, I was prescribed opiates for pain management along with recommended sitz baths. The opiates caused me to have constipation, which was an addition problem I did not need.
    To get away from the constipation treadmill, I got a license for medical cannabis. Using the edibles, it took my pain from a level 10 to level 2. Cannabis does not cause constipation and it helps me deal with my condition.

    So, it you are in a State that has been approved for medical cannabis, I would recommend you try the edibles. I raised the topic of cannabis with my doctor and they really did not have an opinion.
    If you do use cannabis for this condition, then plan on staying around the house all day. The edibles tend to last about 8 to 10 hours.

    MP

    • Very good point, MP!
      As it is a year since my last operation, I had forgotten how constipated the pain medication made me. The last thing you need with anal surgery!
      However, I’m sure a lot of people won’t be able to get medical cannabis (I certainly can’t!) so I think the best is to take the painkillers only long enough to get you over the worst pain.
      Has anyone had a seton replaced? My surgeon says it won’t be painful but I don’t believe him! He is talking about taking out the existing setons and putting in new ones.

  57. Hello all,
    I am a 47 year old single woman waiting to get my first Seton ring in… I have a complex fistula that my Doctor does not want remove. He said that if he puts in a draining seton things will get better. I have read all of your letters above and I am very scared of even getting the seton put in. Sounds like you are in more pain with it then without it. Does the pain lesson to a level which you do not need pain killers? I am so concerned with my future as a single woman as finding a partner willing to deal with this issue is almost impossible. Trying to keep my chin up but finding it harder and harder to do as time goes by. I eat alot of fibre, have 3 to 4 sits baths daily. Don’t do alot of excersie as it seems to make everything worse. Any advise on how to live with a fistula seton ring???

  58. Hi Annette
    My situation is similar to yours. I am 55 and single and have the same worries about finding a partner who can deal with this issue. My only answer to that would be that finding a person who can deal with it means they are a very special person!
    I have had setons in for exactly one year now and the surgeon wants to replace them in the next month. I was in a lot of pain immediately after having the setons put in, but it gradually eased off. The surgeon and my own GP gave me the impression that I would have the setons put in and within a few months I would be “fixed”!
    Well, every seton situation is different and every fistula or abcess is different so some of us take longer than others to heal.
    The ends of my setons became hard and started jabbing the skin in that area but I have learnt to wrap gauze squares carefully around the ends to stop that source of pain. I’ve taught myself to be grateful that this procedure allows the fistula to drain, which is a very good thing.
    I also eat healthily to minimise any issues with being regular.
    I used to run 6 times a week but have done no exercise since my operations other than to walk briskly whenever I can. For me, the running would be too jarring on the “wound”, and too much walking causes the seton ends to “jab” me too much. I miss running but have taken up other interests such as reading and art and even relaxing in front of the TV (previously unheard of for me!). I don’t have to worry about my weight because I am eating a healthy diet.
    Annette, don’t worry too much about pain. I work for doctors and pain is your body’s way of making you slow down when it wants to heal. Take painkillers if you need them because the stress of pain does not assist healing. Eventually the pain wears off – how soon will be an individual thing.
    In closing, I can honestly say that I am so thankful for the seton procedure and I hope everything will go well for you. Best advice – eat well, keep clean (sits baths – but not TOO many) and stay positive :-)

    • My sentons have now been in for about 10 weeks and unfortunatly the pain is constant every day. On a good day of which there are not many I manage to walk for about 15 minutes before the itching and burning get too much to bare. I eat a veggie diet and after each BM I shower myself clean which is difficlt when you go 4 times a day! I think my sentons are coming out in October and then they are looking at inserting a bioprosphetic plug to close the fistulas off. I hope that this will be an end to the 4 years of hell I am living and it will be my 10th operation for this horrid condition. Not being able to walk or do exercise is frustrating and I miss working for a living and my career is in danger as a result of this disease.
      Looking at this website it seems that some of us cope better than others and some are in more apin than others.

      Relationships seem like a thing of the past as it would be hard to find someone to deal with this and the amount of scaring I have. I am also scared that sex would be unbareable at this time in my life.

    • Thank you Diana. I have changed my eating habits and have already gotten use to doing nothing much. I will keep you posted once the seton ring is placed on Sept 24. Thanks again

  59. Wow… Finally someone else who knows what a literal pain on the butt this is. I am 5 days post LIFT surgery and am miserable… The pain feels like th abscess all over again.

    So happy that I’m not alone though… Thank you for sharing your experience… Makes me feel a little more human…

  60. Hi , I am a 44 year old female from the UK. I started of with a pea sized lump on my buttock which had been there a few months, I thought it was just a fatty lump, I wanted to loose weight for my wedding and decided to go jogging, that seemed to make the lump grow faster at a very quick pace, I went to my GP who gave me antibiotics, they didnt help, I went back to Gp and got another antibiotic. Still no relief. I ended up going to A & E , was diagnosed with a 15cm in diameter abcess, the swelling had spread nearly to the top of my lady parts (ouch.. and it was scary). I was put straight through to hospital where later in the day I had my abcess drained and a seton inserted (june 2010). I had my second follow up operation a month later (july 2010). In March 2011 I had a different stitch inserted , a tighter one where it is wrapped round a part of skin out side of the anus. It ended up too painful for me so reverted back to draining seaton (july 2011), For the first year of procedure I was in some what pain but this latest seaton which I have had in for over a year now has been not too bad to live with, just the odd few days that I am sore and uncomfortable, bathing is the best form of relief for me, I was told from the begining to have warm baths with no salt or bubble bath just plain water, I also find a soft spray shower head to cleanse the area, this helps me alot. So far I have had a constant stitch in for 2 years and 4 months, all surgeon tells me is that it is long term, no time scale given and my gp seems to know very little about it. It has taken me over two years to come across this site and I must say I have learnt quite a bit from reading other peoples experiences and it is nice to now that I am not alone.

    • I know your pain. I have had 8 perianal abcess operations and had sentons put in 3 months ago they are a living hell! I am in constant discomfort the itching keeps me awake at night and the last op near lady parts burns a lot. I hope they will take out the stitch next month as i cant stand it any longer. My surgeon is considering inserting a plug into the fistula I just hope that this puts an end to 4 years of misery! Washing really helps i shower after each BM an average of 4 times a day which brings some releif but even the water burns and makes me bleed. I just wish surgeon would find a cure for this horrid disease!!!
      Good luck.

  61. Hi Debster
    I understand your discomfort and pain, and I also wish there was a cure for these conditions. I am due to have my seton replaced on Thursday and am dreading it because it was so painful when I had it inserted exactly a year ago. I am glad that this support group exists because it is the only place where I can find people who truly understand what it feels like.

  62. Hi Guys, I had my abcess drained just 2 months ago that leaves me a fistula. However, i didnt have any surgery or seton for it but it is still open till now and still draining. I notice that its flaring after i go poo… but i feel better onwards. its like its nothing there.. What im reading here is having seton or not is the same., My worry if the opening closes up, then i might have another abscess.. Do you guys highly recommend any medical intervention, because honestly, after reading comments about seton, i feel not having is alot better.

    • Hi Ralph, Are you shure you have a fistula? You could have just an abcess and as long as it does not have a fistula leading to the abcess, feeding it with pos, it can cure and close itself. But, if you have a fistula going to the abcess you will need some sort of surgery to get rid of it, and as I understand a seton is more or less mandatory since the abcess needs to be open at all time to be able to leak out. If your abcess heals for some week or weeks followed by opening up (bursts by itself), you probably have a fistula “feeding” the abcess, then it is high time to see a specialist! No worries, a seton is not comfortable but its manageable! Good luck! /PeeBee

  63. Hi Ralph
    Every person responds differently to medical intervention. For me, the seton has been a good thing because it allows the fistula to stay open and keep draining. I have had one in for a full year, and I had it replaced today.
    I was given the impression that I would have the seton in for a few months and that the fistula would miraculously heal. Perhaps that is a possibility with a shallow fistula but it is not going to happen with mine.
    Since reading this website I have learnt to be thankful for the seton. If I did not have it, there is a good chance of an abcess building up again.
    You must do what is right for you, and I will hold thumbs that you have good medical practitioners where you are who will give you the best option for you.
    All the best :-)

    • Hi there fistula friends
      Yesterday I had my silicone seton replaced with a thin nylon seton. The previous one had been in for a year and was now too hard to leave in. Thankfully I am not in any pain after my operation (touch wood) but I am worried because there does not seem to be any draining occurring?
      Has anyone out there come across this type of seton, which is apparently the same as a silicone or rubber seton but is made of much softer material?
      Will it take a while for draining to occur after the operation? My surgeon seemed to be very happy with the operation and told me to only see him in a month’s time? I am so used to the draining going on that I feel worried if it is not happening!
      I probably sound neurotic but I think that most of my fellow fistula sufferers feel like that at some point!
      Any positive input would be appreciated, thanks :-)

  64. Hi, here a post from The Netherlands. Wow it’s like I’m reading my story! Sept last year I was in so much pain and I couldn’t sit. Been to the doctors office numerous times. After a month I started to feel a bumb in my butt and started to develop a fever. Long story short I ended up at the emergency room at the hospital. It started with one abcess, then another one, then a sepsis, a high fistula was found and then I was diagnosed with Crohn’s disease. I call it my neverending story. Till today I”ve been in the hospital numerous times, have had 6 surgeries, 3 open wounds and a seton was placed. I started with the 6mp meds in januari and have had antiobiotics from time to time. Because that didn’t stop the infections enough I had to take Humira aswell since last may. Turns out the Humira isn’t working for me and I had side effects so now I’m gonna start with Remicade. Because nothing seems to work I’m now gonna be entering a trial. The trial is injecting stem cells versus the Mucosa advancement flap. I’m hoping for the stem cells because I have read better results. The trial starts in the beginning of 2013. So I’m keeping my fingers crossed that the fistula will stay quiet till then. Has anyone here been treated with stem cells?

    @Diana Cairns, my surgeon was also mentioning replacing my rubber seton for a nylon one. That was before we decided to enter the trial. I’m also still curious about the nylon seton. I have searched the internet but couldn’t find any experiences. So I unfortunately I can’t take your worries away. I would say just call your surgeon and ask, he/she will understand your worries:)

  65. By the way I’ve also recently started a blog http://crohnically.blogspot.com and Facebook page ”Crohnically” about my story and tips.

  66. Hi Barbara
    Thanks for your comments and also for your blog details.
    It is exactly one week since I had the silicone seton replaced with a nylon one.
    Maybe other fistula and abcess sufferers will know what I mean when I say that I am actually “scared” to be positive!
    Anyway, the absolute truth is that the surgical procedure went very well for me. I had a wonderful anaesthetist (a lady) and I was sedated instead of having a general anaesthetic. I felt no pain at any time, and have had no pain during the last week (touch wood). The new nylon seton is SO MUCH MORE COMFORTABLE than the other one, which had been in for a year and had become very hard and was jabbing me all the time. I had to wrap it in gauze to stop the jabbing.
    I am still using gauze to take up the drainage. At first there was no drainage and I was a bit worried! I asked my surgeon about it and he said it was normal because of the smaller “channel”.
    I feel very blessed to have such a good surgeon, but like most surgeons, he does not talk a lot. It is such a joy to have no pain after the 4 years of suffering. I will probably be one of the patients who has to live with a seton indefinitely but I have come to terms with it (mainly thanks to this website!).
    We have a saying in South Africa : “vas byt!” It generally means “hang in there”! At the end of the day it is wonderful to know we are not alone and thank heavens that someone as long ago as the time of Hippocrates invented the seton procedure. Now I am truly thankful to whoever invented this nylon seton!
    Take care :-)

  67. I’m on month three of having a seton installed. I thought it was a short term “solution” to my fistula. After reading these post it appears some folkshave it in for years!
    Was anyone put on an antibiotic? What was the name and did it help?

  68. Hi Tony
    I also got the impression that the seton would be a short term thing and that “lo and behold” it would fall out and the fistula would be healed in a matter of months!
    The reality is that I have had one silicone seton in for a year and have just had a nylon one inserted. I am preparing myself to have this nylon one in for another year. My fistula is very deep and close to the shincter muscles so it cannot be operated on any more. Every case is obviously different.
    I was put on the antibiotic called Flagyl when the abcess burst and it gave me such bad side-effects that I will never take it again. It did not clear up the infection either.
    Again, everyone is different. Having worked for physicians, GP’s, dieticians (and now for infertility specialists), I can tell you that we are all as unique as our fingerprints when it comes to medication, nutrition, exercise, etc.
    Be positive about your seton – it is very important for a fistula to drain :-)

    • I was put on Flagyl for 6 weeks and saw no change. I see the doctor this afternoon and was hoping to be put on another antibiotic. THe drainage is more excesive now than ever. Thanks for the pep talk too…..

      • Hi Troy
        Flagyl is a very strong antibiotic and if you have been on it for 6 weeks, I am not sure that another antibiotic will help you?
        Do you take probiotics with the antibiotics? (A probiotic is a pill which helps to maintain the natural flora which are attacked by antibiotics).
        Please make sure you are eating healthily so that your body has a chance to heal. Try to avoid stress and be gentle and patient with the process, and be as positive as you can about healing.
        Do everything you can to manage the drainage. I used gauze squares around the seton, and pads to take up the drainage. I kept myself as clean as possible (without overdoing it) and changed the gauze and pads regularly (and still do after a year!).
        In some ways I would love to be the person I was before I had the abcess and fistula, but I cannot change what has happened to me so I accept it and work with it.
        All the best :-)

  69. Have had my senton in for 3 months now. Am seeing surgeon next week and hope he will talk about taking it out. It has drained every day but the discomfort of it cutting and itching has been a nighmare and if I had known how painful it was going to be dont think I would have agreed to it being done. Sounds like nylon ones are less painful.
    My surgeon is either going to do a fitulectomy (have had 8 in past which obviouslt did not work) or insert a plug. Have nayone had a plug if so did it work and how painful was it??

  70. Wow, I have been searching the web for sites about fistulas for years and luckily I found this one today after severa hours behind the screen. I am a man living in nothern europe. My fistula story started around 3 years ago with an abcess that came and went periodically, no open wound or so, just more or less painful. After some time I had it checked since I understood that it was no ordinary inflammation. Several checks where done and during this period I gradually became used to show my behind to doctors and nurses… A first surgery was done to empty the abcess but after some months it was back again.
    After ultrasonic and visual checks it was clear that it was a fistula and another surgery was planned. During the anesthesia (before the surgeon actually started) I reacted upon the gas and inhailed stomach fluid (aspirational phneumonia) which is not only bad but also very dangerous. (I have afterwards heard that I was lucky to survive). They kept me asleep for approx 4 hours (performed a bronchoscopy etc.) in the intensive care unit and when I woke up I coughed blood and could hardly breathe…It took me another good set of weeks to cure from that experience and the fistula surgery was not in my mind for a good year after that. Second time it was time for the surgery, it was interrupted. I was asleep in the operating room but the surgeant claimed that the fistula was not open and he could not do anything. What a disappointment when I woke up and was told that no surgery was done… Ok, so I lost confidence for the so called expert in this hospital (remember that doctors and surgeants are only humans, there are good ones and bad ones and people in between…).

    I tried another hospital and got a really good surgeant and have made all the right steps. Spinal anesthesia, silicon seton for 3 months (ruined the summer and the vacation) which was a not so nice experience. I have been so sore in the cheeks just due to friction that I have been walking like John Wayne in the evenings, and the pos leaking smells really bad. I am sure I am more sensitive about this than my environment but just to get a hint of a smell at work is a reminder and not good for the temper in the long run. It has also been very uncomfortable with the use of female panties protection pads. Quick and convenient but warm and the adhesive pulls hair… (not made for men for sure…) Anyway, I had my seton removed the other week and a collagen plug was inserted. Now I am at home for another 2 weeks and hopefully it will be a success, but after reading all topics and stories, I understand that it might take longer time and more surgeries. I noticed after taking a shower today that the collagen plug was out around 5 mm from the cheek and i had to cut it off with a scissor. Either it is on its way to get totally loose or it is natural since my swollow cheek is back to normal size which at least in my mind could cause the collagen to creep out. I will call my doctor tomorrow and I hope for the best. Thanks to all of you for sharing and let us hope for a revolutionary medical discovery in the near future how to easily cure fistulas!

  71. At what point do they remove the Seton? How do I know when to tell my doctor that I’m better and take it out? Does the drainage completely stop?

  72. Hi Troy and PeeBee
    I think the removal of a seton is individually based. Some people will have them in for weeks, some for months and some for years. I am into my second year. As far as I know, the purpose of a seton is to drain the fistula, so drainage should not stop while a seton is in place. I will let the experts inform you if I am incorrect.
    PeeBee, you have had quite a journey and I am impressed that you can share it openly. I must admit that I still can’t get used to being examined and I have been having peri-anal issues for four years. However, I work as a medical receptionist and people seem to sense that they can tell me anything that would normally be embarrassing. I feel absolutely no embarrasment and am now in an infertility centre, which also requires discussions about private health issues.
    Yes, it would be great if a miracle cure was discovered for fistulas and peri-anal abcesses! I believe that the discovery of the seton method in the days of Hippocrates IS a miracle.
    I also had discomfort from the silicone seton but I used to wrap the ends in a square of cotton gauze. Pads can be terrible but I also tried every possible option before I found which ones worked best for me. I often used to wonder how men could cope, because us women are at least used to pads!
    PeeBee, I hope things progress smoothly for you and that you have found the right surgeon.
    Troy, see if you can get your doctor to tell you more. I find that surgeons do not talk much as a general rule. Good luck!

  73. Thanks for your comments Diana, I have searched long time to get information but have not found any patient ‘reports’ until this site. You can find different medical aspects but they cover only the medical side of the problem leaving us patients good without answers. Well, I try to be relaxed about the examination part, its not my fault, its quite common aftr all and I need help to be cured and most important…it needs to be done! Thats why I was so glad to find this site, where its possible to share experiences. I did my surgery a bi more than a week ago now and the first week was ok, with progress, less pain etc. Then i think I overstressed the area one morning, with result that I started to bleed just a bit and since then I have had more pain for a few days… I hope it will heal because I am getting tired being at home without being able to do things (as long as it hurts I will take it easy easy) I hope for the best… I am positive that there must be a way to ‘weld’ or get a smooth joint of the seton tube instead of the normal irritating and painful knots, its just a matter of cost and development.
    Troy, I agree with Diana that some surgeants dont talk much, so prepare and write down questions before the visit, because I am sure you have more questions than the common information you will get! Good luck!

    • Hi PeeBee
      I used to be a very active runner but since having the first abcess which developed into a fistula, I have not done any running. I personally feel that patients with fistulas need to be gentle on themselves.
      I would like to know if anyone who has had peri-anal abcesses and fistulas has managed to be very active after their surgeries (i.e. running a half-marathon?)
      I walk around a lot at work and I do all my own housework but that is the sum total of my exercise.

      • Hi diana
        Ive had a seton for a yr and stsrted running again about six minths ago with no troubles. Im due for an advancement flap in 7 weeks so presume i wont run again for a whike

    • My surgeon is great….but not talkative, you are correct. I had my 3 month follow up yesterday. I thought I was a long way from any further action since the drainage seemed to have increased lately. TO my surprise, he said, lets do surgery on Monday. I will try a LIFT procedure first. If that isn’t possible I will do the plug with a flap…50/50 chance of healing on that one. I was shocked!! I dont know why he decided to procede…but I’m very happy. I don’t know anything about the LIFT procedure, but it sounds like it has a better chance of success……

  74. Hi Diana, you’re welcome and tnx for the info! I’m so happy for you that the nylon seton is such a relieve compared to the the rubber one! Why can’t they just use that one the first time?.. Unfortunaly I have to go into the MRI again this afternoon because I start to feel the painfull feeling in my bum again.. I’m guessing another abscess. If I will have to go in surgery I’m gonna ask my surgeon if she could also replace the seton for the nylon one. Btw my surgeon is also not very talktative, haha.. But she’s realy good at what she does and I know she so wants to help me, so I don’t mind, If I ask the right questions, I get a short but correct answers;)

    @Troy, I have my seton in since februari 2011 and it’s gonna stay there till the inflamation is quiet. Otherwise I will have a abscess in a instance. I was also told it was going to stay in for about 3 months, but they just can’t get my inflamation under control, so it’s staying there. That doesn’t mean I’m abscess free, unfortunately. Somehow the fistula can still manage to create abscesses that the seton can’t properly drain.

    I have also had Flagyl from time to time, no side effects. It realy helps. But they can’t give me Flagyl for to long, or I would become resistent.

    Take care!

    Greetings,
    Barbara

  75. Hi there,

    I’ve been through a lot the last few years with this fistula. I’ve all but given up. Lost my job, income, car and is now nothing but a bedridden morbid sod that’s completely broke.

    Sorry if I’m negative but after endless surgeries, medication and clueless doctors I’ve given up. Someone on here please give me some sorta advice cause I’m on the brink of ending it all.

    • Hi Chasez15! Thanks for joining the site, and I’m sorry to hear you’ve had such a hard few years. Fistulas can cause so much pain physically and emotionally, and someone that hasn’t been through it, wouldn’t understand. I don’t want to tell you what to do, or give you advice that you don’t want…but after going through it for a few years myself, the best thing I did (after being very depressed) was to one day just decide to take charge of my life, and I chose to not let the fistulas ruin my life, or control it. You need to work out a ‘plan’ and try to be positive (I know that’s hard to do).
      So what surgeries have you had? And do you currently have a seton in place?
      Fistulas are evil – but they’re not life threatening, and you CAN still enjoy your life, you just need to work out how to adapt. Nothing is worth taking your own life. Especially not a fistula.
      I had two complex high periennial fistulas and two setons and I had 7 different surgeries. I had the advancement flap surgery, and it worked and so far so good, I’m ok. You can be too. I took on a job with flexible hours, I made myself the healthiest that I could possibly be – fresh air, only the healthiest food, gave up drinking and smoking, very very strict with hygiene and washing the area so I didn’t keep getting infections, and loads of water and vitamin supplements. I started to feel stronger and more positive. I kept my social life up, I was dating. If I felt tired or in pain, I’d stay at home, but I made sure I didn’t become a recluse and stay in bed all the time, no matter how tired I was, because it wasn’t good for my mental state of mind. I made it my mission to get myself into my best peak physical shape, so that when I had the advancement flap surgery, I would be so strong and healthy, that there was no way it couldn’t work.
      You can beat this. You just need to pick yourself up and carry on. And no matter how many times you get knocked down, or things don’t heal, don’t give up!!! The negativity will only make you sicker.

