I have adominal fistula, currently with a PIC line for fluids and nutrients.
It has been 2 months and still hasn’t healed.
I’m going thru a massive depression and very desperate.
I feel like I’m losing everything including my family
SOMEONE PLEASE HELP
What do I need to do?
Hi Mike,
I know what you are going through. I have adominal fistulas also. I have been on TPN as well. I am patting my stomach to wipe away the ooz as it is leaking as I am typing to you. Keep strong and Positive Hope all goes well for you. i am trying to find other opitions to heal them. I have been on Cimzia and 6mp unfortantly they havent work for me. I am on Humaria now, hopefully this will work.
Best Wishes
David
I have fistula but hesitate to go for Humaria because not sure if it will work and don’t like the side-effect. Considering now you have had that medicine for couple month, could you let me know how it’s going?
Hi David, this is an online support group, people from all over the world are using it, including lots of people from the States 🙂 The founder (me) is based in New Zealand. Thanks for joining us, there are lots of people on here who can help and give you advice 🙂
Hi Me Fistula support online,
Thanks for the reply i am going to join the site now and look at everything on the site. it feels so good to finally talk to someone who is going through what i am going through. I thought i was the only person with this 🙂
David 🙂
I used to think that too, that’s why I created this website! It’s amazing how many people are going through this, and how little information there is out there for it. So here we all are! 🙂
i have a fisula too!!! Two holes that wont close up after two surgeries. I am scarred all the time. they sent me home to eat normal food. I was on tpn for a month and it closed up. but as soon as i got home it opened up and because i don’t have insurance the hospital i was in denies that i need their help. Ive thought about killing myslelf. im going through a divorse and havent seen my kids because im too sick for three months. im sadd. what kind of food will stay in my body and why am i so thirsty???? the hospital says im not dehydrated and there is nothing they can do for me. And they won’t do the surgery i need to close up the hole in my stomach.
Hi everyone, i am suffering from supralevator abscess and fistula. Please let me know if there is any treatment available for this in Nepal or in Bangkok. I am loosing everything because of this. It has been 2 years of pain.
I’m so happy to have found this site – I had an peri-anal abscess drained in late August, 10 weeks later I have a fistula, that will have a Seton Drain installed in a few weeks. Although after reading this, I’m terrified. I do not have Crohns or IBS, just lucky I guess. David – I’m in the states; but it’s nice to have worldwide “friends” with the same issues…. I’m scared now that the Seton won’t work….
Hi Coco, it sounds as if we have a similar challenge.
I’ve found that the mantra for living with a fistula helps me deal with the anxiety – ” i am safe. I trust fully in the process of life. Life is for me.”
Hi Coco,
i hsve the same situation like yours now, three drained abscesses that drauned out and fistula that i have seton with for 3 weeks.
are you healed ? what surgery and method done on you ?
Cheers
Adrian Sydney
Hi Adrian,
Funny your post came through this morning – just had a seton surgery this morning – am 4 hours post op. My first surgery in Nov 2013 I did not have a seton installed, my doctor used Fibrin Glue, and it healed fine. In March 2014, I had another abscess drained; and a fistula just developed about 3 weeks ago. So, now I have my first seton and I’m a little scared of the process, but am hopeful it be the end of it…. Thanks for reaching out and let me know how your seton heals.