  76. Hello.. this is a very good website. I’m from Malaysia and my doctor has confirmed that I have a fistula in ano. My doctor said i need to undergo a surgery to open it but it is nor urgent. Till now i have actually delayed the surgery for 2 months due to I’m so afraid to proceed. What are the risks during surgery and is it worth it to take the risk if cure is only 50/50?

  77. Hi Chasez15
    I agree with all the points in the above reply to you.
    Don’t give up – share your thoughts with us on this website. We know how hard it is more than anyone else can.
    I found it so hard to live with this condition after being a really physical person who ran 50km per week and was declared 100% healthy at the age of 53 – only 2 weeks before I discovered a peri-anal abcess which led to 5 surgeries in the last 3 years.
    I know how you feel, Chasez15. Try to follow all the advice about eating and hygiene above, and remember that we are with you all the way.
    Take care
    Diana :-)

    • I know its hard to stay positive but I find this site gives me more support than the medical profession! I too am going through hell at present had more biopsies yesterday they are looking for crohns again but dont think they found it. Has anyone else who has had perianal absesses been told they have another underlying cause? I have had 10 operations and am waiting for sentons to be taken out. My surgeon has had heart attack and cant operate at present I am on verge of getting fired and am sick of being told they dont know why I have this. The Sentons were suppossed to cure fistulas but they have found another 2! am now back on Cipro.
      Its good to know you guys understand the hell I am going through as unless you have this pain in the butt I really dont feel others empathise with this disease!

  78. Hi Debster
    I also find that this site has been a life-saver for me as far as trying to stay positive. Other people’s stories do not make me happy, but it helps to know that you are not alone. I have also been made to feel that the abcesses and fistula are somehow my fault by people who have no idea how embarrassing or painful or uncomfortable it is.
    According to the literature, there does seem to be a connection between Crohns disease and the development of fistulas and abcesses. I don’t have Crohns but in my case the first peri-anal abcess which was the size of a tennis ball developed while I was under incredible emotional and physical stress. I have a tendency to get tooth abcesses and now that I have practically no teeth left, the body found another place to have an abcess! I can’t tell you how much suffering I have been through, but I am sure you know only too well.
    I had my silicone seton changed on 13th September (exactly a month ago) and a nylon one was inserted. I had absolutely no pain until about a week ago when I was sure an infection was building up because I now felt an all too familiar pain. I have been on antibiotics this week (penicillin) and feel a bit less pain now – touch wood.
    I say “touch wood” because in 3 years I have gone through so much trauma that when people say “It can’t get any worse” I get really twitchy because I have gone through “not so bad” to “ten times worse” to “a bit better” to ” going through hell” – you name it, I’ve been there!
    I even had a near-death experience when the anesthetist for my second operation did not listen to me when I told him I must be very carefully anaesthetised. It took me about 10 hours to come back to life – the most disturbing experience ever.
    I hope the above will not scare any of the other readers on this site. I am only recounting this to let people know that I have survived everything (touch wood again!) and thanks to this website, I have managed to accept my seton and accept my condition. It has made me into a very empathetic person who will help anyone who is in pain or suffering, whether I know them or not. This has been a fantastic asset in my job in a medical environment.
    Out of suffering can come some good things – we just have to find them and hold onto them.
    I’m here for you, Debster – hang in there! At the end of the day we are our own heroes for going through these trials, and we are also members of a worldwide community supporting each other across the oceans :-)

    • Thanks for your reply sounds like you know the suffering like me. I too have had 2 near death expereinces as i have had 2 anaphalactic shocks to antibiotics that were suppossed to help me. I am seeing my surgeon again next week to discuss if they found Crohns disease. Dont think I have it and got the impression the surgeon could not see evidence of Crohns either. Problem is got the impression if its not that then they dont know what it is.
      Waiting to see if my surgeon is well enough to take sentons out this month. I have at least another absess forming maybe more.
      My employer now phones every week for progress report but to be honest think they are trying to play by the book as they told me if I am not better by Christmas i wont have a job! How can I be better when they dont know whats wrong with me or how to treat me?
      Although it sounds strange I really hope they found something during the biopsies as I am so tired of living in limbo and want my life back even if it means taking medication for life its got to be better than having eleven operations and awaiting even more.
      Good luck with nylon sentons i dont think thats an option for me they may look at a plug but as they dont know root of problem and my backside has had more holes in it than a culender I dont see how inserting a plug will resolve anything.
      I think CR surgeons should be made to read this site as then they may gain insight into how this “minor non life threatening condition really affects others in thier care

      • Hi Debster
        I am not a doctor so take what I say with a pinch of salt! In my case, I believe that my first peri-anal fistula arrived through over-production of adrenalin. There is a doctor in New Zealand who specialises in this and I read about it on his website.
        I was 100 per cent physically healthy in 2008 according to a top-to-toe medical done for entry to New Zealand. Then I went through incredible strain with packing, moving, selling, separating from my husband and a million other challenges. During that time I ran around like a crazy person and never once breathed properly. I was hyperventilating all the time. The basic fight-or-flight response gets overstimulated and too much adrenalin pours into the bloodstream. After a while, the immune response is affected, and in my case, it was in that area that the infection somehow started – I was eating very badly at the time, just grabbing a pie or a packet of crisps as I rushed around like a maniac!
        That said, it is not a convincing reason because my best friend at the time had a Yorkshire Terrier who had a peri-anal abcess exactly like mine! Dear little Gucci made a much better recovery than I did, but he had no job threats so I suppose it was easier for him!
        I believe that abcesses and fistulas in the peri-anal region JUST HAPPEN. I have been in medical long enough to know that everyone has a different response to stress or perhaps to incorrect eating. My boss is a Family Physician and he had a stroke a month ago at the age of 55 (same age as me). He was working too hard, training too hard and eating erratically (I worked with him from 7am to 7pm so I know).
        If I look at the effects of my problems compared to the effects of his, in some ways I am better off. His “advantage” is that he gets loads of sympathy. My “disadvantage” is that I cannot even tell anyone about my condition, and when I do, there is little understanding.
        Sorry such a long reply, Debster – I agree with your comment about surgeons. Stay strong – you can see by the website that some of the best people have to endure the worst things. Take care :-)

  79. I had my LIFT surgery last Monday. It has been a week of lots of pain. The Doc said he couldn’t put in a plug because I had ulcers around the fistula. Oh well, that was some new news. I’m also back on Flagyl for 6 weeks. The first couple of days are very painful, but 1 week later it is tolerable. I’m back to work, thank God. I will keep you folks posted as to how the LIFT works.
    Mentally it is tough….I can only encourage people that are going through this that your not alone! My wife has been a rock through the process when I have been ready to give up. I pray for everyone that has this afflicition that they can find someone to support them end lean on during the low times.

    • Hi Troy
      I’m so glad to hear that you are moving forward on your journey of fistula challenges! Your wife sounds really special and I am so glad that she is supporting you – that alone makes her a wonderful person, and it certainly shows that she loves you!
      Also glad to hear that you are back at work and I will pray for a good recovery all round. I’ve been worried about you so I am so glad you have let us know how it’s going.
      Be blessed.
      Diana :-)

  80. Hi Diana
    I agree with what you said about stress as my job involved targets that I found stressful to meet and the four months when I nearly hit them I ended put with another absess and more surgery.

  81. hi
    my father is suffering from this festula problem since last january…doctor said it was deep so he couldnt remove it by surgery and put seton…now he want surgery again to assure wether festula is visible now or not so that he can put it out…can u plz tell me is it possible that mri
    will confirm his assurance rather just doing an extra surgery……

  82. Hi Gia
    I’m not a doctor but in my experience the surgeons generally need to investigate fistulas by going in with a scope. When they investigate using a scope, they will usually make a decision as to what procedure is required and do it while the patient is under sedation. Fistulas can be very deep or they can be close to the surface, and the options available will vary according to the depth and position of the fistula. If you read back over this site, you will notice that surgery of some description is required.

  83. Hello all – it has been some time since my last update! Sorebum is my posting name. No longer all that apt though and i should probably change it to ‘milddiscomfortbum’ or somethign to that effect.

    So a quick rundown on my story to date:
    Feb/March of 2012 had an abcess that my GP didn’t recognise as an abcess. After multiple visits and multiple rounds of antibiotics (including a nasty reaction resulting in gastro like symptoms) I was finally referred to a CRS who took one look at the abcess which I’d diagnosed myself as a fistula (yay me?) and had me in for surgery that evening.

    It was a complex fistula (high) so a draining seton was put in place and i was left for some 12 weeks for the infection to clear. Up until that point and the abcess issues i was a very active/fit guy (early 30′s) and this was all kind of a shock.

    Anyhow – so after the 12weeks was up i booked in to see my CRS and he determined I was good for surgery for the seton to be removed and advancement flap surgery to be attempted.

    Flap surgery went ahead in June and I had 7 days post-op of what i’ll call a kind of blur that consisted of painkillers and nasty bowel movements. My first BM was wayyyy too hard and caused a slight tear in the flap. I had poo coming from the hole again and the pain was back so i promptly revisited my CRS for a review. He confirmed the isue and i was back under the knife for a 2nd flap surgery just 8 days after the first. He was able to ‘save’ the original surgery and so patched things up and i was again sent home.

    The next 2 weeks or so were a major pain. VERY sore and sorry – worse than the first surgery mainly due to having been through it already and probably being a little ‘tender’. More painkillers and more rest this time it looked to have done the job.

    I noticed though that after the ‘danger’ zone of 8 days had passed that my pain levels were still quite high – so i had another visit. Turned otu to be all quite ok – just the flap was stretching/tearing with movement and so was quite painful with scar tissue etc and healing.

    I’m now coming up to circa 3 months post op and am going OK. Every now and then I notice some pain in the bum region, i feel sometimes like my left buttock is knotted or a little sore – but nothing too much.

    I’ve started back up at the gym and am feeling better in myself at least! more human shall we say. I did have one incident post-going for my first run after surgery. I had a SUPER painful tailbone that felt bruised and so i gave any physical activity a bit of a break for a while.

    I still can’t sit down for any great length of time on anything hard/uncomfortable but i managed to get to my overseas destination and survive (yay) without any fistula related ‘fun’.

    So thats that for now – going ok. hopefully this is the end of it and hopefully this story helps someone out there :)

    Hope you all out there in fistula land are going well.

    I’ll keep checking in and feel free to ask any questions!
    Cheers,
    M.

  84. Hello Mild Discomfort Bum (haha)
    Thanks for your update fleeced with your usual sense of humour! Sounds like you went through quite a process.
    I still don’t have the courage to be active like I was before the abcess and fistula, other than lots of walking around at work.
    Hope everything settles down for you now, and glad to hear you got to your overseas destination.
    I am in my 3rd month with a nylon seton and going through issues of how to tell a guy in a new relationship about my “problem”. I asked my surgeon and he said “I wouldn’t even mention it”. Have to get my brain around that one.
    One thing is for sure – this website is a lifesaver for abcess and fistula sufferers because we can see that other people in the same situation go through similar challenges.
    Take care MDB!

    • Good luck telling your partner. Hope they are understanding to your plight!
      Am off into hospital this Thursday to have seton taken out new one put in and plugs inserted. Lets just hope its 12 th time lucky in the operating theatre of dreams or nightmares!!

  85. Hi Debster
    I seem to recall that you had a similar “partner” issue to mine. The irony is that my ex-husband would not have a problem with my fistula because he is a farmer and as farmers we tend to be involved face-on with a lot of medical issues in our livestock so we learn to accept all conditions as they present themselves.
    Somehow I know that a new partner would have to be some special kind of person to be able to deal with this, and the difficulty is going to be facing a break-up because of my fistula. It is hard to accept that a fistula has stopped me from running, the one thing that gives me pure joy, and now it is possibly harder to accept that it also prevents me from having a relationship.
    That said, Debster, I am thankful to be alive and have learnt to live for one day at a time, using my compassion to help others through their challenges.
    Good luck with your 12th surgery, Debster – I’ll be thinking of you :-)

    • Thanks for your best wishes I am deading tomorrow but hope the 12th op will work. Not having goog week my company have decided not to pay me as of today having told me I would be on full pay. So I am facing a bleak Christmas with no income and bills and a mortgage to pay.
      I keep telling myself things will get better just waiting for that to happen.

  86. Hi Debster
    Let us know how your op goes. I will be thinking of you. I’m so sorry to hear about your company’s decision.
    Don’t give up, Debster.
    I’ve discovered a painful lump which looks like an abcess next to my seton and I am also seriously worried about my job. I am hoping to see my surgeon tomorrow but it is going to be difficult to get out of the office without raising concerns.
    Take care and hang in there, Debster – we are all in this together.

  87. Good luck with lump Diana. Hope your company are more understanding than mine.
    The op went OK they have replaced my seton with plugs and inserted a black silk senton in the new fistula which it it dosnt fall out will be removed in Feb.
    I am in a lot of pain at present and dread going to the loo due to pain and bleeding.
    I just hope that when they put in additional plugs in the new year it will be behind me (no pun intended) I have forgotten what its like not to live with this condition. I have not been able to wipe my own backside since July! Think goodness we can support each other on this site as those who have not had this could not begin to understand our plight!
    Hope you get better soon.
    Best wishes.

  88. Hi Debster
    Thanks for the update.
    I saw my surgeon on Friday and I might be needing an operation, which means I will lose my job. I am still on probation and they will not view 2 weeks off kindly when I am new on the job.
    It appears that the lump is actually caused by the seton cutting through previous scar tissue. The surgeon needs to see me next week and then he will decide whether to remove the seton and “finish the process”. He says that if that is the decision, I will be in a lot of pain for about 2 weeks. If my surgeon says I will have pain, that usually means MEGA pain :-(
    I will pray for you to be able to move forwards to better health – please pray for me to somehow get through this next challenge in my fistula journey. Like you, I feel as if it is a never-ending process and other people always think that if you have an operation, it means you will be one hundred per cent better when it heals.
    Sadly, that’s not always the case.
    Take care, Debster :-)

  89. Hi Diana
    You will be in my thoughts and preyers and I hope that the next op is your last.
    I assume you are in the UK. If so look into getting ESA which is benefit for those with health conditions I am the process of applying for it myself as it also supports those who are working and on SSP Look on the direct.gov website to find out more. You could also look into Access to Work that supports those with medical conditions to get into supported employment. It is hard enough living with this disease without unsympathetic employers. i should know!
    Let me know how you get on this week. I feel your pain. Having had my op last Thursday I am now in a lot of pain and the bathroom is a torture chamber if you know what I mean.
    I hope that you can take some small comfort in knowing we are thinking of you and that you are not alone.
    Best wishes

  90. Hi Debster
    How are things going with you?
    I am in South Africa so we only have private healthcare. Thanks for telling me about the UK system because I am a British citizen and may have to go back there.
    Fortunately I don’t need an operation at the moment (touch wood).
    I hope you are over your worst pain and are recovering?
    Take care
    Diana

    • Hi Diana
      Its now nearly 4 weeks since last senton was put in and I am ok. The silk senton is a lot less painful than the rubber ones I had before. Although I am sore I hope that when I see my surgeon in Jan they will talk about taking this one out.
      I managed to get something called ESA as my sick pay ended its only £71 a week but better than nothing. I just hope that this is now working for me and that op number 13 will be the last! 13 is said to be lucky for some afterall.
      I hope you have a great Christmas and if you do return to the UK that you can get the help you need.
      Best of luck and lets hope that the new year is better and healthies for you and for all our fellow suffers!

  91. Ok guys, i feel your pain. Let me share with you what helped me with my perianal fistula. I’ve had one surgery (plug and flap at same time) i was trying to avoid.

    My understanding is that if the plug was used alone w/o the flap which was like a button stapled inside to my anus that hurt like hell (probably due to the location of it since it was between my sphincter muscles) and required pain killers, it may have been successful. yet, when there was one hard bowel movement, it was all over and the plug TORE out, ouch !!! I Hesitate to do another surgery unless it’s my only choice and would only do a plug no hard plastic “button” and question everything about this whole process in general.

    It seems the less I do the better off I am. For example, saltwater sitz baths seem to close it and then an abscess forms, swells, hurts so instead i’ll do an hydrogen peroxide wipe or apple cider wipe on area to keep it clean, disinfected but most importantly open!! It will dissolve the fats in tissue so that it can drain. I rarely have the problem now, far less frequent, and if it swells I may put a heating pad on it to help it drain. A hot tea bag could work or keeping a cotton ball on it that I soak with hydrogen peroxide or apple cider vinegar. The opposite of that is if you put soap, moisturizer cream, oils on it, it will heal and close. This is something you want to heal from the inside out, not close from the outside and have it balloon.

    My next attempt will be to use ozonated olive oil suppositories from inside of course, while keeping outside wiped with the H2O2 or ACV. This wiping or keeping it dry helped me tremendously !!! That serves two purposes, one to keep disinfected locally w/o dumping antibiotics throughout body that weakens digestion and body as whole causing fatigue, which the stress of this whole thing does enough, and two it helps tissues to heal and really well too. I know that immediatly after surgery, Japan used to inject this same substance to immediately heal the fistula within weeks if not days and nobody has to go through this – what injustice we have here in America with the most resources and advanced hospitals and professionals you would think. NOT FAIR. They even have procedures in India that heal in couple months that they don’t offer here! Very expensive to travel and do this though, cause it’s not offered here again.

    I also hold down or clam down that area, pinching off the fistula channel or tract if have to pass gas and learned not to fear it and squeeze it hard if i need to and if it’s not in that sensitive state yet, to help it drain. I’m hoping I don’t have to do that too much tho in fear it may reopen what has healed internally.

    Will I eventually have to face cutting it open and having the whole thing heal if all this doesn’t work? Possibly, but i’m trying to exhaust all my options As a natural health practitioner i’ve learned that sometimes what the Dr’s tell us isn’t what’s best. I’ve been at this for 4 years now!

    I did go to FL in ocean and it seemed to be the best thing for it yet it never healed just look so much better, smaller.

    Oh also I occasionally will do enemas to keep it clean and add yogurt or kefir to it.

    Hope this helps someone. we should all petition to have our dr’s do a simple irrigation with H2O2 followed by a series of ozonated olive oil injections, not too hard to do, inexpensive and they may lose patients from missing out on their multiple surgeries, but someone must feel for all of us??? You would think. What frustration and ongoing pain for some, i’m doing pretty good now. I remember how helpless I felt and you can’t let it consume you. Let it do what it has to do, help it along and an answer must come.

  92. Interesting discussion — is it a really good sign for me that my external opening seems to constantly build up with and discharge clearish/whitish/yellowish fluid?

  93. Hi James
    Since having a fistula with a seton (mine has been in for over a year), I always have a discharge like the one you describe, and it alternates with a red-coloured discharge or other normal BM colours (hope that doesn’t sound too gross???!!!).
    Hope that reassures you rather than alarms you. One thing I have learnt since being a fistula patient is that we need to prepare ourselves for unexpected outcomes and discuss them with a surgeon who we trust.
    I believe that the clearish/whitish/yellowish fluid is normal mucus from the bowel, but I stand to be corrected by a medical expert.
    All the best :-)

  94. Hi,

    I thought I’d give you an update on my neverending fistula story caused by Crohn’s disease. After Diana talked on this website about a nylon seton I asked my surgeon if maybe she could replace my rubber seton for this nylon one. My surgeon told me she didn’t have a nylon seton but she could place a smaller seton. I was having another abcess so I had to get another surgery anyway. The abcess was drained and my seton was replaced by the smaller one. After the initial post operative pain was gone I immediately felt the difference! No big irritating knots and walking and sitting down became so much easier. I have this smaller seton since october and am so glad we replaced it. My surgeon thought it would be a risk because a smaller seton would also mean a smaller wound opening. Puss could pile up much easier. I have had some moments where I thought the drainage wasn’t working enough and felt some pain again. But it discharged itsself eventually. I havent had an abcess since the last surgery in october. For me that’s a miracle because I was used to having another abcess about every two months. But most of all, now there are times where I just forget I have a seton. So Diana tnx for mentioning the option of another seton!

    About the puss, as Diana mentions above it is indeed a clearish/whitish/yellowish fluid. And as far as I know it’s a good thing that this kind of fluid is coming out. I do see some blood from time to time, but my surgeon told me that’s because of some granulation at the edge of the open wound.

    About the rest of my story. I’ve been send to The IBD professor in the Netherlands for a second opinion. It has been almost 1,5 years and they still can’t seem to get my type of disease under control. I have had Humira, Remicade and 6 MP meds but it’s not working. I still have inflammations. I even became toxic from the 6 MP, causing a severe anemia. So I needed a blood transfusion about 3 weeks ago. I’ve had an intake with the professor last week and he told me that he is thinking about placing a temporary stoma. If meds don’t work, this could be a good alternative to manage the fistula. When the fistula becomes more at rest they could try a flap surgery followed by injecting stemmcells into the fistula track. But first I will have to go through all the examinations again.. I will keep you updated.

    If anyone here has experience with a temporary stoma, I would love to hear from you.

    Take care!

    Barbara

  95. Hello. I just found this site. I’ve been reading through the stories.

    I am pretty early on in the process compared to most folks here. I’ve had some sort of abscess/sinus/fistula for the last year. Unfortunately, I’m unemployed and uninsured, so I haven’t been able to get surgery for it. I’ve been to three different emergency rooms because of my problem – twice, it was drained, and the third time I was told it didn’t need to be drained. It was just hurting, I guess. Each time, I was told I had something different. First it was a pilonidal abscess, then a perianal abscess, and the third time I had a pilonidal again plus an anal fistula.

    I can’t sit for more than a few minutes without a lot of pain. I’m a young fellow so I used to really enjoy playing computer games, but the pain is too distracting, and so my hobby has fallen by the wayside in recent months.

    I am not sure where I am going to get the money for a surgery. I’m trying hard to find a job but it has proven fruitless so far. I worry that I’m going to get some terrible body-wide infection and die because I can’t afford the surgery. It feels so awful and gross back there and the pain is constant. This really sucks.

    Thank you for the site. I will return one day, hopefully with good news.

    -Eddie

  96. Im so glad i found this forum =) im 34 year old woan from the UK.
    I do think that the surgeons/doctors dont explain any of it at all in detail really. they just tell you what they are going to do, not the causes or what may happen after.
    My story so far…………
    Just over a year ago i developed a lump right next to my rectum, having never had any trouble down in that region in my whole life i assumed it was a hemeroid and treated it with over the counter medicine. fast forward 6 days and i literally could not stand up straight, could barely walk and was in sheer agony, i managed to get an emergency appointment with my GP/doctor. She had a look and said “oh you poor thing” she was expecting to see an inflamed hemmeroid or something but she gave me a prescription for a very high dosage of antibiotics and told e if the pain didnt ease within 24 hours to pack a bag and go to the emergency department at the hospital and they would probably operate. Scared the life out of me as i wasnt expecting that plus i had a very bad experience the year before at hospital due to gallstones and having a routine day case operation to have my gall bladder removed, the surgeon didnt connect my blie duct back to my other bit so i collapsed a week later and spent a month in hospital having my abdomen washed out because bile had leaked round my body. so back to first peri=anal abscess.
    I was admitted, put under anasthetic and was told afterwards it had been cut out and packed (im assuming incised would have been a better description) spent a couple of weeks having it packed by a district nurse who felt the need to stick something sharp and pointy into the wound to gauge the depth of it??????? very painful! especially as they never gave you a time at which they would call and so my pain relief was usually wearing off by the time they showed haha! i hated that nurse!
    I actually discovered this forum as i am just home from having my second perianal abscess incised and packed and wanted advice on the practical side of after care. I am terrified of having a BM. especially as i found with my first surgery that as soon as i went to the bathroom, my packing just dropped out and i sppent the night worrying in case it healed over the top and i would end up with the same abscess =( i basically had a shower and then lay on the bed and packed it again myself. I remember the doctor in hospital saying to me ” when you have a shower take the packing out and pop your finger in the wound that will make sure it heals properly” ha! i thought this was the craziest thing ever to suggest that when i was in so much pain! turns out he was right, i ended up doing that and packing my wounds myself by feel and touch rather than let the torturous nurse keep attacking me lol with the odd visit to a district nurse in between to get more dressings. All went well healed in a few weeks, problem solved and i put it behind me (no pun intended haha).
    Never gave it another thought but this time i went to emergency on friday, been treated appallingly by two different hospital emergency departments. The nurse who saw me at A&E yesterday morning basically made me out to be a drama queen and was annoyed that she had to wait for the other hospital to fax my notes through. she had a look and said “well its not as big as i thought it would be considering how you are behaving”!!!!!!! clearly never experienced an abscess then hey? she said she would get a surgeon down to have a look but they probably wouldnt do anything and send me home! at this point i was crying because i couldnt even walk and didnt know what to do. so waited for surgeon to check it and just before she walked in the room it burst!! =) it was gross but i was so happy!! just because the pain eased instantly! i was nearly laughing with happiness haha. and also i thought to myself wooo hooo! i wont have to have an operation! she then proceeded to squeeze what was left in it to try and gett everything out of it “OUCH!!” (i still havnt had a look to see anything or have a nosy and i dont want to. and just to point out as i did to the bad mannered nurse, doesnt matter the size of the abscess on the outside, its how deep it goes that matters because thats the dangerous bit.
    my surgeon this time said he was going to stick something in my bottom 10 cm up to see if i had a fistula while i was knocked out??? i am so confused as i dont know evrything is, dont even know what he stuck int here to look haha, just said do what you want while im knocked out but make sure im knocked out =) then he said if he found a fistula he would put a seton in and i had to sign and agree to it??? i did but i didnt even know what it was? anyway, i woke up with no seton………. same as befoe, incised and packed. repeating the same process as before.
    What im looking for on here is advice or top tips on going to the toilet……i asked the to give me a stool softener (lactulose) so that when i do go for a BM its going to be less strenuous but is there a way i can dress the wound before hand to make sure no bacteria gets in? im terrified of it getting infected again. obviously i am having a shower afterwards, i am going to try and cover the packing with a dressing so when i get out of the shower i can just replace a dry dressing over the packing again rather than having to put new packing in (its 2am and im in pain and exhausted). so yeah any top tips or tricks please from you guys!!
    I a going to visit my GP and ask to be tested for ulcerative colitis and chron’s as i suspect fro syptoms ive had the past year i ay have one or the other but we shall see. from what ive read though on here, im thinking the fistula forms because of the abscesses right? so im hoping and praying this doesnt happen and thanking my lucky stars i havnt got a seton.
    Thank you everyone who has wrote on here, i feel so uch better knowing im not alone, it does seem a taboo subject and people dont really understand the amount of pain involved, i think they imagin it to be like a spot (acne) on your bum!!
    i wish you all well and will keep you updated on what happens next, even if its nothing =)

    tina

  97. Hi Tina
    You sound like a very brave person who is dealing well with what you have been through!
    I had a peri-anal abcess the size of a tennis ball which was excised by emergency surgery 4 years ago. My wound was packed by a very kind nurse and it was healing quite well until I had to move cities and all the strenuous work led to another operation in the same area.
    This time my wound wasn’t packed immediately after surgery and I went septic over the first weekend at home, resulting in another operation. This took 3 months to heal because it was a very deep wound but I had a good nurse who packed it and then I had no problems for more than a year after healing.
    Eighteen months after the first operation, I had to have yet another operation. I had a very good surgeon and he inserted a seton which stayed in for a year. This was replaced with a nylon seton 8 months ago. Setons are not something to worry about if you have a good surgeon because they help the fistula to drain.
    I can’t give you much advice about BM’s but I found that eating the right food to promote regular movement and taking lactulose to soften the stools helped.
    Has anyone advised you about having “sit baths”, which is washing the area in salt water? Ask your GP whether this is appropriate for you, because it helped me a lot. I was diligent about keeping myself as clean as possible.
    Other people who have not had this experience will not understand what we have to go through but I got a great deal of comfort from this website.
    Keep up your great attitude, Tina, and I hope you get good medical care and make a quick recovery.

  98. Tina, what helps is each morning, maybe more often, and definitely when swollen or painful, put some hydrogen peroxide on a tissue or cotton ball and soak it, just keep it against the area best you can for few minutes. It will help to drain it as it strips the oils or fats off the skin and allow it to leak.

    Also, if need to help it along can sit on a heating pad. If it’s already open and drained but hurts, and again only if it is opened, can apply some ice, just wrap an ice cube with a wet tissue again and apply to stop the pain, this can also be done with hemorrhoids or after surgery for severe pain, the only thing that really helps more then the pain killers directly on the area that has been traumatized.

    You couldn’t imagine how much abuse the anus takes during that surgery and turns black and is extremely painful. Also try breathing in steam after surgery cause many times the respirator they put on people when they are “knocked out” or put under dries out the lungs with the oxygen that normally don’t accompany moisture and many people get mucus with body trying to protect and hence bronchitis and Pneumonia when in hospital, same thing during winter dry months or dry summer months – humidify. Hope this helps — Michael

  99. Wow, you just don’t realise how many people are affected by Fistulas. I have a Vaginoperineal Fistula( i think that’s how you say it), and have had one surgery to have a seton placed, on follow up i have been told that it has not been completely successful in collapsing the branches that are coming off of the fistula so tomorrow i am having the seton replaced and having the branches re-scraped…nice. Hopefully in a couple of months when i have my next MRI (5th or 6th by then) it will show that the branches have gone and then i can have the definitive procedure. Having discussed the options with my consultant i have decided that i would like to try the glue or plug first and if these don’t work then move onto the cutting seton, my fistula is a complex one and is too high to lay open as there is too much muscle involved. I have been suffering with this for nearly 2 years now and have to say that considering how common it seems to be I did not get diagnosed quickly (about a year of being told it was an absess or bartholin cyst and being given antibiotics), eventually i got sent to see a gynae consultant who was brilliant and picked it up straight away and re-referred me to colorectal consultant (however even he had to convince his boss who was also called in to examine me and said she could not see any evidence). I have to say i do feel better with the draining seton in than i have done in a long time, it was almost a year of antiboitics to begin with when the doctors weren’t sure of the problem, and they left me feeling awful. I’m hoping that tomorrow’s surgery goes well and am incredibly lucky that i have such an understanding employer otherwise all the time off would be even more stressful. Good luck to everyone else!

  100. Reading these comments have been incredibly boosting. I have lived with constipation all my adult life (I’m 46) but a campylorbactor bout of food poisoning 18 months ago brought it to a different level. Besides not being able to manage the constipation I also had bouts of excessive blood loss with BM. Eventually my GP referred me to a colorectal surgeon who decided my problems were constipation!!! He wrote to my GP and suggested my haemorrhoids and constipation would be resolved if I had my thyroxine (I’m hypothyroid) increased – and if it made me happy to use suppositories – carry on (a veiled suggestion of hyperchondria).

    So, thyroxine increased, and a bottle of milk of magnesia a week and I was still constipated, suffering from bout of heavy clotted bleeding and not to mention pain. But something did change – I stopped bleeding???

    And then the pain came. Unable to sit, stand or walk properly – I fidgeted like a child – until I could no longer cope without a cocktail of painkillers – two months off work – eventually saw a very kind colorectal surgeon who examined me under general anaesthetic. I awoke to be told I had been fitted with a seton (never heard of this before) and the nurse said it would probably fall out ??

    Your forum has been incredibly useful in filling the gaps – surgeons generally don’t do much talking – so my rubber seton is not likely to fall out on its own and I may be at the start of a long journey?

    I have an MRI scan in about a week and then back to the surgeon for a follow up.

    Not sure quite what will follow now – but it’s a waste of time and energy to worry about it – I shall take the advice many of you offer – and take each day as it comes and try to smile a lot.

    Many thanks

  101. Hi Barbara – first of all, ignore any insinuations that you might be a hypochondriac. I’ve worked for GP’s and physicians for many years and a huge proportion of the population suffer from stomach-related problems. I personally believe that diet and stress are the main reasons behind constipation, acid burn or “the runs”. I suffered from constipation for 25 years and then I saw a dietician and simply by eating the correct foods for me, I became regular and “normal” within 2 weeks. Three years later I lapsed into eating all the wrong things, coupled with extreme stress, and ended up with the peri-anal abcess which started my own painful journey. I have had a seton in for a full year from September 2011 to September 2012, and then it was replaced with a nylon seton which I have had for 6 months now. I was also told that the seton would “fall out” but I think that only happens if the fistula is very shallow or close to the surface. My fistula was effectively 8 cm deep and 4cm wide after my third operation, so I have had to accept that the fistula is long-term and take one day at a time. The fistula reminds me to eat correctly all the time, and if I eat correctly I am a much healthier person all round so it is doing me a favour! I went through all the usual “why me” pain and suffering but at the end of the day I am grateful to be alive and functional (touch wood) because in a medical practice you see many conditions that people can suffer from. I don’t think we choose to be unwell or that we choose to be in an accident – life “just happens” and so does death and illness. Our biggest lesson is to learn to be compassionate. I hope you have people who support you, Barbara – be brave and strong because we are all here for you :-)

    • Thank you Diana. This experience has made me address some issues. I have ignored my lactose intolerance and just generally avoided diary and I know wheat has an effect with producing plaques of eczema. Otherwise I ate healthily – plenty of fruit and veg and very little junk food. However, I am pro active now and hoping to see improvements – definitely less flatulence without dairy!!!! So it must be making life better for the people around me.

  102. Well I have got my date for operation number 13. I am having my 2nd lot of setons taken out and plugged I am hoping that this works and I will be able to return to work on a part-time basis following nearly a year of constant pain and 7 or 8 operations! I just want a life now. I know that if I go back to work and it flares up again I will loose my job this time. I just wish CR surgeons had a cure and more sympathy for us poor sufferers. During my last visit my sureon said well no one dies from this as far as i know! Having had 3 anaphalactic shocks whilst undergoing treatment for this deasease I beg to differ!!

  103. What really helps is taking a small amount of ozonated olive oil that has consistency of petroleum jelly if keep refridgerated and insert into rectum like a suppository. The deeper/ higher up the fistula the more you may have to use, although only a really small amount to lubricate the area and disinfect is probably needed. With each bowel movement may want to cleans that way and helps to keep swelling down and help to heal the area. Softens scar tissue and is anti-inflammatory. Of course with everything, check with your doctor but they only know about drugs and not natural remedies.

  104. Thank you all for sharing your stories. It’s helps a little bit to know I’m not alone, and that perhaps my particular condition is probably not so bad compared to what other poor souls are suffering through. My condition started in June of 2011. I noticed a small, painless lump alongside my tailbone while in the shower. It seemed to suddenly get painful a few weeks later, and I then knew it was an abscess when it made its opening and drained under some pressure from my finger, lower and closer to my anus. I tried antibiotics and packing it through the hole it made but it would not heal. I had the abscess cut out Oct. 1 and the gaping hole left took almost 4 months of packing and sitz baths to finally close, all except for a little red, raw looking spot that persisted at the point where I stopped packing. It turned out to be the opening of a fistula or sinus, I’m still not sure which. My surgeon suggested a plug procedure, but I decided to go to a colorectal specialist and we agreed I could not do anything and just keep an eye on it as it was totally asymptomatic. Well, a couple months later, 14 months after the surgery, I got a boil in a different spot, this time right near my anus. It appeared to be related to the existing problem, and I had fistulotomy on two fistulas, as well as where the boil was being cut and laid open. I see my doctor for the first follow up tomorrow, 10 days post op. My perianal area looks like all torn up — one long continuous, sort of L-shaped deep cut. The pain was never bad enough for narcotics, but the seemingly constant production of pus, blood, and whatever keeps my butt feeling slimey and uncomfortable most of the time. I go back to work in a few days. There will be lots of bathroom trips to cleanup and change pads in my underwear, but hopefully I’ll be all healed up in a couple of months and this will be the end of it. Apparently, some people do have asyptomatic fistulas that never go beyond that, but in my opinion they should be promptly treated to minimize the chance of spreading out and causing more trouble. It’s hard to not feel discouraged sometimes, and hard to imagine ever being “normal” down there again, but one has to keep calm, carry on, and hope for the best.

    • Not sure how helpful this might be but amitrityline is an excellent blocker for nerve pain. Worth asking about if suffering from nerve pain – damaged or repaired nerves.

      • Thanks, Barbara. Fortunately, I didn’t have any severe pain associated with the fistulas, abscesses, or even after both my surgeries. The worst pain came at my post-op appointment, where the doctor put some silver nitrate on parts of my open wound to keep it healing in the proper order. That about sent me through the roof, and was really painful for another couple hours. I have to go back for more of that in two weeks, so I think I’ll bring a bite block! By the way, is that drug you mention go by the brand name elavil?

    • Hi. This site helped with a lot of information, so I thought I might share my surgery experience. I had a perianal abscess from around 2/2011. I did the online self diagnostics – bought creams, heat/cold packs, pills, etc… thinking it was a hemorrhoid or something similar. Finally went to a doctor on 1/7/2013, which was a gastro doctor. This was a mistake – because unless you have a very small hemorrhoid, or something simple, these gastro MD’s are just like Chiropractors; they don’t know how to deal with complicated issues & they simple try to get you in & out so they can get paid by the next patient. The Gastro Doc couldn’t figure out what it was & just prescribed me antibiotics for a week, which did nothing.. I then made an appointment with a Rectal surgeon. The rectal surgeon will do a visual & internal feel diagnostics in their own office. He diagnosed the perianal abscess & said I also had a fistula. He scheduled a perianal abscess & told me he doesn’t know the extent of the fistula until the in office surgery. During the surgery, I was put out completely; when I woke up, I had no pain because of the meds. My surgeon explained that the abscess was drained, but the fistula was going through half of my anal muscle, & he could not cut it open nor use a cutting seton without significant risk. He scheduled an outpatience hospital advancement flap surgery for the fistula. He had inserted a non cutting seton; this was extremely uncomfortable for me the following days. The pain wasn’t that significant from the abscess drainage nor the seton, but again very uncomfortable. He had given me Oxy for the pain, which I was taking 1/2, once a day. I really couldn’t handle the seton (I really feel for those with Crohn’s disease that have to keep the non cutting seton in for months, if not years), so I went back to the surgeon & even though I was supposed to have the seton in place for 4 weeks before the advancement flap, he moved up the surgery to only 10 days after the seton insertion. I had the advancement flap surgery on 1/28/2013. I was an outpatient, & I was put under during the surgery. Surgery was about an hour I believe. I was put in the recovery room for about 4 hours (I couldn’t walk for 3 hours after because of the meds – my legs were jello). Doctor said the surgery went well. Afterwards, I was discharged & in minimal pain since I still had plenty of meds in me. He prescribed Oxy 10mg. I took a bath that same night with the help of my GF & removed all of the tape, bandage & dried blood. Again, pain was minimal, but looking into the mirror, it was ugly. Went to sleep & woke up with some pain. Took the Oxy 10mg in the morning then passed out again.
      I don’t want to scare anyone, but I think it is important for whomever is getting this surgery to know what may come after & to know that it does eventually get much better.
      I taken the week off of work because my doctor told me I would be in “some” pain & I should. I am a healthy 38 year old & in shape. I always though (& I do) that I have a high tolerance for pain. With the coming days, starting the next night after the surgery, I started experiencing excruciating pain that I have never experienced before. I was popping the 10mg oxy 6 times a day (max on the label) & the pain would not stop. I ended up calling my surgeon two days later & he prescribed the 20mg Oxy & told me I can take 10 a day. The severe pain continued for the next 6 to 7 days after the surgery. It is important for you to know that the pain did subside a bit the week after – I wish I knew that because I really thought there was something wrong, although I had gone in for a post op checkup & the surgeon was telling me everything looked good.
      I was into my 12th day after surgery, & although the pain had subsided somewhat, I was still forced to take the Oxy 20mg three to four times a day (cutting back from 8 a day). Another thing my surgeon had not told me were the side effects of Oxy – if you take it for any period of time (5+ days, at 6 to 8 a day), some people develop shortness of breath. So now I was still in pain, loopy from the Oxy & had a shortness of breath, which is very scary. I ended up forcing myself off of the Oxy on the 13th day after surgery & moving to advil. Within 8 hours, the shortness of disappeared.
      I had a followup with the surgeon once a week, for 4 weeks after the surgery. Each time, even though the abscess had been drained (I could only feel a slight bump), I could really feel the fistula tunnel. My worry was that the inside flap had opened up again, because there was a small bump once in a while where the abscess was drained, similar to before the surgery, but much smaller. My surgeon tried to force any liquids out of the fistula tunnel & the abscess by pressing on both, but he said nothing was coming out (this is after the 2 & 4th week visit), which indicated to him that the surgery was successful. I still had some pain where the abscess was drained, the fistula track & inside, especially after the gym (which I started on week 5) & sitting down at work. Around week 8, the pain was very minimal & around week 12 which is now, the fistula tunnel can barely be felt & I only have minor pain when sitting for 5+ hours. I believe by the end of April 2013, all of the pain will be completely gone.

      So the moral of this very long story is:
      1) Don’t wait to go see a doctor if you feel you have a perianal abscess – the longer you wait, the worst it can get, especially with a fistula. I live in Manhattan, NY with access to thousands of doctors; I go to a dentist (twice a year), my general doctor & dermatologist once a year; because I was embarrassed of the area of my abscess, I put off the visit – which made my fistula much worst.
      2) Go to a rectal surgeon, not a Gastro MD.
      3) Be prepared for the pain after advancement flap surgery. Know that as much pain as you are in, it will get better within a week (significantly better).
      4) Talk to your doctor about Oxy after surgery – if you get shortness of breath, it is directly related to Oxy & you should come off of it asap.
      5) It will take about 2 to 3 months for you to feel normal again (non chron’s). Plan accordingly with family/work/friends/vacation.

      Hope this helps (although I was mumbling through a lot of it with grammer/typos :)

  105. I do believe you are correct – amitriptyline and elavil are one and the same. Only available on prescription here in UK. It is excellent in preventing the nerves from sending messages to the brain. I’m about 4 weeks post op (fistula/seton) and back at work but still need painkillers when I’ve been on my feet too long. Think my Zumba days are over but hoping to get back to swimming eventually. Delaying test for gluten intolerance/celiac because it means reintroducing gluten before the blood test!! Worst effect of all this is I am unable to pick up my granddaughter for more than a couple of minutes!!!!

    • Hi Barbara. Elavil is available by prescription only here in the USA as well. Interesting that it’s used for pain, as I always heard of it being used for depression and other mood disturbances. I do hope that you have a good outcome and are able to get back to Zumba, swimming and, especially, holding your granddaughter for longer than a couple minutes someday soon. Rigorous exercise is the only thing that can lift my mood sometimes. I have had to give up my bicycle riding/racing and am hoping I’ll be able to work my way to running from the long walks I have just been able to start doing. Take care, and best of luck to you in everything.

      • Amitrityline is used in large doses as antidepressant – apparently it’s ability to provide nerve pain blocking is a useful side effect which it is not listed for. It is currently my best friend!!!!

  106. My brother just had oral surgery for fistula & he has no insurance & we had a hard time getting the 2000.00 for it it’s been a month & now he is told he is going to have to have 2nd surgery we don’t have the money & don’t know who to contact to get help with this & he is hurting & really depressed we don’t know what to do thought you could tell us where to go for help

  107. Can anybody give me some advice ?? I had a internal anal abcess in november last year, my dr gave me flagyl and it went on its on, after a month or so i felt something odd so back to my nurse, she said its just tissue from the abcess and will go soon. Then in january again the abcess was back, more flagyl and my dr still said i didnt need to go to hospital. After getting a mri scan, i was told nothing abnormal shown. Then again 6 weeks ago, it was back !! this time i felt unwell, sick and fever. Dr again gave flagyl, but few days after the abcess was getting bigger, of i went to A an E, after blood tests, shown it was in my blood infection and it could be serious ! So my dr after months sent me to hospital for surgery. Turns out the mri scan i had shown a anal fistula!! why hadnt my dr said :( so after surgey, dr came and said i had a huge abcess ! which due to not being drained in november, it became a horseshoe vagina and rectum fistula ! so i now have a seton, with a huge hole :( its been over 2 weeks, and the huge hole seems to be doing well, however on the other side were the seton is, its a small cut, and seems to have a pin size hole that has now started to leak, im worried as to why or how that hole got there, i thought the only drain was coming from the big wound ?? Any ideas would be helpfull ? i really dont want to be put on any more antibiotics :( im sick of feeling unwell after taking them. Also the drainage seems yellow and like glue ! i also have recurrent staph infections so im worried about mrsa ! if there was another infection would there be a smell ? my dosent. I hate having this problem :(

  108. Hi Sarah
    I’m sorry to hear about your experiences. I am not a doctor so I cannot comment with a medical opinion but I have been suffering from peri-anal problems for four years. First of all, which country are you in and what are your options for seeking second opinions?
    My personal experience is that antibiotics are not effective on a very large abcess, and I will not take Flagyl again because the side effects made me very ill. I have had a seton for 18 months and I try to maintain a positive attitude about it. I place a pad of gauze to catch the drainage 24/7, and the consistency and colour of the drainage can vary a lot.
    Your fistula is different to mine, and each person will have a very different problem. I had an excellent surgeon in Johannesburg (South Africa) but the one I had in Westville was dismissive and I ended up going septic (the first sign of going septic is a TERRIBLE smell and that was my worst experience). Wound care is very important with fistulas and abcesses in the anal area, and also cleanliness. Fortunately I had very good wound nurses.
    You need to find out from a medical expert what exactly is happening with the holes you mention. I fully understand why you hate having this problem (I think we all hate it), but it is important to be as positive as possible, get the best advice, eat properly, care for yourself and find a doctor and surgeon that you trust. I wish you all the best :-)

  109. My heart goes out to you, Sarah. I don’t really have any advice on your medical issue, but what has helped me cope with difficult situations with my health (and life) is trying very hard to be grateful for whatever good things there are in my life, to realize I’m not the only one, and that things could be drastically worse. My thoughts and prayers are with you.