~ Coco
I have suffered from a perianal abscess now for 28 yrs, in the early days I went into hospital a few times to have it lanced and drained and packed
in theatre. But it would always come back within weeks. One bad episode around 25yrs ago I went to the doctors for antibiotics, The doctor took me in the treatment room that was adjacent to the waiting room, under the pretence of examining the abscess. He then proceeded to lance it there and then. I am sure you can imagine the pain he caused as he used nothing to numb any pain. a packed waiting room just at the other side of the door heard my screams. The doctor then told me, maybe I should address my hygiene practices, as this is a dirty persons illness. ( I used to and still do bathe twice a day, plus when I go to the loo I always wash the area after wiping this is something I have always done) After this appointment I changed my doctor, but vowed I would never see a doctor with this complaint ever again. I would get part taken courses of antibiotics from family and friends, or go to the new doctor with the pretence of other illnesses to get antibiotics. failing that I would just ride out the fever and sit in hot salt baths for hours on end, these episodes take place every three to four weeks. Last week I had a particularly bad episode of abscess coupled with a very bad fever, I couldn’t stand up because of the pains in the groins of my legs and also in the legs, I was shaking and going hot and cold, My daughter happened to call and saw how bad I was, she took me to A&E to my embarrassment I was kept in, and taken to theatre, where I have had the seton procedure, but since coming home I have suffered from leakage of the bowel, and more than normal toilet visits, I would normally only visit the loo once or maybe twice a day now I am going at least seven to ten times a day, where I am suffering from very loose stools. its that bad I am too embarrassed to go for my district nurse appointment. as anyone else suffered this type of bowel problem after the procedure ?? is it normal and will it calm down ?? or have I done damage over the years of self treatment ???
pol
Hi Polly Pixie, thank you for sharing about how ill you have been. Thank goodness your daughter was there for you, you must be very proud of her.
My advice is not to be embarrassed, many health professionals do not understand the challenges that we are living with, but help us find the information we need regarding changes to diet, etc. Many are aware of alternative local health practitioners who can help balance other areas of our lives.
This web site is really helping advance understanding of our options and ways to effectively live with fistula.
It is so hard to talk to people about this and i think that many of us feel we are battling on our own.
i hope that you get answers to some of your questions, both locally and online.
i have mentioned the fistula mantra in other places:- “I am safe. I trust fully in the process of life. Life is for me”
I am suffering from a fistula resulting from cancer and radiation therapy. I am delaying surgery as there is no guarantee it will work. Has any one used diet to help? I have issues every three to four weeks that then result in a urinary tract infection. Any help?
Wow, amazing site. I have a rectal/vaginal fistula and the infection resulted in cancer. I am cancer free and no longer work, but am able to take care of the symptoms better. I go to Mayo Clinic in Minnesota. I have not had repair surgery because its not guaranteed to work and could make things worse as I’m only 45. This site makes me feel like I’m not alone. Thank you.
Hello, I am so glad to have found this site after much searching. I have a vaginal-rectal fistula caused by my pelvic surgery in 2013 for cervical cancer. The fistula was discovered one month after the surgery. I was on TPN for two months and the fistula began to heal, but my oncologist wanted to continue with radiation and chemo so I elected to have a temporary colostomy placed to take the pressure off the colon. Now, I am having more and more “normal” bowel movements throught the rectum and this has caused the fistula to reopen I believe. I have not been seen my by surgeon yet because frankly I do not want surgery, but I do have an appointment at the end of July. In the meantime, I am trying everything to heal the fistula, slow the colon movements, and basically get more healthy. I need to know if anyone has found a home/natural remedy that actually works for healing fistulas. If there is anyone who has any suggestions for me to heal this fistula, please respond. I use sitz baths with baking soda and salts, I eat increased proteins and my diet is very “non-white” no sugar, no white flour, no processed foods at all. I think I’m a good candidate to heal naturally, so I need some extra help. Thank you.
I sympathize with your situation. I wish I could tell you something you want to hear but the only thing that corrected my fistula was surgery. I did hear they can take weeks or months to heal or sometimes never. I had a abdominal fistula that I waited for 3 months to heal on its own and the last day of it was just like the first day. I avoided surgery at all costs but I had to do it. I had major bowel reconstruction which caused much pain and rehabilitation during the healing process but about 6 months later I FEEL AS GOOD AS NEW. Thank God! Whatever you do ,
Be patient- time will heal- secret home remedies just eases the symptoms not the problem. But there are stories out there that heal I just didn’t experience it. It’s a terrible way to live so if you have a surgeon that can diagnose and fix the problem- schedule that appt!