  110. Thanks for replys :) i live in england, and the surgen who put the seton, was very good, i think i got the best 1 :) my nurse said he did a good job with it. Im just concernd about mrsa ! as i have recurrent staph infections in my nose and vagina area, so im worrying that the fistula wound will turn in to staph ! my nurse again has given me more flagyl :(( i just dont want to take them, they make me sik and depressed and give me terrible thrush in my mouth. She said shes given them as a precaution. As she saw the yellow discharge, but surely thats normal as that is y we have a seton so it can drain :/ i mean what colour does she expect it be ?? it never smells bad really and i dont get no pain, exept a dull ache like muscle down my leg on the fistula side. I just dont want to go on any more antibiotics, but on the other hand dont want another abcess or infection! i feel ok in myself no fever. The nurse did say yestoday that my wound is healing to fast, and doing somethiing called over granulation of the skin ! so she did somthing to the skin dont no what but its all bruised around it now :( anyway i really hadnt new about anal fistulas or abcess intill recently, and now i cannot believe how many people suffer them! not nice at all. Also i read taking garlic caps high dose can prevent infections. And manuka raw honey can prevent abcess also. Anything must be worth a try :0 )

    • I just had my forth surgery. First was a open hemrroidectomy then another re-do on the hemrroidectomy and cauterization. Then developed a abcess and fistula. Had to have draining setons put in for six weeks then the plan was to put cutting setons in and do a partial internal spinchterotomy (your external sphinchter controls more of the incontinence stuff). When the CRS opened me up the infection tracts were healing well and did not need to put the cutting setons but rather the draining setons. I was pleased. I have had no loss of bowels with the spinchter stuff. I have been doing the sitz baths on the toilet and after a bowel movment I soak in the bath tub and I put 4 drops of OIL of OREGANO in the water. I smell like a fricken pizza, but I then shower after as well. I also change my guaze in between my butt crack on a regular basis. I also am taking the manuka honey and garlic. I also take a stool softner in the am and pm (colase). I am walking 30 minutes every day and would like to start light wt lifting, but I do not want to strain. I am taking pain meds only as needed and take advil (ibuprophen) anti-inflammatories. I also use ice as needed ( you could freeze a hot dog and upt in a plastic bag and put between your cheeks. I initialy purchased a pad to put on my bed for sleeping for drainage after surgery ( about 2 ftx2ft) . I went for a follow up and the CRS did a little surgery in the office. SHe said everything was healing well and took out one seton and put a smaller one on the side that still was infected. ( she did numb the area). I return for another follow up in 4 weeks and hop and pray that this may be it. I can’t wait till this is all over. This is a life changer. Hang in there everyone, it will get better. Stay positive!!
      Suzi Q.

  111. Hi, my name is Shelby I came across this just trying to get information of how long I will have to keep my seton stitch in. I have read many stories on this page and must say I dont feel so alone now knowing that I am not the only one going thru this and with some that I read I consider myself pretty lucky cuz there are some going thru worst then me.

    This all started in dec 2012 I thought i had a hemoroid so I continued to deal with the pain saying to myself it will get better. I am a plebotomist and I am on my feet almost 8 hours and it got hard for me to walk,sit and even lay down and sleep but still i kept telling myself I will get better, but as the days went on I was taking 800 mg ibuprofen and still was in alot of pain. I pushed myself to go to work everyday and finally I called my doctors office and spoke to the nurse and told her what i was going thru she told me to take lots of sitz baths and if I wasnt any better in the next day or two to come in and see dr. Later that day i went to sit down when I was patient free and next thing I know this thing I thought was a hemhroid bursted and instant relief I had. About a week later the pain and knott came back with more pain then ever called my dr office and they told me to come in after work. Dr looked and thats when he said I had a perianal abscess. I have never really thought much about it he said sometimes they will need to be cut and drained but he said he was gonna put me on antibiotics for a week and see if that will work. A week later went back to dr in twice as much pain. He took one look and told his nurse to call hospital see if the OR was open. He then called the hospital to admit me and get me started on IV antibiotics right away and the next day to do surgery to do I & D. I was in hospital for 4 days and was feeling better. Had follow up with dr 2 weeks later in pain again. He admitted back in hospital again cuz he said infection had spread to my soft tissue. I was in hospital for 4 days. Before I left hospital the put a picc line in me so I could do IV antibiotics at home. He put me on IV antibiotics for 4 weeks. Two weeks later I was in alot of pain again went back to dr and he said I have another abscess. Once again he did I & D and felt better. We did blood test and MRI to see if I have crohns. Everything came back negitive for crohns. sp he scheduled me for colonoscopy and endoscopy and still found nothing wrong but found alcers in my stomach and when i woke up out of surgery i woke up with this seton stitch in not knowing that he was going to do that. I have to say sometimes im in alot of pain and some days im pain free. somedays it takes all I have to get out of bed in the morning and go to work. I work in outpatient lab and work by myself and i do about 25 to 40 patients aday and to me thats alot for just one person when I register the patient take their blood too. Every third weekend I work at the hospital and the hospital is 7 floors very large hospital. I walk the hospital and drawn the patients blood in their room so for 8 hours i am walking. by the time 4 hours go by I am almost crawling and in tears from the pain. I deal with the pain and I go to work everyday cuz I cant take time off cuz I have already had to use my sick time and vaction time when I was admitted to the hospital. Dr called me today and has scheduled me surgery may 30th to take seton stitch out and to put a fistula plug in. I dont know much about the plug and dont know what the out come will be as in time to recover or if it is any pain. I sure hope that the plug is gonna end this battle that I am fighting. I some how have adjusted to this miserable life I am living right now never lost faith that I will some day have my life back.

    As I read this page and the stories of everyone fighting this battle my heart goes out to each and everyone. All we can do is keep fighting this battle and never lose faith. God Bless u all and hope we all will recover and have our lives back.

    If any one has any information on the fistula plug please fill me in for I am totally dumb about this.

    Thanks, Shelby

  112. Please try 1 tsp of ghee ( clarified butter) in 50ml warm milk first in the morning and just before bedtime. Have at least 250gm of ghee . you can get this from indian grocery store. the drainage and pus has reduced for many people. my son’s gorebio plug treatment was a failure and plug procedure has only 50 percen chance of success, ghee and milk is helping !!

  113. As a follow-up to my post April 18, 2013 at 4:47 am above. A day after I wrote the post, I had significant swelling were the anal abscess was drained. I was thinking to myself that I spoke too soon about my healing process:) It felt similar to the anal abscess, except it came from nowhere within 24 hours – the anal abscess used to swell over a week period, then pop/drain a little bit, with mostly puss. The swelling I just had was larger & really purple. I was afraid that the inside flap from the advancement flap has failed, & the fistula tunnel had filled with puss again, filling the abscess again with puss.
    However, luckily, it popped overnight while I was sleeping. There was a lot of blood, but no puss, which didn’t make sense to me. I immediately made an appointment with my surgeon. He examined me & said the advancement flap surgery recovery is progressing well & the fistula tunnel is starting to close (getting filled with skin).
    He told me the severe swelling I just experienced is the result of too much exercise by me. When you have surgery, even minor abscess drainage surgery, the skin around that area is thin & takes 6 months to a year to become thick again. If you strain, or do heavy exercise, a blood vessel underneath it can break, then fill that area with blood, which bursts in 48 hours. No infection & has no impact on the fistula nor abscess.

  114. Just signed up for this support forum. I am going to have my 3rd fistula surgery in June. I am a fitness instructor and I find it hard to be off my feet for more than 2 weeks……wondering if that could slow down healing. But then I am reading of people having numerous surgeries even with getting enough rest. Havent had flap surgery yet – I am avoiding it; going to try lift surgery again in June.

  115. Iam now waiting for a mri scan, to see if the fistula has tracked of anywere else ! i pray not. I had another skin swob from the wound were my seton is, and at last my strep infection has gone ! and im sure that thanks to the hibb body wash what kills mrsa, also COLLIDAL SILVER thats a must when you have a wound, spray it on 3 times a day. Im still getting a yellow glue like discharge from the fistula, and do wonder how long the seton will stay in for ?? also manuka honey raw, is good at treating anal abcess and mrsa infections.

    • Well I have gone back to work today after a year and 8 ops in 12 months (13 in total) just hope I last longer than the 6 weeks i managed last time. My surgeon seems optamistic about my recovery i just hope he is right this time. The wound where my last set of setons were removed is still sore and affects walking etc and i still use a shower after every BM rather than loo paper which I think is much kinder to damaged skin. So fingers crossed afer my anus horriblus I am on the mend. Good luck to all my fellow sufferers!

  116. Hi debster, can i ask what type of fistula u had ? i mean 13 opps is alot ! did they keep re infecting ? or was the fistula tracking in other places ?

    • started with a lump in right buttock about 5 years ago which became abcess which wat laid open. Then about 10 months later another one, then about 6 months later and so on. Had several ops for perianal but last 2 have been setons first one was rubber one which I think i was allergic to last one silk not as bad. I am in my 2nd week back at work part-time still very sore from op in march having problems sitting etc. In addition have frozen shoulder from months of leaning on sofa to take pressure of my bum. I am working from home for first month which is ok but dont know how I will cope with bathroom tasks when not able to access a shower after each BM. Good luck with your plight this condition is a pain in the arse!!

  117. Very small fistulas can heal on their own

    I wanna share my experience as when I was looking ard online for information n stories, I didn’t find much.
    Here’s my story-
    Fistulas do heal on their own

    I had my baby in end December 2012. Normal delivery- vacuum assisted and an episiotomy which resulted in a four degree tear. My tear went to the rectum. Within ten days my sutures broke down near the rectum area. My doctor examined me and felt that at that moment in time it was best not to stitch me up again as I already had too many stitches and sometimes it’s best to let things heal on their own. I heaved a sigh of relief because if he had suggested he wanted to stitch me again I think I would have passed out. It was too much for me to deal with. But looking back the wiser decision would have been to close the wound through stitches again. At that time the word ‘fistula’ had not entered my dictionary. I was oblivious to it. The next few months were an ordeal to say the least.

    Every week I had to visit my doctor so he could keep a close eye on the wound. Every time I would go back things were getting worse. I want to add that my gynaecologist is a wonderful man who I would say treats his patients like family. Every time he would take a culture swab of the wound area, the reports would show horrible bacteria of different kinds ( which are present in case of a fistula). He would ask me questions like do I have fecal or wind incontinence etc and my answer would be no and I wondered why he used to ask me all those questions.

    Three months of strong antibiotics and my body couldn’t fight off the bacterias. Every time we would find something new and my wound kept getting deeper. As I was breast feeding, the lack of estrogen made things really bad for me. The lack of estrogen completely dried up my tissues and the healing got prolonged and worse.

    After consulting other senior doctors, my gynaecologist decided it was best to switch back to basic toilet cleaning- sitz baths, cleaning with chlorhexidine solution and antibiotic creams to fight the bacteria.To help the wound in healing I was started on a minimum dose of Premarin cream- conjugated estrogen to help strengthen the tissues, thereby, helping the wound in healing.

    At last, I thought things looked better and I was on my way to recovering. But I was wrong. Few weeks later I thought I felt wind passing from the vagina- it felt like bubbles of air trapped in between the legs. I would like to mention that right after my delivery I had felt this and also I was passing wind controllably but that got fine after maybe 2 weeks. But why was it happening now. I didn’t know what to make of it so I just thought I will wait and watch. Few days later I had an episode where I noticed faecal matter from the vagina when I wiped after a bowel moments. I just stared at the toilet paper in utter disbelief. Few days back I had read about fistulas and there symptoms. I thought I would just die. After 3 months just when I thought I was healing things were actually getting much worse. I could not stop crying. Only those who have been through this know what it is like.

    I called my doctor and made an appointment. Upon clinical examination my doctor could not see a fistula opening. But my symtoms suggested the presence of one- wind passing from front and of course the faecal matter coming from the vagina.

    My doctor explained that he was worried this might happen when my sutures broke down and the wound was not healing and the bacteria which the culture reports showed week after week were suggestive of a fistula. But I was not showing any symtoms plus every time he would examine me he could not see anything out of the ordinary.

    My first question was if this could have been avoided if he had decided to close the wound again when it broke down 3 months back. He admitted that it could have been avoided but there was no guarantee that we could ha e avoided the fistula. I had do my homework and read up a lot on fistulas and I knew he was right. I drew comfort from the fact that atleast he did not deny the possibility of avoiding this had he insisted on closing the wound again through sutures right at the beginning. This was the sign of a good honest and since doctor. I was sure once again that I was in good hands.

    We were told that if such incidents of faecal matter seeping from the vagina continue and the doctor is not able to see any opening upon clinical examinations then the way forward way to go ahead with an exploratory surgery- where the doctor along with a colo-rectal surgeon would examine me under general anesthesia- trying to look for a fistulous tract. If they find it they will close it. Here was the challenging part- closing the fistula wasn’t as easy as it sounded. It meant closing the tract by putting layers of tissues on it. The new tissues would have been taken from the surrounding perineal area which implied that the whole area would feel tighter. Once the tissues were layered in then the doctor would have to perform a pelvic reconstructive surgery- building all the pelvic muscles again. This was horrifying to me. My perineum area had already gone through so much from the fourth degree tear and was still healing and just the thought of going through it again was excruciatingly disturbing. I couldn’t bring myself to agree to this if the need arose.

    My doctor and husband were both so wonderful. Supported me soo much and told me to try not to think about it just yet.

    A month passed by and no more episodes. The wind issues had resolved. My wound was healing and I honestly felt so much better.

    Than it happened again. I had another episode and it felt like my world came crashing down. Why why why was it happening again. It had been 4 months post delivery and I was still having complications. The clinical examination once again did not show anything. My doctor suggested our best bet would be to get an anal MRI done. These MRI’s are 98% accurate.

    My doctor went through my MRI reports with a colo- rectal surgeon and they could not see any fistulous tract. It was like a miracle. Because I was having more of those episodes, I was sure there was a fistula.

    Both the doctors were of the opinion that there is no fistula as it did not show up in the MRI. But because I had few incidents- which were also not very regularly. They were quite random- months and weeks apart- it suggested that the fistula was very very small for those incidents to not occur regularly and for the MRI reports to come normal. My vaginal discharge was also regular, clear, clean smelling. In case of a bigger fistula the discharge is also contaminated and foul smelling.

    The colo- rectal surgeon was of the opinion that if there is a fistula then it is very small and such OCCULT fistulas do heal on their own so we should just wait and watch. In case, I experienced the episodes again and if they were quite regular then the colo- rectal surgeon suggested a relatively simpler procedure which was to go in from the bladder and build few layers of tissues on the wound so that every time there is pressure from the rectum the layers of tissue press against the wound and help in closing the fistula.

    My wound is still healing- it has closed considerably but still a bit is left. It has been an extremely slow healing/ recovery process but I am glad it is closing.

    I wanted to share my experience with everyone who has encountered or rather encountering a fistula. I know what it means and what an impact it can have on one mentally and physically.
    I had read that there is only a very small possibility of fistulas healing on their own and in most cases they do not heal on their own. But here I am a living example. It has been 5 months post delivery, I’m still recovering but the key word here is recovering! Yes, atleast I am recovering.

    I hope and sincerely pray that no one has to go through this ever.

    I am taking stringent perineal cleaning measures to ward off infections and help the wound in closing faster through potassium sitz baths and cleaning the area with chlorhexidine; taking laxatives to keep the stools soft and going to the toilet at around the same time everyday to have a BM- this I think helped me in resolving incontinence issues- which I felt a bit post delivery.

    I would be happy to answer any questions which you may have.

    • What an incredible story and what a brave person you are! Thank you for sharing your story and I hope it will give others the message that one should never give up! I started with a peri-anal fistula 4 years ago and have had 5 operations since then. At the moment I have a nylon seton which has been in for 9 months and I had another thicker seton in for a year before that. The fistula journey has been very challenging for me too and is still ongoing. You are an inspiration! Bless those who have supported you through all of this, and I pray for a complete recovery for you (and for me!). Once again, thanks so much to the person who started this website – it has been a lifesaver for me. Fistula issues are not something we can easily share with others, and only those who have been through it themselves can truly understand :-)

      • Hi Diana, thank you for your kind words. I must add that what im going through is probably nothing compared to what you have been through in the last few years and still fighting it.
        It definitely helps reading about others experiences. After I read other people’s stories on this site it gave me that ‘I’m not alone’ kinda feeling. Because fistulas are such a shunned topic one doesn’t get to know much about it and you end up thinking that not people are suffering from it. These blogs and websites provide tremendous support and help to people like us.
        I sincerely hope and pray that this ordel ends for all of us in a healthy recovery and that no one else has to go through it ever. It affects your state of mind like nothing else.
        I pray for your speedy recovery Diana.

  118. 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

  119. Jane….I had a seton for about 6 months and was on antibiotics . The Doc then performed a flap surgery. At first I thought I was worst and would have to go back for a seton. Sitz baths 4-6 times a day…..while at work was difficult,,, but worth it!!!! I have been healthy the last three months. Take it easy and follow the Docs orders and it will get better!

  120. Hi everyone, this has been a very helpfull site, I just would like to find out which hospital in JHB SA can preform a fistulectomy? We do not have medical and would like to know who I should go to as the previous state hospital could not help me out.

  121. Hi Chanelle,

    I don’t know where you can go, as I’m in California. However, I think it’s very important that you find a colo-rectal specialist if at all possible. You want as surgeon that knows how to treat a fistula without cutting the muscle that gives you bowel control. Take care, and best of luck to you.

  122. Hi all,

    This is my first post on ANY website about my fistula. It turns out I have a fistula and a perianal abcess, one on each butt cheek. I had a setone placed in last week through my fistula. Surgeon is hoping that the abcess will drain out from the seton. I am not sure how long this setone will be in here for?

    Any help? My surgeon said not to do sit baths. Is that true?

    I am trying my best to keep in hygenic. Help/advice please.

    RG

  123. UPDATE: This may be premature but So far with my experience i may be finding that this type of issue is a deep seated injury for body that requires time to heal on it’s own for some. I think the more i try and do surgeries and create a bigger hole, and more inflammation the more i get set back.

    At first, leaving it alone did improve considerably but never completely healed. I’ve also heard people going to ten years or more never resolving or fulling healing while others have in less the a year or 6 months. I believe some people heal faster while others are challenged in healing.

    This time around, I added some raw milk and used 1/2 tsp of baking soda 2x daily on empty stomach to my regimen with some breaks and found my fistula actually healing!! Getting smaller and seems to dry up and not flare up as much. At first i tried not to aggravate it or touch it, and would hold the area if have to pass gas and kind of pinch it so it wouldn’t pass through the wrong hole. I believe the later is ok to do if you can, but the first part of not aggravating…. well, i think differently now.

    Since it’s not as painful and doesn’t flare up as much i’ve actually pinched it and i’m really sensitive when it comes to even looking or touching it and wouldn’t even think of doing this when it was really inflamed and much larger, wasn’t possible, but now I kind of pinch it rather hard and roll the skin around between my fingers firmly so as to drain it and aggravate the scar tissue to stimulate healing, fresh cut and body recognizes it needs to heal it.

    That’s how i think of it now, like if channel forms and scars and tunnel exists will never heal, but if break up scar tissue, like when Dr. irrigates it with peroxide, and then infuses or injects it with ozonated olive oil, can get it to stay soft and heal together. Unfortunately I haven’t found a Dr. to do that yet. So far so good with the new approach though. Don’t even think about it now, but i never get my hopes up, one sneeze in past and the whole process started all over again, and i won’t ever let that get to me now cause half the battle is how you react and respond to it. You can let it get to you or ignore it, when it’s possible to ignore, otherwise need to accept it’s something you have to get through and just part of the process.

    I now feel it itching and i take that as a sign that it’s healing. It is getting much smaller and less irritating as time goes by and I think the biggest keys are ACCEPTING HAVE A LONG TERM HEALING SITUATION AND NOT EXPECTING ANYTHING LESS OTHERWISE WILL JUST FRUSTRATE YOURSELF, AND TWO, HAVE TO CREATE CONDITIONS IN BODY TO BE ABLE TO HEAL TISSUE WHICH INVOLVES DIET AND POSSIBLY SOME SUPPLEMENTATION.

    I’m sure diabetics, or poor circulatioin or acidic bodies where may have to create a more alkaline body may be required for your body to have the ability to heal that area. I think possibly a baking soda and apple cider vinegar bath for my butt is what i’ll be doing to help soften the tissue, disinfect and give it the ability to heal while i try and do the same thing internally.

    Good Luck to all of us, this is quite the challenging condition when we are not given proper treatments and need to figure this out on our own. Test of temperance, resolve and patience !! I wish you all luck on this journey, i’m sure there’s more then one answer and i’m sure there’s also a simple one out there somewhere. Maybe i’ve stumbled across something here, will have to update again soon and thank you for this site to share and know we are not alone.

  124. Very interesting…. my fistula is just coasting….not flared up but not healing either. I think one can get stabilized in this matter but reality is …it is still there. The root of the fistula needs to be closed so as not to have fecal matter pass through anymore. I think having good digestive aids can keep things quiet. Raw milk can encourages a healthy digestive tract (if tolerated well)therefore limiting excessive gas etc. Keeping the body alkaline I suppose is the purpose of the baking soda? I think we need to do all we can do to avoid flare up – but still press on with surgery.

    • Mine coasted for a while, until it made a new track and formed another abscess and fistula. I had surgery Feb. 26. The wound took a full 12 weeks to close and so far it seems OK — no evidence of any fistulas or abscesses. I followed a strict regimen of exercise (jogging), daily sitz baths, good bm hygiene, and a diet comprising simple, healthy foods.

  125. I saw a colorectal surgeon for a fistula that had developed after surgery for a perirectal abscess, about 8 months after I noticed the fistula. Since it was asymptomatic, I told her that I’d like to leave it alone. She said that was a reasonable decision because there are supposedly lot of people that have them for many years without complications. I just didn’t want another surgery either; the first one required twice daily packing with cotton strip, which thank God I was able to do myself with the help of a full-length mirror! That part took 16 weeks, at which point there was this little red dot remaining at the spot where I had stopped packing — the fistula. Well, fast forward to December 2012: I noticed a lump near my anus, but on the other side and lower than the first abscess had been. It turns out that fistula had formed a new track and started that new abscess. I tried to let it heal for two months, but despite a little improvement initially, it was obvious it wasn’t going to heal on its own. I had fistulotomy surgery Feb. 26 and was left with a couple deep cuts that my doctor had left open, of course, to heal from the inside out. Good news this time is that I didn’t have to pack it, just a routine of daily sitz baths and hopping in the shower after each bowel movement. It has almost completely healed at this point, without any obvious signs of a residual fistula. I just hope and pray this will be the end of health issues like this for me. I thank all of you for your input to this site, and wish you all the best in resolving your fistula troubles too.

  126. I have had my surgery about two month ago everything is ok but it is discharging slightly from the inner side of my anus and have a slight bad smell. Is it ok? Or how long day it will discharge. I am in tension. Please help me?

    • Dear Yeam it depends on what surgery you had. I had 2 lots of setons and they drain all the time until taken out so what you are expereincing is not unusual. Having had 13 operations for this horrid condition I can sympathise with your plight,
      I have just gone back to work after being off for a year having had 8 ops in 12 months I know your pain.
      The only thing I am really struggling with is the bathroom end of things. The only method I can use after a bowle movement is to use a shower to clean myself as using paper really hurts and leaves me feeling so itchey I cant think of anything other than the fact I feel I have nettles growing inside my bum!!
      Is anyone else in this situation? I had the last lot of setons out in March and the pain has gone but the itching and the fact I still need to use dressings all the time to keep dry is driving me potty.
      Any adive? I tried using those loo papers which are like wet wipes but that felt like putting acid on my skin even though they are desinged for babies!
      Good luck one and all with your recoveries hopefully we will get our lives back one day soon!

      • Hi Yeam and Debster
        I’ve had setons in continuously for nearly 2 years, and I think my fistula is too deep to heal. The fistula drains all day and all night, and I use a piece of cotton gauze to soak up the drainage. I change the gauze regularly, and the drainage varies a lot. I also found that wet wipes are too harsh for “cleaning up”, even though they are for babies! I try to time bowel movements to happen before my daily bath, and I use coarse salt in the bath. Knowing that I am not the only one with these issues has helped a lot, so thanks to everyone for your contributions to this website :-)

  127. I developed a method for dealing with bowel movements while at work, or at home if I didn’t want to shower afterward. I fill a plastic, squeezable, 24oz bottle (the kind cyclists use to carry water on their bikes) with warm water and wash my rear end into the toilet while squatting over it. I then use a cotton towel to pat myself dry. It takes just a little practice to perfect, and works extremely well. Good luck, all.
    KC

  128. I’ve just found this site and its been so interesting to read other people stories and to finally feel that I’m not alone in this saga.

    Here’s my story…
    October 2011 … I developed a small lump in my perianal area which gradually got bigger over a few days to the point I couldn’t sit down. I went to out of hrs doc (I’m in UK) and was told I had an abscess and given painkillers and told if no improvement in 48hrs then to go to own Gp as it might need lanced.
    Next day the pain was so bad … I made it into work but was sent home at midday and went straight to A+E where I was told would need surgery. I was to come back the next morning. I had excision and drainage under GA and spent 5 days in hospital as had a very nasty infection and was on IV antibiotics.
    The wound was getting packed daily which was agony but eventually healed up.

    March 2012 … Again felt small round area at wound site and struggling to sit. This burst by itself overnight and Gp prescribed antibiotics and was referred back to consultant. Over next few months constant discharge and pain from wound site. Eventually seen surgeon and was booked in for EUA. Results disappointing as they apparently couldn’t see anything worth noticing. MRI scan was organised – by this time it’s now October 2012. Scan confirmed fistula and it crossed over the muscle so laying open would not work. Booked in for another EUA in November and had placement of seton. Initially some discomfort and lots of discharge but over the next few months pain began to increase and I went back to surgeon in feb who agreed to another EUA. I had this done and they done nothing just left the seton in place but he didn’t come and see me after to explain why nothing had been done. I was furious and complained and his secretary got me a quick clinic appt where he said he couldn’t lay it open and would now look into alternative procedures such as fibrin glue or a plug which have low success rates. I’m so desperate that I will give anything a try! In between times I had been to my Gp to request a 2nd opinion.

    Fast forward May 2013 … No news from original consultant but I meet with 2nd opinion who agrees to try the fibrin glue. 6 days ago I went in for the procedure under GA and wake up in so much pain. Turns out he was able to perform a fistulectomy and put in a 2nd seton and is confident everything will heal in 3 mths!

    At the moment I’m day 6 post op and I went back to work on the Friday and Sunday nights. I’m a nurse and working for an agency so no sick pay for me and I can’t afford to not work. I’m having daily packing and I’m in agony and was started on metronidazole last night by my Gp as she felt the wound was looking infected. I have been in agony. I had been doing sitz baths but the wound was stinging like hell. BM’s haven’t been too bad as wound isn’t near the anus but peeing is hard as trying to keep the wound dry and stop it stinging. I’m taking co-codamol and brufen and lactulose as first time round i became very constipated.

    Things are difficult between me and my bf as sex life is non existent and he doesn’t understand how this impacts on me.

    I just feel so low just now, I need to go back to work on Friday and hope the antibiotics have kicked in by then to stop the awful burning pain.

    Thanks for reading and apologies for the long post xx

  129. Hi nikki
    There are times when this can get you down and it seems that no one understands and there is no end to the pain – it does get better and sometimes when you least expect you will turn a corner.
    I am also in the uk and was told that my stoicism was my undoing and I needed to voice more when I need help!! I have two lovely GP ‘s who have also been very accessible – I cannot take co-codamol and as the pain appeared to be nerve based have tried amitriptyline with paracetamol and ibuprofen – a superb combination and ensures a good night sleep. Amitriptyline made me a little confused the following day but while the pain levels were high and constant it was a price I was happy to pay. I am now only in pain occasionally throughout the day (rather than constant) and am trying a gabapentin paracetamol and ibuprofen combination – still working on this.

    I don’t feel the need to lock myself in the toilet to cry anymore and this forum helps me to realise that I am not alone – I am also very lucky to have a fantastic husband and a lovely family. A new grandchild helps me focus on the good things in life.

    You will wake up one day and find your problems are all behind you (pun intended) and talk to someone when you feel low – do not suffer alone – it gets better.

    Hope you are able to talk to your bf – share your fears with him, help him to understand your problem better – give him the opportunity to be strong for you. It’s times like these that can cement relationships.

    Wishing you well

    Barbs

    • Thank you for the reply Barbs.

      Today has started off quite well, took my dressing off and managed a sitz bath without too much trouble. Just waiting for district nurse to come out and do my dressing, dreading it!!

      Hopefully this is the antibiotics kicking in and starting to do their job!!

      Day 7 … Hope it continues well!!

  130. WOW what a difference!!
    Ok, I may be speaking the obvious here, but here are some of my points…

    IF you keep the injury open and draining, at first that is ok, but if left that way, how can it close and heal if your forcing it to stay open with setons for example.

    I know if it closes it forms a cyst which is painful, but that is only because it gets RE-INFECTED from a bowel movement. Could we prevent the infection and subsequent swelling by using an antibiotic ointment to clean area and keep antibiotic present to prevent the swelling and re-opening of the wound so that it can actually HEAL. I’ve heard people succeed in this regard.

    I had to take an antibiotic and it helped the fistula tremendously until it wore off, can’t be on antibiotics forever. but a local ointment seems to work for some to FULLY HEAL their fistulas!!!

    So that’s my next attempt. I’ve been doing well applying Ozonated Olive oil after each Bowel Movement and it no longer affects the quality of my life, just want a complete healing and put this behind me. I hope others try the same and can get out of this, maybe the answer is simple. LOCAL ANTIBIOTIC AFTER EACH BM AND NEVER MISS ONE, ALLOW IT TO HEAL !!! Could it be this simple to overcome all these hardships, struggles, frustrations and doctors?

    Mike

    • My understanding of the seton I have is that over the next 3 mths it will slowly cut through the rest of the fistula that wasn’t able to be cut out and will then either fall out or the surgeon will take it out leaving the tract to heal completely.

      I really hope this is the case!

    • Mike, I agree with your logic. I left hospital after my abcess was lanced and was given no ointment, sitz bath let alone any instructions on how do keep area clean after BMs! My instinct was to have showers after each BM but that does not provide the area 100% clean. So I went to the GP and demanded a local ointment. Applying the ointment has been successful and I have found that when I forget to apply I know about it by feeling that there is the elements of infection starting to play.
      The pharmacist though did say that I should only apply ointment for 10 days twice a day. Dont know why only 10 days?

      Is there anybody out there that has not had a recurring problem after the first abcess drainage operation?

      JP

  131. Thanks for this website and for telling your story! It really helps to read about other people having the same problems you have. You never hear anyone talk about it, while it isn’t that rare.. So you think you’re on your own, while being so embarrased you have to wear sanitary towels every day because you have two pus, wound fluid and blood leaking wounds in your ass..

    Hopefully you’re doing better by now!

    In two weeks is my big day: stem cell therapy as part of an international phase III research. So my wounds will be closed for at least a while! (they will inject a fibric glue, with or without stem cells, 50/50 chance)

    Greets from The Netherlands.

  132. I can relate to you your story completely.

  133. It’s so important that people share their experiences with each other. :) Thanks for sharing your story. It’s extremely appreciated and helpful. Thanks.

  134. Hello all. So, I thought I’d share my story, since all of you have been brave enough to do it to help people like me! I’m a 28 year old mother of two young children ages 3.5 and 9 months. I was working an “as needed” position as a nurse at a retirement home when I worked 5 consecutive days in a row to fill in for one of the lpn’s going on vacation. There was so much work to be done that I had to forgo my lunch break all 5 days, and I wasn’t drinking enough water. Well, needless to say I got rather backed up, and some hard stool got stuck in my rectum. A piece of it lodged itself in one of my anal glands and an abscess formed. For some reason, I didn’t realize at the time that an abscess could occur in the perineum, so I ignored it for awhile. I finally went to my Dr. and she did an incision and drainage. 3 days later, on my 26th birthday, I believe.. I went back and they thought they should cut it open again because I wasn’t sure if they got all the pus. So, the second time she did this incision and drainage, it caused a fistula, except, she put me on round after round of antibiotics because my doctor didn’t believe I had a fistula, but instead just a reoccurring abscess. Well, finally I sought out a second opinion. I went straight to a colon/rectal surgeon, and sure enough, I have a rectal fistula. Mine is complex. It runs from the left side of my perineum to about an inch inside my rectum. They placed a draining seton at the end of 2011, and I was scheduled to have the protein plug placed with hemorrhoidal tissue to close both ends, but then I found out on January 18th that I was pregnant with my second child. Boy, did I plan that just right, huh? It was a blessing in disguise though, because I really wanted my children closer together, and my husband wasn’t sure he even wanted a second child, but then bingo.. we got ourselves a handsome boy! Anyhow, I waited for him to be 7 months old and somewhat established on solids before attempting to pump enough break milk to have this surgery done. I went in for another consultation, and he simply asked me if I was ready to get this thing fixed, and we didn’t really talk about the procedure. So, after my surgery, and having all this yellow mucus type drainage, I was thinking this protein plug had dislodged, and or it was extremely infected, so I freaked out and called the office. Well, I think they thought I was nuts, because it turns out they didn’t do the protein plug on me at all. They did the LIFT procedure, somewhat against my will, considering the fact that my doc told me all the details about this plug, and whatnot. So, at first I was angry, but relieved at the same time, because I was trying to be very careful not lifting my children and then I realized that I could lift them still. So, we increased my sitz baths in the tub, since I had not bought a portable on yet, and the infection went away after being on Keflex, Flagyl and finally Augmentin. Then, he said it looked like it was healing, and I thought I had this in the bag! Nope! Not the case! The outside healed, but the fistula track was still there, so gastric juice or infection ate through the healed skin and formed an abscess, but the pus had no where to go, so it formed another opening. At least, that’s what it looks like! So, now.. here I am, with either two completely separate fistulas, or one fistula with two outside openings, and we’re going in tomorrow morning for my second draining seton placement. I’m trying not to be discouraged, but it really is hard, considering how it all started, trying to make a little extra money working here and there with a young child. Now we’ve spent all that I ever made and then some trying to fix this problem. On top of all this, I developed arthritis in my hands, wrists, both knees, and ankles, and feet. I have swelling in my knees, and stiffness in my hands and feet every morning. They ran some tests to eliminate the possibility of RA, and my primary care doctor thinks I might have IBD, so on the 31st of this month I go in to see a gastroenterologist. I’ve been to one 5 years ago and my colonoscopy was normal. So, I’m not quite sure if this IBD could develop that quickly or not. I just want to know why I’m having all this arthritic pain at such a young age! I feel like I’m 28 going on disabled! So, currently I’m doing the stay at home Mom gig, which basically makes me feel like I totally wasted my college degree, so I’d like this to work out so that I could return back to work without feeling that burning drainage whenever I’m on my feet for long periods of time. Not to mention, that this sort of thing really kills your sex life. After the fistula, the pain from drainage, the second degree tear from having my second child, and getting bladder infections because it’s difficult to stay clean down there, it just kills your libido. I want to satisfy my husband though.. it’s just hard to get in the mood when you have to clean before and after and then pop a Macrobid in your mouth to ward off the bacteria! I asked my doctor if I could do the cutting seton that I’ve read about on here, and he said that that was a last resort, because those cause involuntary drainage. It just feels like they want to do the surgery over and over again without results just to get their money! When does it end! Anyway, thanks for sharing everyone! Praying for you!

  135. I was diagnosed with Crohn’s in 1984 and had a perianal abscess in 85 that was operated on and I was fine for many years I had a fistula come and go then in 2007 had another fistula form, had a seton in March 07 then replaced in May 07 where they sliced through my sphincter muscle, horrendous leakage through vagina for 2 years and wind would just escape without warning very offensive and became quite reclusive. Switched hospitals and went in for a repair in sept 09 I was so excited as I thought I was finally going to be fixed but bowel perforated and woke up in ICU with an ileostomy, have had several ops since but leaking through vagina came back July 11 and managed somehow as I really did not want any mire surgery but May it became unmanageable and left my job (worked through all this started 07) I had a fistula repair 29th July but really struggling with the pain stinging and pressure type of pain and wish I had never had it, if this does not work will have proctectomy. Just wondered if anyone can tell me when this pain will pass don’t think I can take much more. xx

    • Hi Sonya, what an ordeal you’ve been through, you poor thing, and over such a long period of time too. I have my fingers and toes crossed for you now for the surgery you’ve just been through. If you had the surgery on the 29th, it hasn’t even been two weeks yet… give yourself time to heal… it’s normal to be painful, but do you have the right pain medication? I remember feeling bad pain for about 3 weeks and then moderate but manageable for about 6 weeks. Take it easy and rest up, hope you’re feeling tip top very soon xx

  136. I am literally at breaking point now…I’ve had a fistula for almost 4 years now, I have tried sections, plugs and they’ve layed it open. I have also undergone a stem cell transplant for Crohns which was supposed to help the fistula heal too but nothing happened! I have been with my partner 5 years and 4 of them our sex life have been minimal…I’m surprised he’s stuck around tbh! I’m 27 now n we want to start a family but this is not looking hopeful as we hardly have intercourse due to pain…also I don’t like him coming anywhere near me! I’m normally very positive and don’t let it get to me but after years of struggling with the crowns n 1 thing after the other I am starting to feel depressed. I would love some1 to be able to tell me there is something out there that will help or heal this fistula as I need some hope! I’m sorry for sounding like a downer I don’t normally dwell or talk about my feelings but the thought of not being able to start a family is the icing on the cake and its killing me! I have no idea what else to do x

    • Hi Amy, first of all… sounds like you have an awesome partner! It’s so great that you have someone very supportive. It sounds like you’ve had such a rough time. I’m not sure what you’ve tried and what you haven’t tried. But for me, I didn’t start getting better until I completely changed my whole lifestyle and diet. Have you tried a really basic diet, no alcohol etc etc? I know it’s difficult, but don’t give up!! Have you had the same surgeon for all your procedures? Perhaps you could look at getting a second or third opinion? You will be able to start a family, don’t worry. I thought I wouldn’t be able to have a child, but I did get better, and I had a baby 6 months ago, by c section. You could start a family now if you wanted to, you’d just need to talk to your surgeon about managing the pain better so you can lead a normal lifestyle. So have you got a seton in at the moment?
      Like I said, I don’t want to tell you to do things that you’ve already tried. But I only started getting better when I changed everything I ate, started doing light walking every day, was incredibly vigilant with cleanliness so that I stopped getting infections, and if I did get infections, I would go on to antibiotics straight away. The biggest catalyst for me was diet, I stopped eating dairy, gluten, sugar and wheat, and my fistula started to ‘dry up’ and the tissue became healthy, because my bowels were healthy.
      I know it’s much harder if you have crohns. I guess you just need to make a plan of managing everything as best you can, with pain relief, diet etc etc.
      I’m sorry you’re feeling like you’ve had enough, I’m not surprised at all, it’s a lot to go through, and no one really understands unless they’ve been there. But stay strong and don’t give up, you’ll get better, and you’re still very young so plenty of time for babies! I’m 35 :)
      Let us know how you get on! x

    • Hi Amy – I have Vasculitis ( an autoimmune disease that attacks the bloodstream, which means my whole body) in addition to having Crohn’s disease. Before I even knew I had either disease – they were uncomfortable but manageable – I was blessed to have a bunch of kids during that time. The docs told me that the form of Vasculitis I have leaves most women infertile & completely unable to get pregnant – definitely not my case :) So sometimes reality can be different for different people at different times in their lives.
      My diseases have taught me that I do have to unfortunately give up some parts of my life that I just simply can no longer do. But there are other parts of my life where I can do things but just not the same way I used to do them. I learned to be more creative & look at things in a different light & it has taught me to appreciate all the things I can do.
      Having said that -
      I think that you may be able to have a family but maybe not the way you are thinking. Maybe you can adopt one (or however many you want!) child now & then have your own in a year or two, when you’re feeling better. My sister just adopted a beautiful baby boy & we are so happy she did. He is truly a part of our family & my kids are so happy to have a new cousin.

      Another option is to work closely with a great ob-gyne & work out a plan that works well for you & your partner. Maybe you can get pregnant but maybe a c-section would be a better option for you in order to reduce the pain? But you need someone who is very educated about fistulas because you definitely don’t want to make it worse. Talk closely with him or her & see all your options – you might have more than you think & maybe you don’t have to wait until the fistula completely heals.

      Lastly, consider some “natural” methods in addition to everything you are already doing – sitz baths, antibiotic ointments, various vitamins & supplements, natural medicines, altering your diet, acupuncture, etc.

      Maybe a combo of all the above with all the great things you are already doing might help. I do have to say that stress does make it worse. If you can find some time for yourself or maybe go on a nice day trip with you & your partner to spend some quality time together might help in some way.

      Lastly, it sounds like you’re in a whole lotta pain & that can really get you down! I don’t know if you have a good doc who understands the level of pain you are having? Also not sure if you see a pain management dr? It really changed my life when I incorporated all the necessary medical routes, the right pain medication, ways to relax & integrative medicine. Still don’t have a cure for me but am keeping my fingers crossed – hope it might help you in some way. Please keep me posted!

  137. Hi Amy
    I am 56 and have had a seton in for several years. I agree wholeheartedly with the response above regarding diet, etc. Yes, it is very difficult to follow the eating plan which is recommended for people suffering with bowel problems of any kind, but it is definitely worth it. I felt like a million dollars when I went off dairy, gluten, sugar, wheat and fried foods! My bowels became regular after being “stuck” for 25 years! Some people respond well to 2 foods which assist bowel health – dried Turkish apricots (malatyas) or steamed beetroot (not pickled!).
    I worked at a fertility clinic last year and I know how people feel about challenges to falling pregnancy. I did not have a seton in when I had children over 30 years ago, but I don’t think that my seton would prevent me from having a baby if I wanted one now.
    There are other things that prevent pregnancy which are more difficult to deal with than a fistula. With the above advice about diet, cleanliness, etc, you should be able to go through pregnancy. Just be sure to check with your gynae or doctor about any medications you need to take during pregnancy.
    Find good practitioners – they are worth their weight in gold! We all understand exactly how you feel about being at breaking point, but don’t give up, Amy! Keep us posted – I will be holding thumbs for you! :-)

    • Hi Diana,

      I saw in your comments that you are from SA. I am as well. I wish there was some kind of local support group or info resource to guide a person dealing with this condition. Where in SA are you based? I was wondering who your surgeon is? I am also in the medical field but even so I have been having difficulty identifying a good colorectal surgeon here in jhb. I had a perianal abscess about 8 yrs ago and thought I was done once i survived it. Then it returned this year and I had a second i&d a few months ago. Now another has developed at the site of my scar tissue which makes me suspect that I’m developing a fistula. I do not want to waste time consulting with general surgeons and possibly worsening the problem long term so I’m trying to bear the pain til I consult with a gastroenterologist next week. I want to rule out the possibility of crohns and hope the gastroenterologist can refer me to an appropriate colorectal surgeon. I am 30 yrs old..also in a new relationship..this can be a spirit breaking condition to deal with. I am praying that I will be one of the lucky ones with minimal complications.