All my best and good luck
Hi Mike – I too have abdominal fistula and not coping very well – would you be willing share experiences? As your post is a few months old I just wanted to check you were still on this site, thank you
My sister was just given 6 months to live. She had a major surgery done in 2013 and after her surgery that’s when she became very sick. She has 2 fistulas that are not healed. She is on TPN for nutrients she has 4 drains connected in her abdominal area. She is septic the drs tell her that her disease is rare and there is no cure. It seem like from day one when she started getting sick it’s all been negative. She is in and out of the hospital due to she gets infectiona and has fever. It’s routine now where they admit her give her antibiotics keep her for a few days and send her home. The Dr’s say the antibiotics will eventually stop working for her. I am not sure if anyone has the same kind illness but from what I am reading I see alot people on here are suffering from the same iilness. Has anyone gotten better after being sick for a few years. My sister is also not a surgery candidate. Please any information I will be grateful.
My sister had a very similar problem after surgery. She was 75 when this happened. She is now 80 and while the last year she hasn’t had much of a quality of life. She has a vaginal fistula and chose not to have surgery. She has been taking two antibiotics to help control infection and has taken them for five years. The infectious disease doctor said she had to have surgery to correct it, but the surgeon said that there was no guarantee she would be any better off. My sister went through a lot of what your sister has been experiencing. Not sure if her poor quality of life is due to other health problems as she had cancer. Hope this was helpful.
Hi Jane,
Thank you for responding. My sister is 38 years old she’s always been healthy. She delevopled a tumor non cancerousin her stomache in 2013 in which she had surgery to remove the tumor. The Dr also did a hysterectomy and removed her appendix all at once. Which caused her body to go into shock. It’s now 2018 and there is nothing Dr’s say they can do for her. Although she does take antibiotics only when she has fevers she cannot take them daily as her body will become immune and the the antibiotics will not work. She had her fistulas in her intestine. I just feels hopeless at this point. I appreciate your feedback as I write this is am in tears. I know only a miracle will save my sister.
Jane,
What’s kind of antibiotics if you don’t mind me asking. It’s going on five years for my sister. She’s just suffering everyday. It’s hurts so much to see her in pain she does not want to die. We don’t want this either.
Hi I had a loose seton put in July 2018, just when my children broke up for there school holidays! As like some of the comments I to suffered the same symptoms. I wasn’t given any after care help, just tramadol and told to come back if there was any heavy bleeding. Luckily no heavy bleeding. At first I had toilet paper between my cheeks, which as as many of you might know when changing gets stuck!!
After about 10 weeks I started having trouble with the seton scratching and making me sore, so I went to my GP. Not knowing anything about the seton I asked if it would be possible to trim the stitch to make it more comfortable. She said it shouldn’t be a problem, I said are you sure, yes not a problem she said!!..
Well as you can imagine she couldn’t have been more sorry, not as much as I was. Well I had to wait till late December before they replaced it, and telling me in the process that I shouldn’t have let anyone touch it!! Like I new that. By the way whilst waiting for the replacement I developed another track☹. I asked the surgeon if he could do the seton looser as the last one felt like it was cutting me in half, not a problem he said. Well talk about one extreme to another I can put my finger through it! Anyways guys its been 6 months now and its draining like crazy, I now ware a dressing of which I have to double up and change 5 to 6 times a day. I have had a few embarrassing moments were its soaked through and soreness. And how could i possibly forgot farts escaping out the track now that was and still is a painful shock!! I started with unbelievable itching above seton in the area were thought I had another track due to the hard track like lump under the skin. Well I change my dressing (again) to see 2 Mark’s on dressing!! Gutted. My appointment for scan came up as well, so now waiting for next appointment to see consultant, I think I know what the result of that’s going to be.
Can you believe that GP cutting the first one out when she didn’t know what she was looking at!!.. well thats my seton story so far. Ps I would like to add I have a very loving supportive family which without I would be struggling a lot more. Fell running is my second love and my family has kept me positive that there is light st the end of the tunnel and I will run