      • Thanks for asking for my comments. I can only give u my personal experiences and what I have gained from this website. I am now living in Kloof in KZN. The surgeon who has been treating me in Joburg is Dr Mel Karlsson at Morningside Clinic. If u do see him, tell him u got my name from this site (Diana Cairns). In my opinion, he is an outstanding general surgeon and I will fly 2 Jhb to see him rather than trust someone else. U might need to see the gastroenterologist to find out about Crohns etc? However I have seen Dr Karlsson over a time frame of 10 years and he is familiar with all stomach conditions. My best advice is to see someone as soon as possible. I found that most GP’s are not really able to deal with these conditions and a scope is usually needed. Not sure if he is still practising, but a good GP/Family Physician for piles is Dr Richard Brink in Bryanston. He has high fees because he is so good. Good luck! Let us know how it goes. Diana

  138. Hi
    I have had surgery about over a month ago on my bum cheek, I had ischiorectal abscess and they drained this out, I used to have my dressings changed and then have a packing put inside the open wound as well. My nurse then said that she would need to burn the top layer of the skin so as to leave it open to go through the healing process, Then after three applications she said there was no need to do anymore as this is healed fully, I was very glad as this meant I could now move on forward and start work(I had been off for 7 weeks without SSP) so you can only imagine how elated I was! It has been about 4 days since I started work and about a week and a half since my last dressing. But yesterday I was taken into A&E because my wound had two tiny spots on it and was seeping fresh blood, then suddenly the spots starting flowing freely with fresh blood, the nurses at the hospital were confused as to what was happening because they couldn’t see if there was any other discolouration coming out they then put dressings on and gave me some more and said that it doesn’t seem to be an infection but also that I shouldnt be bleeding. Leaving me very confused! I was then told to rest until it isn’t fully healed and should see my GP about this, I am still bleeding but its not much than what it was yesterday also now I am getting a sticky sort of thing happening but its like pale blood! I was wondering if anybody has experienced this sand what did they do?
    Thanks
    Ash

  139. Hi, thanks for your replies and words of comfort! I know everyone on this page is dealing with the same thing so would firstly like to apologise for sounding so down… Like I said I’m not normally like this and feel embarrassed that I’ve joined the forum. I wish u all the very best with your treatments and I got my fingers and toes crossed that 1 day there will be an incredible treatment/cure. X

  140. Hi

    It is with some comfort and tears that i read these stories, at least i know now i am not alone. My hell ride as i now call it started approximately 3 years ago when i developed a hard lump in my left butt cheek. Over several weeks the lump became bigger and more tender and then it burst. I went to my GP who said i had an abcess and prescribed antibiotics. After a couple of weeks the discharge stopped and all that remained was a small scar but occasionally over the next 8 months i would have a small discharge. I assumed it had finally healed and thought nothing more of it. How wrong i was. Fast forward 19 months and i again i was feeling pain where the scar was located. 4 days later i was in so much pain i could barely walk and sitting was not an option. I went back to my GP who took one look and said you need to go the emergency department and have it surgically lanced. I had surgery the next day and spent a further two days in hospital due to a high temp and low blood pressure. For the next 10 days I had home visits from the district nurse to clean and pack the wound. I returned to work and had another week of visits with the district nurse at the clinic. I had still had mild discomfort when i returned to work but this settled after a couple of weeks and again i thought this has now healed and will not bother me again. 12 months later I again started experiencing pain where the scar was and i started to have a small discharge again. I went back to my GP who referred me back the hospital but by the time I attended the hospital it had settled down. The hospital looked at it and said just keep an eye it. Whilst i dont remember the exact dates of my previous flare ups, May 17 2013 is a day i will not forget. When I woke up in the morning i was feeling quite unwell and I had slight tenderness where the scar was. I stayed home from work and as the day went on and the pain increased I knew exactly what was going on. I hoped that it would just burst on its own as the thought of having more surgery and the packing of the would was something i really didnt want to experience again. It didnt burst and by Sunday i was in so much pain i got my partner to take me straight to the emergency department. Despite the fact i couldn’t sit, i was left waiting in plastic chairs for 5 hours. Eventually they found me a bed and the surgeon confirmed i would need to surgery again. They performed the surgery late afternoon and i was discharged the following day with home visits from the district nurse. They also prescribed a high dose pain relief which i had not taken before. The poor nurse that arrived the first day found me in tears because the pain relief had knocked me for a six. Whilst it had reduced the pain slightly, I had to hold on to things to walk because I was so dizzy and the nausea feeling was over whelming. He suggested trying nurofen and panadol as an alternative as it was obvious the pain relief the hospital had prescribed was too strong. When he cleaned and packed the wound i nearly went through the roof as the pain was unbearable. I changed my pain relief as per his suggestion but it had little effect when it came to their visits. I dont remember it ever being this painful when the nursed came 19 months ago so something didnt seem right to me. By the Thursday, despite taking the pain relief, i was in so much pain i didnt know what to do with myself and then later that night I had a large discharge. I assumed this is what had been causing the pain and when the nurse attended the next day I told her what had happened. She took a look and suggested i go to my GP as it looked like i might be developing another infection. I went to the GP the next day who prescribed a course of antibiotics. By the Monday I was beside myself with pain and when the nurse arrived I burst into tears again. I said something is wrong because it was never this painful before. She took one look and said you need to go back to hospital, it needs to be drained again. Luckily this time when i went back to the hospital the triage nurse could see that i was in a bad way and immediately got me a bed to lay on whilst i was in the waiting room. Again the surgeon confirmed i would need more surgery and this would be done the following day. I had the surgery in the morning and was discharged later that day. Back to daily nurse visits but at least this time they prescribed pain relief that agreed with me however the cleaning and packing was still extremely painful. I had a total of four weeks of of work. I was still discharging and couldnt sit properly nor walk properly for that matter and the nurse visits had ceased because there wasnt anything they could do because the opening to the wound was too small to pack. I have a sit down job and despite using a pillow it was extremely uncomfortable and painful to sit. At my follow up appointment I expressed my concern that i still couldnt sit or walk properly and the response was we will refer you to the colorectal department for further investigation and if the pain gets too much just come back to the emergency department and we will drain it again. They also organised an MRI to see if i had a fistula. When i attended the colorectal department they confirmed i did have a fistula and i would need a further two operations to fix it. The first one to have a seton put in and then the advancement flap surgery. He checked the wound and said it looks like you are developing another abcess so when the pain gets too much come back in to emergency and we will drain it. As i do not have private health insurance i have been put on the waiting list for surgery within the next 3 months. However he did say should i attend emergency again they would insert the seton. A week later the pain again started to increase and to my horror when i checked the area I found i had another opening/exit which was discharging. I went to a GP who said there really wasnt anything they could do but if the pain became unbearable to go back to the emergency department. I lasted a total of 4 weeks at work before i ended back at the emergency department. Again i had surgery but they didnt insert the seton as they couldnt find the end of the fistula and as the surgeon said “i didnt want to make another hole”. So i am still waiting for my name to come up for the surgery with the specialist. I have days now where the wounds dont discharge, one discharges or they both discharge at the same time. The pain is always there and increases until one or both start to discharge. I’ve had another two weeks off work and im due to return tomorrow, who knows for how long. This whole saga has left me an emotional wreck and i just want my life back. I am lucky in that i have a very supportive partner but i struggle to see the “light at the end of the tunnel”. I pray that the next time they operate they do find the end of the fistula as maybe this will hopefully get me on the road to recovery. For all those who are suffering this terrible ordeal i pray you also find an end to this misery.

  141. morning My experience with fistula started after having an emergency colon surgery where the surgeon “used” my long vertical c-section scar – 22 years old – to enter my abdomen, I was left with an open scar and ileostomy for several months which had to be cleaned and packed daily. After a reversal on the ileostomy 4 months later the incision had not closed up yet and was still draining. The doctor said that some people are “slow” healers. A full year later after complaining about abdominal pain and more problems going BM plus two small openings that oozed smelly fluid still present I’d also started vomiting almost nightly I went to the ER at 2 am. The surgeon was called in thinking she would operate but after looking and palpitating my belly said she’d didn’t exactly know what was wrong and sent me to a specialist who took one look and said you have fistulas coming off your bowel where the stoma base was and was lucky they drained outside the body or the infection could have traveled and shut down my kidneys etc. Since I’ve had 2 more bowel resections and a breast cancer-cell lump removed. Now I am not sure if I have just hit the area on my lower scar though it is indented just below my hip line and above my “private parts …. geez I feel 5 again!” or if I’m developing a fistula. The area was tender and itchy with no marks and then a blood blister formed and oozed a bit. Now I’m distended and slightly nauseated , achey and periodically the area will ooze a little. Haven’t seen a doctor and it has been 7 months since my last surgery…………. what do you think?

    Suzette, artist, wife, mom, grandmom, gardener, 55 yrs old, 5 colon surgeries, 2 breast surgeries, IBD, LCIS, Arthritis, fibromyalgia and too many incoming gray hairs!

  142. It all started when i had a bad abscess back in october 2004, recurred in feb 2005, both were surgically drained, then sept2006 i was diagnosed with fistula, had a surgery involved some cutting of sphincters (sphincterotomy), after 3 months abscess recurred, my surgeon never suggested me to have another surgery, i guess he was frustrated too, he convinced me it would heal on its own since he has removed my fistula already. I believed him and as much as i could i tried to live a normal life, i even considered getting married and have kids, after a few years, it was in 2009 that i noticed that my 3 month cycle of abscessing became every 2 weeks but with much lesser puss, no foul odor since i had my operation back in 2006. And i just had one wound where the blood and puss comes out, my surgeon doesn’t want me to have a seton since my fistula has an external openning, he said we can leave it alone as it is, but last month i went for a check up and i cried, i always feel depressed about this whole thing knowing that i will soon get married, and i just want to be normal, i do have days when i do not have much pain, i can do everything a normal person does, my openning is very tiny like a pin hole with very little discharge, and my pain is bearable even without medication, why can’t they fix me? Is this the best that i can get? My surgeon told me to have an ultrasound and i will soon do that, so that he can check the track, he told me he thinks track is too small and doesn’t need surgery, and he will only do the LIFT surgery on me after i have kids. Because if we do the operation now, he is afraid my abscess/fistula will recurr and may even get worse because of the pressure of pregnancy, i know i am lucky to have bearable pain, but i am becoming crazy about this whole thing, does this ever heal? What is wrong with us? Thank you for creating this site, i have vent my feelings… Diet doesn’t help with this illness i was a vegetarian when i had this, very healthy didin’t even drink alcohol back then, . It is a cycle, there are days when we are fine and days of pain and swelling… Trust me, i have had this for 7 years now i don’t take care of my diet anymore i do drink sometimes, but as much as i can i avoid meat.,i am coping but very depressed, let’s pray for each other here maybe it’s all we need…. God made us, he created everything, he gave us this challenge and only he can take it away. Let’s trust his plan for our lives ,maybe we can all get better by praying for each other, i never had surgery after my 3rd last 2006 and although i am not in so much pain, i am still not normal, this still persists i do not have chrons ,i am 30 years old, 22 when i had my first abscess. Sorry for the long post

    • Praying for you Sha – I know all too well how you feel and what you are going through. I’m still in the midst of trying to solve my fistula. Surgery after surgery after surgery. The doctor’s have been trying to figure out what do next to try to solve this. I just turned 30 and have had mine since I was 24. And I’ve tried to change my diet much like you, but nothing seems to work. I know that it has to end at some point and I’m looking forward to that day and that day will come for you too! Take care and if you need someone who understands – I’m here :)

      Beth

  143. Thank you for this wonderful site. It’s very inspiring hearing how other people have coped with this awful problem.
    I was diagnosed with a peri anal abscess in early August 2012. After surgery it was packed daily by a nurse. The pain!!! Unfortunely I became very ill during this time,the infection being much worse than they thought. I was rushed to A&E,where I was operated on immediately. I woke up with two seton stich’s and a terrific amount of pain.
    For the past year I’ve suffered infections one after the other. Antibiotic treatment and endless sleepless nights!
    It has turned my social life upside down. I find it hard to explain to family and friends just how this causes so much worry. I have to plan wherever I go,take a bag,change of underwear,pads and cream!!!
    Hopefully,I’m getting used to it,but some days are very dark and depressing. Which is why I like this site so much. It’s helped and inspired me to get on with things.
    Dan x

  144. Your experiences sound so much like mine. Thanks for posting this!

  145. I was googling another medical issue, nothing major, and a keyword sent me here so I decided to read this anyway. I just wanted to say that for you and anyone who suffers similarly, you must be so so strong. I can’t imagine going through such long-term, painful afflictions, as I can barely handle the abcess I have going on right now. I hope this works out for you and you can feel healthy and pain-free again, I wish the best for all of you, truly. good luck with everything in the future!

    • Wow we really have been dealt a shit hand haven’t we??? And yet here we all still are keeping each other strong! Thank you for this – it helps so much to see I’m not the only one struggling with these nasty fistulae.

      I am currently recovering from surgery for a rectovaginal fistula. This has caused me problems for nearly three years now with repeated abscesses and infections resulting in surgery after surgery. I had three setons in place for two years. In May this year my surgeon formed a plan to get rid of them starting with laying the smaller fistula open…… That worked a treat and I was now left with only one seton as he discovered the other two fistulae had merged together leaving one huge rectovaginal fistula…. GREAT. I had surgery on sept 10th where the surgeon used tissue from my groin / labia and grafted this to heal the fistula. The pain was something I was not prepared for. I was discharged after a week and told to take it easy for 6 weeks. 5/6 days later the pain was getting worse and I was taken back in with an infection. A week later they were happy the infection was almost gone and discharged me again with augmentin. Now nearly 5 weeks on from surgery I am having good days and bad days. Stumbling across this has given me renewed belief that things will be ok….. Eventually. I won’t find out for sure whether or not this whole thing has been successful but I am keeping my fingers crossed. Not only for me but for all of you too – good luck!

  146. Well I had lift survey yesterday, the surgeon said it went well but he had to leave a larger cavity than he expected due to scar tissue. I’m not really sure what this means but I’ve got packing in and have to have it changed everyday for a week. Has anyone else experienced this? I’m imagining it’s going to hurt. I’m also bleeding a lot still and was wondering if this has happened to anyone else? Annie x

  147. I had a seton put in a week ago today. Since the surgery the area near it has become very swollen, hard, and painful. Has anyone else ever experienced this? It makes it so painful to sit or walk even

    • Hi Shane I has a seton in for 8 months and then had it swapped for a new one which was in for another 4. I’d say it took about 3 weeks for the pain and swelling to go down both times, but if you’re concerned I’d definitely talk to your consultant and get seen in clinic. Anytime I had a concern I was seen within a week and when I did have an infection antibiotics cleared it up pretty quickly. I’m now seton free and recovering from lift surgery, after living with a seton for a year I know how uncomfortable it is, I feel for you. I hope you start to feel better soon.

  148. Setons in my expereince were swollen and made walking and sitting hard. They are like instruments of torture. One thing I found helps is shower yourself clean after you go to the loo rather than using paper.
    I am in the process of living with 2 fistulas after 14 trips to theatre in 5 years. So I feel your pain.

  149. Yeah it feels like a torchure device it’s so painful. What’s weird though us that the swelling that is there is very hard almost how the hardness felt when I would get an abscess. Did your swelling feel hard at all?

    • I remember it being swollen but not that hard, have you had it checked? In my experience it’s normally all okay but you can’t put a price on peace of mind!

  150. Hello,

    I have been suffering since hemmie surgery, and it is difficult to find permanent solution to heal the wounds.Found superior support on forum

    http://anal-fissure.org/

    There is even dedicated sub group for fistula sufferers

  151. Hi fistula sufferers! I am so happy I’ve found this website. I can’t believe there are so many people in the world feeling sore and helpless because of this horrible condition..I am in the UK with five years’ experience of high anal fistula and other related bum problems because of it. It all started from piles as a complication after my first pregnancy. As a result of two surgeries on piles I developed an abscess (must have been an infection after surgery) and this is when I got my anal fistula which goes through part of my sphincter. A drain seton was put it and because the infection got cleared I became quite relieved till the moment when granulation tissue started growing causing so MANY problems in my life. I thought I would get immediate help from my doctors but it looked as if it became my own problem as nothing could be done with granulation tissue, it just grows because drainage leaves an open wound in your body. My pain and discomfort became unbearable to the point that I insisted on an internal investigation. I hoped after more than a year the fistula was healing and the seton could be removed. But they could not remove it then and during the second internal investigation either. I was told to learn to live with it for years if not for the rest of my life! When the seton was pot initially they told me the fistula would be healed in several months and the seton would be removed. Last year I was sent to another internal investigation and they replaced the original seton. It took me two months to recover with a visit to A&I a week after the surgery-the pain was so bad. During my follow up appointment I burst into tears when without any support from medical staff I was offered a choice- they said if I am so desperate and uncomfortable with pain, etc, they can leave the fistula open but it might cause incontinence!!! I am only 40, what a cruel joke…I didn’t know what to do and agreed to go for another internal investigation before making up my mind. When I got a letter of appointment I felt so scared and miserable that I phoned the hospital and cancelled it straight away. Here I am a year after my last appointment with a surgeon, still in pain and discomfort. My next appointment in clinic is re-scheduled for May 2014. I am so desperate to get rid of this horrible seton but I don’t know how. I am an active person who enjoys sport and walks. I have been feeling so bad recently that I can hardly sit..It feels as if there is no end to this suffering. Sorry for such a long post. This is the first time I am writing about my problems anywhere or sharing them with anyone. Healthy people including doctors simply won’t understand..

    • Hello, I’ve been reading posts on this site for sometime now but this is the first time I’ve posted something myself. I read about your situation and mine is almost identical. I am (or was) an active, otherwise healthy mum of 3, working part time and also setting up my own business, I’m 39 years old. After 2 recent surgeries and daily visits for packing and dressing and a dose of MRSA I’ve been left quite useless. I can’t sit/drive, walk properly, I’ve lost my appetite, I’m almost scared to go to the toilet as it’s all so difficult to keep clean. I can’t do any of the activities we enjoy as a family, haven’t been able to work (have had to abandon my business). I also feel sorry for my very patient husband. I agree with what you say that nobody seems to understand just how debilitating this nasty problem is. I have a folllow up appointment in January and really want to try to explain how bad I feel and how limiting it is but I’m worried it’ll fall on deaf ears. I too have been told that the only way to get rid forever is to be left incontinent which just isn’t an option. What do I do? I just don’t know how to deal with this but can’t believe that this is it for me, there has to be something someone somewhere can do to help us. Thanks for reading and for this site.

  152. Hi all

    Like yourselves I have a fistula, caused by abscesses; how many I do not know. This year has been hell for me, I originally thought this situation was a minor, however I’ve recently started doing some research and have consequently found that ppl have been living with this problem for YEARS. I apologise for my pessimism, as I know it will make it seem worse for readers and those here, but I just can’t accept this.

    I’m a young male, have just turned 18, and want to have sex. I want to engage sexually, but how can I? With the damned pus draining every minute of the day and having to wear pads, the embarrassment of the smell and being seen with the former is too great to risk. I fear entering a relationship and going for a girl I like due to the likelihood of engaging in sex. And to learn this may not be a short term problem. I am truly sad, truly depressed by this.

    It may be the case I also have crohns, my doctor suspects so, but I don’t even care; one can lead a perfectly normal life with an ibd. I just want to eliminate this fistula, to prevent pus from leaving my backside. I just wish to lead a normal life.

  153. I feel less alone AFTER reading YOUR POST. WOW.!! I’M IN SO MUCH PAIN FROM A BIOPSY ON ANUS NEAR LABIA I HAVE A LUMP DEEP INSIDE TOO.MY GYNECOLOGY DOCTOR SEEMS UNEDUCATED. WHAT TYPE OF DR SHOULD I BE SEEING??

  154. Hi, just back from follow up appt with surgeon following abscess drainage and partial fistulectomy and loose seton(I think!). Although I know I should be grateful that this condition is not life threatening it is quality of life threatening. The surgeon said its a pathetic illness and i shouldn’t be so pessimistic. True perhaps, but to hear I will never enjoy the activities that are important to our family as a whole is devastating. Can anyone tell me if they have been able swim or cycle with a draining seton? Any hints or tips would be very welcome as it’s just dawning on me how restricting this illness is. Thanks you.

  155. I was glad to read of others experiences with all of this. I’m scheduled to have my first Seton surgery on Monday 01/13/2014. I’ve been dealing with rectal abcesses that track up through my butt cheek for the past 15 years. This last one that developed in December became a serious staph infection. UGH! I’ve been on antibiotics, and had it drained. I’ve had the visiting nurses come in to do wound care every day for 3 weeks now. The wound itself is just about healed, unfortunately though another infection has set in in the same tract. So I was sent to a specialist on Wednesday who said he will put in a Seton. He said I’d have it for approximately 8 weeks and then he would go in and repair the fistula. I’m not looking forward to any of this, especially now that I’ve read about how many issues everyone has had. I just wanted this to be fixed once and for all but it seems like that’s not going to happen from what I’m reading.

  156. Goodluck with it,and keep smile. I know you can do it

    • My surgeon sia dthe same that it was not life threatening but as you say it is very life changing! I am not a vindictive person but it made me so mad I almost wished he would go through this to see what impact this horrid condition has on suffers. Its nearly a year since I had my 2nd seaton out and I was told that the extra hole I now have in my backside is perminant and to get on with it. I have had to change my working hours to allow for the fact I need to shower clean after each BM and have done now for over 18 months as loo paper burns and itches too much. I have to change my dressings every hour or so as they are soaked in liquid and it looks like thats the way I am supossed to live out the rest of my days. I can get out dog walking but the thought of sitting through long flights, concerts or planning other things I would have liked to do is now just a pipe dream. I used to like to swim but now fear getting infections so I can sympathis with your plight. I wish you well for the future and hope that you will get back to doing some of the things you used to enjoy or are able to find new interests to give some quality to your life.
      Best wishes
      Debster.

  157. HI Debster and other fellow fistula sufferers,
    I’ve dealt with the post-BM cleaning by keeping a sqeezable plastic bottle, the kind that bicyclists use to carry water on their bikes, with me at work or wherever. After a BM, I reach round with the bottle pointing downward and spray my backside, from top side down, so whatever’s left on me goes into the toilet. I then gently pat dry with a cotton cloth or towel. I lift the toilet seat before doing so, and you have to kind of raise up and squat a bit while doing this. It took just a little practice to get it down so it’s easy and routine to do. I hope this helps a bit, and my thoughts and prayers are with you all.
    Ken

  158. Hi I’ve been in this situation since September 2013. Had a perianal abscess which was operated on, two weeks later back into hospital and had a seton inserted. Feb 18 had the advancement flap proceedure done. Feeling really fed up with the whole thing! Have something to share though with regards to sitz baths. Buy the largest foil roasting dish you can find and use it under your toilet seat. cheap, easy and effective. I put epsom salts in the water and sit tight. It works.

  159. Hey, what a super job having this website/blog for others! Thank you! I was thinking of starting to blog on my last 18 months (with a fistula), came across this and thought why reinvent the wheel ;) I was wondering whether you have tried homeopathy to get to the underlying root of what’s making your body re-create the infection (argh it’s so frustrating when you feel like you’re getting somewhere – I totally know!). I’ve been seeing a homeopath for the last 6 months (based in Northland but does distant work) and it’s taken away any tummy troubles, and cleared a lot of root causes…fistula bearable (still sit funnily) and haven’t had to have surgery since the beginning (when I took the seton out after 1 week because it was too painful), so I think it definitely is helping…I’ll keep you posted. I also spoke to a homeopath in Auckland nzhomeopathy.co.nz and she said she’s worked with people with fistulas before so maybe she’s worth a shot…will keep you all posted on that too. Happy healing x

  160. Hi Kali
    That’s a refreshing view on the whole subject of fistulas and I believe it has merit so thanks for the info!
    I have had a seton in for 3 years and the surgeon now says that the fistula looks like it needs to be “laid open”.
    Can anyone tell me what that means?
    As I am certain it means surgery, I am inclined to stick with my seton because I cant get any time off work for anything, let alone an operation which might need recovery time.
    Would I be correct in assuming it means that the tract is now so short that the surgeon can lay open the two sides of the tract and stitch across the middle?
    Could be way off track because that is a huge assumption based on the words “lay open” and my experience as a seamstress LOL!
    Does anyone out there have a medical answer for me because surgeons are generally not that talkative?
    Di

    • Hi Di, I haven’t had a fistula laid open, but my surgeon did tell me about it. He said that it is when they literally cut the fistula out. So they cut out the fistula and the surrounding tissue, so that you are left with a hole. This hole then heals from the inside out, so all new tissue grows, minus the fistula tract. Perhaps your fistula is now short enough to lay open. Often, they don’t like to lay them open if the fistula is running through muscles (sphincter muscle usually) as it can make some people incontinent. If your fistula is short, I guess you would have a small hole (cavity). This hole is then packed daily with gauze etc by the nurse until it heals outwards. Apparently the packing and dressing is painful because it is essentially an open wound that they are ‘packing’. However, laying the fistula open is meant to be the most effective way of healing it. So there is a light at the end of the painful tunnel!
      I hope that makes sense?? It’s how my surgeon explained it to me anyway. I thought of it like getting a spoon and scooping all the damaged infected tissue out to leave a hole. I could never have it done because my fistulas were so high and complex and running through too much muscle.

  161. Thanks so much for the comprehensive reply above.
    My gut feeling tells me to stick with a seton as I have been through way too much since April 2009 to even vaguely consider surgery.
    I have had daily packing of wounds so many times that I just cannot face the thought again.
    Do you have any idea how long one can keep a seton in place?
    I had the first seton for 18 months and then it was replaced with a “Gortex” seton, which has now been in for another 18 months.
    Replacing the last seton did not cause a single moment of pain, so if I need to replace it again, I dont think it would be painful if I can travel up-country to my original surgeon (I trust him).
    I would never have made it through the last 4 years without this website because at least I know I am not alone, and no one will ever understand this condition and all it entails unless they have “been there, done that”.
    Di

    • Hey Di, I’m glad the website has helped you, that’s exactly what I wanted to do when I made it :)
      I was told by my surgeon that one can have setons in permanently if needed. So if you wanted to stick with the seton for another 6 months or something you could. 4 years is a long time to have to deal with it, and I feel for you. Maybe ask your surgeon for more details on how he wants to lay it open, and what he thinks the success rate would be percentage wise. And then make a decision? If he thinks there’s a good chance this will fix it for good so that you can get on with your life fistula free, it might be worth considering one more attempt? If you feel you can muster up the strength, otherwise, yes maybe give yourself a break for a few months. You could always get a second opinion on it too maybe. Let me know how you get on

  162. Thanks for your comment.
    I would love to be “fistula-free”, especially as I am single and I do worry how it affects a new relationship.
    Some of your other members have spoken about this aspect of having relationships, and all I can say is that a person who copes with someone who has a fistula or abcess is a very special person!
    I have a full-time job which does not even allow me to take my annual leave and I battle to get sick leave even when I am completely debilitated with bronchial pneumonia, so the chances of getting time off for my fistula to be laid open and the subsequent wound care would be zero.
    For that reason, I am quite relieved to have the option of continuing with a seton. The surgeon said that it might “fall out” at some stage, at which time I would be forced to consider the next step!
    One day at a time, and thanks again for your helpful website :-)
    Di

    • Hi Di,
      I’ve heard that sometimes setons fall out after only a couple of weeks, but I had the same ones in place for a long time and never had a problem. I think that you can live with them if you’re doing all the right things, and it sounds like you are. Good idea to give yourself a break from it all for a while and then think about the laying open option. As long as your surgeon thinks that will be ok.
      I know exactly what you mean about relationships. I actually met a man when I had fistulas and he was really fine about it, but it didn’t work out for other reasons. And now I’m fistula free – I’m single! Haha go figure, that’s life I guess! You will meet someone either way, I think it’s more to do with how you feel about yourself, rather than whether you have a fistula or not. And sometimes it’s hard to feel good about yourself when you have a fistula, so I guess the two go hand and hand. It’s part of you for now, but it won’t always be :)
      One day at a time is right!! Try to start enjoying yourself again, and hang in there :)

    • Best of luck and super healing Di – thinking of you!

      • Thanks for your healing wishes, Kali! I have helped many patients with my healing thoughts so I hope yours work for me :-)

  163. Reading your story makes me very scared yet relieved that im not alone. Ive just started my journey of rectal abcesses :(.

  164. Hey guys, my name is Danielle and I am 21 turning 22. I decided to add my experience on here as this blog has really helped me. In November last year, throughout assessment time as uni, i felt more run down than usual and was really suffering from anal itching, bleeding and irritation. I dont really remember how long these symptoms has gone on for but I did not do much about them as I assumed it was a heamoroid as I had felt a lump near my anus. I was too busy during this time and did not make enough time to take better care of myself. I went to my usual doctor surgery however although I usually stick to my main GP, he was away so i saw another GP. The Doctor gave it a brief look and didnt say it was anything other that a little scratch and gave me stool softners and that was it. I did end up getting steroid cream to help with the itch but i was not impressed with the way the Doctor handled this. After this i went on holidays overseas before christmas and the pain and irritation was slowly getting worse however I would go through periods where it didnt seem as bad as other days. Around probably the start of Feb, one night I got so irritated and itchy, I was crying and could not sleep, I had a look at my bottom in a hand held mirror and there was quite alot of pus. After this I saw Another doctor and she assumed it was a a fistula however sent me for an MRI to confirm this. After the MRI i was sent to a colorectal specialist who i got into about 3 weeks after my MRI. At the appointment he booked my colonoscopy in for a week later and today I went back to hear the results. It had already been confirmed it was a fistula but he said it was a bad one and quite long. I have my surgery in two weeks time and will be getting a seton stitch. I just hate being run down and in agony constantly from this fistula. The specialist did say that there was no bowel cancer or disease but a bit of muscle in my bottom spasms and may be effecting this. I just want this all to be over with, and I dont even remember what its like to not have an itchy bottom. How does everyone who has the seton find it? Is it itchy and irritating? Or more painful than itchy? I am so nervous but this forum has helped me so much into understanding more about fitulas. Before i had a fistula I had never even heard of it and first thought the doctor meant to say anal fissure instead of anal fistula. Danielle

    • Hi Danielle, that sounds so awful! At least they know what it is now and can help you with it! I hope it all goes really well and smoothly. I have read a lot about operations and asking the Drs to say positive things to you at the end when you’re still under anesthetic because then it goes into your subconscious and hugely speeds healing…google it and ask them to say something like “this operation has gone really well, you will heal really quickly and the seton will feel comfortable” – nothing to lose. I felt too shy asking, and I wish I had!

      We will be thinking of you! x

      • Thank you Kali, I appreciate the support so much as my mind and bottom is going crazy haha. I have never heard of that but that sounds really nice :) did you have a seton stitch? If so how did it feel? Thank you, Danielle :)

      • Hey Danielle, hehe, yes it’s good to see the humour when possible :) Also totally OK to just be with the multitude of feelings sometimes too. I had a seton stitch the second time so that it could keep draining, but the surgeon tied it too tightly from my comfort and it felt like I had an anal fissure all the time (I had recently had them, which led to the fistual – so the skin there was already sensitive). I ended up cutting it out and my body just naturally kept draining (mostly) after that. Don’t let this experience put you off though – everyone is so different, and there are so many different types of fistulas – and I know setons can be really helpful for drainage – because when there is a block it gets so painful and inflamed which for me has always been the most painful part about it. Where are you based?

    • Hi Danielle, I am 39 mother of 2 and this is also the first time I ear about this. I had an anal abcess drained on Jan 31, 2014. fistula surgery april 10, 2014 ( woke up with a red rubber band setton). I have no clue how long I will keep this seton, and I feel very upset and sad about waht is happening to me :-(
      The doctor said that he want to remove the seton once the pus clears out.
      I still have pain and cannot sit down properly but keep in mind my surgery was 1 week ago.
      I know that this will be a long road with possibility of more surgeries.. and feeling very scared.
      I hope you are feeling better. Let me know how you are doing with your setton?
      Cathy

      • Hi Cathy
        Sorry to hear that you are in so much pain. The area surrounding a fistula operation contains a lot of nerves and most people would feel a lot of pain after an operation.
        I have had setons and have been very thankful for them because they assist with drainage. The type of seton and how long it stays in will depend on your individual situation. All operations in the anal area differ from person to person.
        I understand completely how scared you feel because I have been through it all myself.
        All I can say to encourage you is that being positive will assist with healing, and so will good nutrition. Not many people will understand what you are going through, but read this website and share your concerns with us because we know how you feel.
        Take care, and I wish you a sound recovery.
        Diana :-)

      • Hi Cathy, Sorry I did not reply earlier to your comment as I didn’t see it at first. Well it has been just over 1 week since my surgery and i now have “nappy rash” i guess from all the washing ect. I do have very sensitive skin aswell. My bottom is still quite sore and at times the pain is worse than others, I still take painkillers every now and then just to help me sleep if its real bad but sometimes its just not enough to get me through the night. I am hoping that this all gets easier to deal with. I get quite sad about it too, you are definately not alone. I cry quite abig just from the frustration from feeling itchy or sore and run down. And its hard to talk to my parter/friends/family about it sometimes cause they have never experienced it. Its just hard cause its such a crap spot to have something wrong there and its sooooo hard to get comfortable! Let me know how you are going! Feeling your pain!! Danielle

  165. Hi Danielle
    It sounds like you’ve been having a rough time!
    I have had setons in place for a long time and I thought I would never get used to them, but I have gradually come to terms with it.
    Like you and everyone else who has any sort of rectal problem, I wish that I could be free of this condition. Some people heal totally, and others go through one thing after another. You will realise this if you read most of the stories on this site.
    The great thing about this site is that your pain will be understood here. It is a lonely condition but at least you know that you are not actually alone.
    I know it is easier said than done, but it is important to feel positive about healing, no matter how long it takes. Nurture yourself as much as possible with healthy food to keep your immune system at its best. Be glad for small blessings.
    Let us know how your surgery goes and how it feels with the seton?
    With love and healing,
    Diana

    • Hello Diana, Thank you so much for replying to my post, I appreciate it so much! :) I will let you know how it goes! I appreciate the support!
      Thank you!!

      Danielle :)

  166. Hi Danielle
    As Kali says, everybody has a different experience with these conditions depending on what caused the abcess or fistula and how things went from there.
    I have had setons in for 3 years but that does not mean that everyone has them in for that long, and some people might have them in for longer.
    My first seton was not that comfortable and I found that placing cotton gauze squares around the seton stopped it from hurting me, and the gauze also soaked up the drainage.
    (If you use gauze squares, don’t ever put them down the toilet! They must go in a bin otherwise they can block the plumbing!)
    The surgeon used “Gortex” for my second seton which is still in place after 21 months. This seton has been a lot better (touch wood). I still use the gauze squares because I feel more hygienic that way.
    Everyone is different but I personally felt that anything that made me feel more comfortable had a positive effect on my healing.
    Thinking of you,
    Diana :-)

  167. When I was 14 I discovered a sore little lump on my back side which was untreated so it got bigger to a point were, I could not sit or stand or do anything. It got so painfull I ended up in a&e, had my very first operation. Had to get it dressed for 8-9 weeks afterwards. Shortly after I discovered more ‘under the arms, brests and in my groin, got referred to a skin specialist where I was diagnosed with ‘hydradenitis supperativa’ this continue d for years im constantly on medication I was even on an injection twice a week called Humira, im 22 now after numerous operations I’m still suffering trying to look after my daughter who is one is hard when I can’t lift her up at times I also can’t wear short sleeved tops as I am covered in scars. My next chance is to have plastic surgery I have appointment in June so I’ll update the outcome :-)

  168. Hey guys, It has been almost a week since my surgery ( SETON FISTULOTOMY) I was very nervous for the surgery, however the week leading up to the surgery was hell, I was soooo itchy and it seemed more painful than usual so at the same time I was keen to get it underway. I did not feel much pain when I woke up as I had gauze bandages in between my bottom cheeks and around the anus. I had painkillers for the surgery and also afterwards. I had to wait in recovery for quite a while, and then went home and slept. The pain started probably about two days later, I ended up becoming very constipated, and tried pooing but inly a tiny bit came out and it was soo painful i was crying and yelping. After that I was dreading trying to poo again, yesterday ( 5 days since surgery) I tried pooing again as the night before I was threw up because I was that backed up. Yesterday was even more painful, bleeding, and it felt like everything was just ripping open, and it would get caught on the seton. I was so frustrated and exhausted from trying and being so constipated. I was so upset I didnt even want to eat anymore because it was that painful. However after eating heaps of fruit, prunes, ect today I finally went to the toilet successfully. I was so happy, however the pain has still be really bad, and it has been stinging, and been hard to walk around all day but my stomach feels so much better. The pain is still bad from the fistula and at times it is worse than others, its hard to get comfortable and I have sitz baths 2-3 times a day, sometimes more if it hurts or if I have tried to go to the toilet. I just cant wait for this all to be over and to feel what its like to have a seton/fistula free bottom and feel normal again. This forum has helped me so much in my journey, and I am so glad I am not the only one out there with this problem. Danielle :)

    • Hi Danielle, I’m so glad that you finally managed to have a good poo! Oh my word, I know exactly that feeling – I’m sure they create lots of small fissures when they do the procedure and then going to the loo those first few days is hell! It does get easier though :) I used aloe from the garden with the skin taken off and put it up there – was so soothing and really healing. Also the Weleda chamomile and hypericum ointment has been amazing to put up internally. Outside I just tried to keep it clean and as open as possible. What country are you in? Do you know of any Chinese Drs around that you’ve heard about – like any profession some are great and some not so – but I have had amazing success with Chinese work and also homeopathy. It’s such a great way to support your body fully from the inside as well and then really the body wants to be in perfect health so if we can find the things that support it to remember how, then we can fully heal :) You will have that nice smooth, normal, comfy bum :) Happy healing xx

      • Thanks for your reply Kali, I know, the toilet situation was absolutely horrible at first, it made me think that I was never going to be able to go the toilet normally again, but luckily it has gotten so much better, and sitz baths definitely help soothe the area aswell as clean it. I am in Australia, I am not sure of any Chinese Drs but I will definitely look into it :) and my Mum has a huge Aloe vera plant, I never thought of that, so i might get some from her. I was just worried as to what I could put there thats all, as I did not want to use something just incase I got an infection or something but this forum is great for that. Thank you for your reply! I will look into the things that you suggested :) Danielle x

  169. Here are some Lifesavers that’s helped me through it for the itchiness using Neosporin cream they have the pain relieving cream the sulfur helps with healing decreasing inflammation and swelling but the most important thing and help me is when it was really painful I would apply ice to it so I would wrap it and a paper towel or cloth wet it put the ice against it. Any surgery prolonged my healing I had to realize its a long healing process and every attemp at a quick fix with the drs started me over ? After every bowel movement have to clear area with finger and can use what’s called a finger cot like a finger condom, or may use an enema if not too inflamed. Every time as to not reinfect which will cause swelling – it get smaller and smaller over time SLOWLY as long as don’t keep aggravating it! Clean clean clean. Peroxide on outside to keep it open and antibiotic cream not ointment!!! Internally for me is working unbelievably

    • Thank you Mike for your reply, I really appreciate it. Yes I have just been having my sitz baths and doing everything I can to keep the area clean! i definitely want see if i can get some cream soon cause im starting to get very dry and itchy/raw down there around the seton and this effects my sleeping at night. Thank you for your tips! I will look into them :) Danielle!

  170. Hey guys, so it has almost been 2 weeks since my seton was put in place ( partial seton fistulotomy) And I am going insane. I am raw, I am itchy, My partner can’t have intercourse with me because the stitch ends are sharp and it sticks right up near him and hurts him. I am sooo uncomfortable, i thought it would just be painful, I would prefer pain ANYDAY over the itchiness. It is driving me blood crazy. I have not stopped crying all day because I just don’t know how I am going to get through the next few months. It sucks :( Danielle

    • Hi Danielle, everyone on this site knows how you feel. It’s an awful thing to go through that’s for sure! 2 weeks isn’t long at all, I never felt any better after surgery for about 4 weeks… try to be patient. To be honest, I wouldn’t think that having sex two weeks after having a seton placement is a good idea. I could hardly sit down after 2 weeks, let alone do anything else. I’m sure your partner will be able to wait until you’re more healed. You will have days where you cry a lot, I did all the time. But realised I needed to pick myself up and get on with it, be as healthy as I possibly could, and do everything I could to get better faster. If you’re raw and itchy, you may need to clean more, use gauze pads & stick them right up between your bum cheeks so there is no rubbing, and perhaps ask your doctor for some sort of barrier cream. Lots of baths. Lots of water and diet change if you need it – I cut out gluten, wheat, dairy and sugar because they irritated my bowels. You will learn to live with it, the initial shock takes a while to wear off, hence all the emotions you’re going through. But it sounds to me like you may be trying to do a bit too much, too soon. Take it easy and take care of yourself :)

      • Thank you, yeah everyone keeps telling me to take it easy but i think cause its driving me nuts that I have been trying to distract myself and thats probably why I wanted to try to have sex to distract myself because I feel like a crazy person haha. Thank you so much, I will try and take it easy more and try and be more patient. I was having 2-3 sitz baths a day but I am trying to have more now and yes trying to be as healthy as possible. It is just so hard because I am just not getting enough sleep and I no one around me understands what its like to have one. I would’ve went even more insane if I did not know about this site! Thank you again for your support, I will get some gauze pads and try to use them more and look into a barrier cream :) And try to take it easy! Thank you!

    • Hello Danielle, I feel your pain. You are so young to have to deal with this :-(. I can totally get were you are coming from..We want to be as normal as possible and want to regain our lifes as soon as possible. Making love scares me and I hope that we will be able to go there soon. (after reading your post, I think I will keep my gaz not to hurt him)
      What I can understand, fistulas are so unpredictable! So we feel so insecure about what’s happening to us. I cry almost every day, and feel scared about the next few months.
      I can only pray and hope for the best!!
      I try to eat lots of veggies, fruit, fish, chicken and salades. I take hot water with honey to help with the inflammation. 4 sitzs bath a day (very warm). I sleep on my side with a pillow between my legs, so less pressure on my seton.
      I were gaz with tape to hold it in place.
      It’s been 2 weeks since my seton has been put in and I do not take any pain medication. I’m still at home but planning to get back to work in 1 week. I started to go out for groceries and for my kids. I sit down and get up very slowly.
      I hope you feel better soon, Be strong, take walks, enjoy the sun and I find deep breathing helps my nerves.
      Cathy xoxo
      Thank you for sharing,

      • Thank you for your comment Cathy, i appreciate the support so much. I have definitley been trying to eat lots of fruit, vegies, protein ect. I also take superfood powders aswell such as acai smoothies, camu camu powder and sometimes bio bubble which i mix in fresh juice. Bio bubble is a very good probiotic for the stomach. I have honey but yeah i usually have it in my hot black tea and night. :) i also eat yoghurt. Yeah I try and have my sitz baths as warm as I can take it, and they definitely do help soothe the irritation. I know, it really sucks, because my friends dont understand that I never feel upto doing anything because I get so uncomfortable being out of the house like shopping and stuff and I always feel so run down and cranky. I sleep with a pillow between the legs to, i always have, i find it more comfortable. I am going back to uni next week, ( i am not working atm) and I am dreading have to sit in an uncomfortable chair all day with heaps of people around. I also get soo concious about the smell, i worry that i smell gross down there due to the fistula. I am so glad I have people to talk to on here or I would seriously go insane!!! No one understands and it is so hard to explain to people how it feels. My partner has been so amazing, he didnt want to have intercourse with me, but I wanted to as I said in previous comments because as you said we want to lead as normal of a life as possible and it is so hard sometimes to distract myself from the pain and discomfort. Most days I just wish I didnt have to leave the bed or bathtub. Thank you, And yes deep breathing has been a saviour! I try to do some basic yoga poses and deep breathing when i feel really uncomfortable just to try and relax. I hope you feel better soon as well and please keep me updated as I always turn to this forum to keep my sanity. Best wishes for better health :) Danielle xx

  171. I have had a lot of relief from the raw, itchy skin problems by using a cream called Calmoseptine. I’m in the USA, but I imagine such a product is available most anywhere. It’s basically zinc oxide and menthol. It is very soothing. Please try it, or something like it. Best wishes.

  172. Hi Danielle
    As all the others have said, we do know how you feel and we fully understand your anguish.
    I used squares of gauze (at least 2 squares to create more cushioning) and wrapped them around the ends of the seton so that they wouldn’t chafe me.
    I also wore sanitary pads (the very old-fashioned thick ones) so that the drainage did not smell. The sanitary pads were very comforting to me because I felt that I had done everything possible to “nurture myself”.
    This is hard to explain and it would not work for everyone, but it worked for me.
    I did not have an intimate partner when I first had the seton but I understand your need for closeness because we tend to feel very alone when going through fistula or abcess issues.
    When you have given yourself some time to heal and recover from the operation, try to be creative about intimacy. Where there is a will, there is a way! At least your need to be intimate shows that you have not withdrawn into yourself. Don’t be shy to seek love – it will help with your healing. Just remember to be gentle.
    I will continue to keep you in my prayers, Danielle. I also cried a lot but you will eventually get stronger.
    Take care
    Diana :-)

    • Hello Diana, thank you for your reply, i will be keeping you in my thoughts :) so the other day I had my post op appointment and the surgeon said it was very complex when he operated due to it being through the sphincter muscle. However he said it looked like it was going well and he will be seeing me in 3 months time again to review me and hopefully make steps towards the surgery! Which i am so happy about. Sexual intercouse is going better now as I pack around the seton especially for sex and i find that this helps, however i dont have it often as i feel gross all the time and don’t have much confidence at the moment. But all is going well, except the other day when he felt around that area it hurt but for two days after i was getting really painful striking pain and getting shivers all over, has anyone experienced this before??? Anyways how are you going Diana? I hope all is well and you are healing! xoxo best wishes, Danielle :)

  173. After 7 years of perianal fistula multiple EUA’s 2 setons key hole surgery that perforated bowel (now hve ileostomy) and a last attempt in July at a fistula repair which was so painful after, I have given up, still leaking offensive fluid daily and am going for the proctectomy – feel all your pain peeps, but wish now I had just had the big op in the beginning years of this has ruined jobs, sex life, body image to name but a few, but we sty strong and grin and bear it ((((HUGS)))) to all xx

  174. Hey guys! It has been about 5 weeks now since my surgery, ( i had a seton put in place )and the pain did settle down alot…however now I have been experiencing shooting sharp stinging pains through my fistula… So its not a constant soreness but just random shooting and it hurts alot. Has anyone else experienced this? I think I will have to call the surgeon to see him.

    • Hello Danielle,
      I’m in my 6th week of a seton and I also get sharp pains at any time. It really hurts for a moment then it’s gone. I have an appointment with my surgeon this afternoon and I will ask him if its normal (post op). I know I will be stuck with this for a while and I only can hope that I will eventually heal. When I feel soar, I take a warm bath with epsom salt.. I find it helps.
      I’m thankful that I can still do a lot, work, play with the kids, bake, clean, go out shopping and walking. (all basic stuff.. no gardening :-(
      Planning my sitz bath, eating well, changing my gaz is the tricky part at work and in my day to day activities!
      I can say that I’m trying to stay positive, getting a second and third opinion about the next step.
      I was thinking of you Danielle this week and I was hoping that your back to school was going well.
      Take care Cathy

    • Me again, I spoke to my surgeon and he beleives thats the pain has to do with cafeine consuption? So coffee, chocolat etc.. I will stop both and let you know if mine go away.
      I had purchased dark chocolat with almonds… guess I wont be eating them :-)
      I am also being referred to a colorectal surgeon for a second opinion. Keeping my fingers crossed that he will have good news for me. My surgeon said that the inflammation was gone (good sign).

      • Hello Cathy! I think of you too, thank you for replying to me. Well i am still waiting for my surgeon to get back to me, he is a colorectal surgeon, was your surgeon initially just a general surgeon or do you mean that your chrrent colorectal surgeon referred you to another colorectal specialist? Well i will let you know if i see my colorectal surgeon soon. The pain has settled today, and uni has been going good other than the sharp pains. Thats i teresting that it could be from caffeine? I have been drinking a fair bit of coffee due to study periods at uni. I can usually do general activities too, its just so hard if the pain strikes while i am at uni and if i cant pop myself straight into the sitz bath. Hopefully next semester most of my subjects will be external so i wont have as much sitting in class time. I am glad you went and checked it out, the colorectal surgeons admin lady said she would call me back as soon as she speaks to him. So i will keep you updated, i hope the pain settles! Take care of your self :) Danielle xx

    • Hello Danielle,
      I’m wondering how your summer is going. I saw the CS and he will be performing the LIFT in the fall and because my fistula is high he is not sure he will be able to!
      So the flap afterwards if the LIFt is not possible! Fistula surgery is not urgent here in canada so the wait is long for surgery, very depressing!
      Hope you are able to do the things you enjoy!
      Let mw know how you are doing!
      Cathy

      • Hi Cathy! I am so sorry I totally didn’t see this message. Well its winter here in Australia at the moment :) thats good that you saw a CS, i Hope the surgery goes well! When will you be getting it done? Luckily, my CS is prompt and That I am still under my parents private health cover here in Australia, as I am still at uni. So luckily It doesnt take too long. I saw the CS a while ago because i was worried that my seton stitch felt loose, he said it was fine and that he wants it to mature longer but in august i am booked in for my muscle testing, nerves ect and if it is good when he checks it then, then hopefully he said he will get me in sometime after that. He just wants to make sure to not rush it and that it heals and clears up as much as it possibly can. So i am still having very regular sitz baths, however because of the dry winter here, I get even more itchy than normal :/

        Anyways let me know how you have been and sorry for taking so long to reply. Best wishes for your health :) x
        Danielle

  175. Hello All,
    If I have just one piece of advice for anyone suffering with this condition, as I have, it would be to go directly (if possible) to the best colorectal specialist you can find. My first surgery to cut out an abscess that had epithelialized and would not heal was done by a general surgeon. I’m quite sure he didn’t use muscle relaxant before he pried me open to look for any fistulas that might have formed with the abscess. So, on top of a gaping wound that would take twice daily packing and sitz baths for 16 weeks to heal, I was left with very black and blue area around my anus that could not have been good for the very important muscle tone in that area. That bruise took even longer to completely disappear. In addition, once the would “healed,” there was a small red dot of tissue that would not cover over with skin. This turned out to be a fistula that had formed along the healing track of the wound. I went back to the same surgeon who verified my opinion that that’s what it was, and he started talking about another surgery to fix it. I initially agreed to schedule it with him, but had this voice inside that said find another surgeon. Meanwhile, the one fistula branched off into another, which formed another abscess. I was a mess! Long story short, the new surgeon, a colorectal specialist, fixed me up and I’ve been all healed ever since. I do realize that I’m very fortunate, as many who suffer with fistulas have a much more difficult to impossible time being rid of them. My thoughts and prayers for healing and comfort are with you all. God Bless.
    KC

    • Hello KC, I feel your pain, glad to hear things are looking up for you!! :) I was lucky enough that my DR referred me straight to a colorectal specialist straight away and after MRI, Colonoscopy and muscle testing ect, it confirmed that I had what the surgeon said was a “bad and complex” tract through the sphincter muscle. I now have a seton stitch in place which will hopefully be removed by the end of the year. The worst part of fistulas is that the process seems to take long periods of time. It has been an emotional journey but it is so good to talk to other people and hear about their experiences! Best wishes for your health! Danielle :)

  176. Thank you for sharing your story. I’m 3 days post-op my 4th fistula surgery in 6 months. I got a plug placed and it is very painful. I hope you’re journey to health is going well.

  177. Hi guys,
    Just got back from Montreal, the CS will be performing the LIFT. The waiting time is long… grrr!! Probably in the Fall or Winter. It seems that fistula surgery is not urgent.
    The doc is not sure that he will be succesful has the fistula is high (he beleive 50 pourcent of the external muscle :-(
    If the LIFT is not possible he will try the Flap. So maybe two surgeries.
    I’m keeping my fingers crossed that the LIFT will be possible.
    The Flap seems pretty hard to recover from?

    Thank for the support.
    Cathy

  178. So I had my first of what seems to be multiple operations last Friday. I had a drainage seton put in. How did get here???? Well let’s start at the beginning up until three weeks ago I was a relatively happy, single mom, enjoying life. Daughter in college, new job, starting a new relationship and life is good. I had an anal abscess over 10 years ago, it was lanced in thee ER when I went to go see my GP he took the shunt out (that is what he called it) and sent me on my way. Well the darn thing never closed. It would like a little blood when I had a very strenuous bowel movement but that was all. The only thing I didn’t have control over was flatuence. I would pass gas randomly. I thought it was because of the fact that I had fibroid removal surgery around the time this happened so since they opened me up right across my abdomen I thought that this issue with farting was a result of the surgery..who would have guessed this???? So fast forward to 3 weeks ago…I am in the shower and my bum started itching….This is not unusual. So I scratched it….That was not a good idea. A day later I am taking a shower and it is still itching/begun stinging. I keep hydrogen peroxide in my house so I get clean cotton ball, put some on and began to apply it to the scratch….Fine for that day…Next morning I wake up with extreme pain in my left buttock and a foul smelling green fluid seeping from the scratch….I call an urgent care center when I get to work and make an immediate appointment to go see a doctor. First thing that runs through my head is oh hell….I gotta get this lanced again. I get to the doctor and he looks at it and says “You have to go see a surgeon” but first I want to prick it a little to get some of this stuff out. He pricked it and out came gushing this smelly green stuff. He gives me two prescriptions one for Amoxicilin the other for percocet. By Monday, the majority of the pus has drained and I am not feeling that much pain so I cut back on the percocet. I make an appointment to see this doctor on 8/1. I go see the surgeon on 8/1, he does a brief exam…he tries to put a thin wire through the hole to determine if I have a fistula…Sure enough I do…He explained to me what a fistula is and what has to be done. I schedule my surgery for 8/8. I didn’t hesitate because I did the I&D and I know waiting just makes it worse.

    On 8/8 my sister picks me up from work and I go to have the surgery done. It’s an outpatient facility. I go in.. talk to the nurse, talk to the doctor, talk to the anesthesiologist and proceed to get taken into surgery. The anesthesiologist is a cool kid he keeps the moment light by telling me he is ready to give me some “Drinks” and that my “cocktails” are on ice. They strap me down to the operating table and the next thing I know I am in the recovery room…During my procedure the doctor goes and talks to my sister and informs her that I will have to have a second procedure in 6-8 weeks because it is more complex than was first believed….I wake up in the recovery room not too much pain…I had cramps because wouldn’t you believe it? I got my period while they were operating on me. So not only am I bleeding from a hole in my ass but I am bleeding from my vagina…..First thing I want to do is go to the bathroom….I got a pressing urge to urinate. I was a little dizzy but there was no immediate pain. Nurse helps me to bathroom, i checked the packing…not too much blood. Get back in the bed where the nurse brings me some animal crackers and some tea. Eat the crackers, drink the tea and all the while my sister is watching me and getting things organized so I can leave…Getting the post op instructions, my pain meds and talking to the nurses. I get dressed, we go home. On my way home that is when she breaks the news to me that I have to have another procedure…..WTF for real???? I get home I go to bed and it is not until the next morning I feel this protrusion and the dull throbbing pain that goes with it. I needed to get some things from the supermarket, so I get dressed and proceed to go to the store. Get back from the store and the pain is so intense…..I cannot sit down, my legs are shaking so I take two percocets..wait for them to kick in nothing…I lay down and fall asleep for any hour or so…Still in pain…take two more percocets…Haven’t eaten anything for over 24 hours…run a bath with epsom salts and eat a yogurt. First time taking a bath….Pain is not so bad because I am medicated…get out the tub, try to play a game at the computer and couldn’t sit down long because the pain is bad…Lay back down on my bed and wait for the pills to work. By this time I have taken 6 perocets in 4 hours and the pain is not abating. Saw the surgical site for the first time on Saturday….OMG…I have a hole in my butt cheek!!!!…Tried to eat dinner and got extremely nauseous….I know it is a sideaffect of the pain medication but the pain is not going anywhere. Spent the majority of the weekend in Bed. Sunday is also the first day I had a bowel movement since the surgery…Not too bad…A little blood…

    I get to work on Monday and I call the doctor’s office…He is out on a family emergency…Are you kidding me???? I am in pain…I told the nurse that the pain medication is not working. She told me to give it a few days as I only had the surgery on Monday. Fair enough….I made it through half a day at work with only taking 2 percocets in the office. I took two before I left my house because I have 1 one hour drive. The first thing I noticed on Monday is that my legs are really stiff. I can raise my left leg too much which is probably because that is the side where I have a hole in my bum. I left work early on Monday because I had to go to traffic court. this is the one appearance I could not postpone. I get to the court…walked all the way from the parking lot, legs hurt/butt hurt, get to the court and forgot my car insurance papers…get up have to walk all the way back to the car again…Get back inside and have to wait 3 hours later I am done…Legs are throbbing butt is throbbing but I make it home. Take a hot bath with epsom salt as soon as I get through the door. The relief is more than welcomed. One thing I have noticed is that the seepage is getting a little heavier. No worries I have been doing my research….i have been using the bacitrin ointment and careful not to pull the string hanging out of my bum. i haven’t had a bowel movement today so I take two stool softeners I try to get some work done but sitting at the computer is a no go. I So I take two more stool softeners and call it a night.

    I woke up this morning to intense pain….I ran my morning bath and when I got it in stung like heck, I think it was because I hadn’t use the bacitrin before I fell asleep. I take one Percocet and 2 Aleve and start my drive to work….I am being a little bit more cautious because it is raining this morning. I get to work with a little bit of pain and when I get into the office and try to sit down the pain is so bad it shoots up my back. It felt like something tore and that is impossible. Around noon I had to move my bowels and today they were watery…Thank God No straining!!!

    I came on this board to see if there is any light at the end of the tunnel? I am pretty tolerant of pain but damned if this did not hit me like a freight train….

  179. Today is day 6 since the first surgery….I woke up this morning and the pain was not as bad as it has been I must admit. I take 1 percocet with some apple juice…Gotta stay away from the caffeine so I start my morning with juice and then get a coffee for my drive to work.

    There is a little discomfort where the string is. I run my bath as this has been my normal routine and it still stings a bit on the side where the incision is. I soak for 20 minutes then wash up so I can go to work. Get out of the bath and gently pat dry the area where the string is…Apply some bacitracin to the wound making sure I apply a liberal amount to the area where the string is and my anus because that area has been itching as of late. Get dressed and head out the door.

    Starting to drive to work and there is a slow throbbing pain. Not the sharp stabbing pain that I have been experiencing. It starts subsiding after about 20 minutes and the remainder of my drive to work is not as bad as it has been.

    I still have problems with walking. I have to park in a lot and walk a little to my office and it is slow going. Trying to make sure that my bag nor computer case hits my butt while I am walking. I make it to the office without incident only time will tell if I can make it through today with little or no pain….

  180. This is just madness….Everytime I have a bowel movement I get sharp pains all the way up my rectum to my tailbone. I want to scream!!! I actually cried this morning when I was taking my morning bath….The majority of the pain is coming from the draining septon. There is a little tenderness around the incision but the majority of the pain is coming from the spinchter muscle and the septon when it dries out…

  181. Dear Caged Bird
    My heart goes out to you and I will tell you my honest feelings about your situation.
    I am not a doctor but I have had a seton in place for 4 years (my choice – it is not usual to have a seton for that amount of time). If you read back over this website to my comments you will get an idea of my own journey.
    With respect to the people who have advised you, I must say that I am concerned that you are using epsom salts for bathing and not normal coarse salts?
    Also with respect, I am concerned that you used strong products on the actual wound such as hydrogen peroxide and bacitrin (sp?). In my humble opinion, the only thing worth using to keep this area clean and free of bacteria is regular washing with warm water with some coarse salt dissolved in it. Dry the area with the most germ-free thing possible (I used paper towels). Place cotton gauze squares against the wound and wear a sanitary pad to absorb drainage.
    The pain that you are having is to be expected with any procedure in this area of the body. The anal area is full of nerves which usually tell us that we need a bowel movement. Operations in this area are usually extremely painful.
    Also with respect as I realise that we all need to work, the amount of activity that you have been doing immediately after surgery has put a lot of pressure on your body. The reason we have pain in our bodies (no matter where that pain is) is an attempt from the body to force us to rest. Taking pain medication is necessary, but it is usually best to take pain medication and rest.
    I hope that my reply does not sound harsh because I can empathise with you so much and wish I lived near you and could give you a hug. I have been through sheer hell with my anal issues, but it does get better.
    May I also suggest that you look on this website and elsewhere and get some advice about healthy eating for your condition? Sometimes it is difficult to change the way we eat, but it can be vital if you have a bowel problem because what goes in our mouths is going to end up there. Recovery and pain relief can also be assisted by a strong immune system, and our immune systems rely on what we eat to be at their strongest.
    Positive thinking is also part of a strong immune system. I can see that you are a person who is capable of positive thoughts. Believe that you will get better, but be gentle on your body.
    You will be in my thoughts and prayers, Caged Bird. I honestly know how you feel and so do all the others who have posted on this site.
    Take care
    Diana

  182. Diana – I appreciate your comments because I like many people are not getting the full story from our healthcare providers…If I had found this site prior to my first surgery I might have been better prepared to deal with what I have had to face the last 9 days. I was not. When I went to the doctor on Friday I was really disconcerted because he was not the one who did the actual surgery and he had never done such a procedure (his words was he knows about it but he has never actually done one) and all he could tell me was that this is to be expected.

    I am not in as much pain as I have been and my only concern is that the discharge has not lightened one bit….it’s not as bloody as it first was but is had not decreased.

    I have been an advocate for healthy eating for many years….I don’t eat as much junk food as I have in the my twenties and I am very active…If you ever met me you would not believe that I am nearly 50 years old. I stay away from fried foods with the exception of an occasional indulgence of fried chicken and macaroni and cheese…that is my comfort food. I eat a lot of fruit and vegetables. The only thing I am still struggling with is drinking more water but since this procedure I can honestly say that has changed.

    I have been doing a lot of research on this condition and I am very optimistic that it will get better…I think that what took me by surprise is that this is not going to be a simple process. It might take years and multiple surgeries for this to be resolved and it is rather disheartening when you are told otherwise. However, I am very optimistic that I can beat this. I beat drug addiction over 20 years ago..so this should be a walk in the park (fingers crossed).

    The one thing I might have done differently is that had I found this site sooner I might have put it off until I accumulated enough time to take an entire week off from work as I was told by my surgeon that is was not necessary. He told me I would be able to return to work by Monday. Boy was that misinformation on the most highest level..Not only was I in pain but I was endangering myself because of the amount of pain medication I was taking combined with the amount of time I have to drive to and from work. I had moments where I was sleep driving and I could not focus on my work because of the pain.

    I appreciate your comment and I can always use a cyber hug.

    thank you

  183. So it’s now have been 9 day since my first procedure. The pain is subsiding. Not taking as much pain medication and Aleve has helped with the swelling. the only concern I have now is that the discharge has not subsided. The doctor did not give me any antibiotics so I do not know if it will decrease by the time I have my follow up on the 29th.

    I have been looking at the wound each day when I bath and I have taken pictures after the first week. The only concern I have is the pain (which is still pretty intense) after each bowel movement. I am not straining and I know the pain is a result of the cutting of the sphincter muscle which needs time to heal and the fact that I still have internal hemorrhoids does not help my condition but I have not had any blood in the stools for 6 days now.

    I have read most of the stories of our other survivors (I say survivors because we are surviving this dreadful condition) and at first it really scared me…I mean some of you guys have had 20+ procedures; and here I am being told by my surgeon that I only need one more, and I don’t know if I can take this at times. My whole life has changed in a matter of weeks and it is scary.

    But I am keeping a positive outlook and pray that the next week brings some positive changes. I hope before my next appointment on the 29th of this month that this horrible discharge subsides. It’s really a pain to have to continually wear sanitary napkins and to see this yucky substance…It does not have too much of a smell but it’s still not something I want to be a constant part of my life.

    Really at this point I just want to get some normalcy back.

  184. Diana — when you say normal coarse salts are you referring to table salt?

  185. So today is the first day I almost feel human. The only pain I have had today was when I had a bowel movement and it was not that bad and it did not last very long. The discharge does appear to be diminishing with very little blood. I am down to two Percocets a day. Yes!!!!

  186. Hello Caged Bird
    I am so glad to hear that you are feeling a bit more human and that the pain and discharge appear to be diminishing.
    Remember that pain is our body’s way of forcing us to rest, and we need to rest a lot following any operation or other physical challenge to our bodies.
    Pain should also never be ignored – I ended up with a peri-anal abcess the size of a tennis-ball (no exaggeration) because I ignored the pain that I was feeling in that area. I was very emotionally and physically overwhelmed at the time and chose to climb into bed without investigating the cause of the pain. I ended up having an emergency operation, and what followed I would not wish on my worst enemy.
    So I really understand what you are going through, Caged Bird. It is a joy to see that you are being positive.
    When I speak about “coarse salt”, I am talking about the rough salt that comes in larger blocks than the very refined table salt. It is sometimes called sea salt and when I was in the UK I managed to get it at Waitrose. Here in South Africa we can get it anywhere.
    Salt has incredible healing and cleansing properties. It just needs to be dissolved into the bath (not too much) and if you don’t have a bath, you can use a bowl or basin.
    I can fully understand how you yearn for “normalcy”. As fistula or abcess patients, we need to be very patient and very gentle on ourselves. You will get better, but it will take time. When you are better, you will know that you are stronger than anyone else you know because of what you have been through.
    My peri-anal issues gave me the ability to be a very good medical person because people can sense that whatever they tell me (even below-the-belt issues) will be received sympathetically and confidentially by me. I see it as a gift.
    Good luck, Caged Bird. Whatever your condition presents along the way, stay as positive as you can and believe that you are going to win.
    Take care
    Diana

  187. Diana — you are awesome!!!! The putrid smell is gone….It was there yesterday but I did take a bath in the morning with Epsom salt. Last night I did not use any and the smell is completely gone. I am going to Walgreen’s after work tonight and get the Sea Salt….

    Today is the first totally pain free day I have had in 13 days….there drainage is not a bad and there is no horrific smell. For the past few days it smelled liked something died but today as I did not soak with Epsom salts there is no smell. I was able to shower this morning and really clean the area. I looked at the wound and it is smaller than it was last week. I am getting some itching but that is to be expected.

    I go back to see the surgeon next Friday…Hopefully we can talk about the second procedure to end this. He told me it’s either going to fall on the 17th or 31st of October. Just have to keep faith that everything will be resolved with the second surgery….I already lost my summer (no pools/no beaches), I don’t want to lose the entire fall and winter.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 239 other followers

%d bloggers like this: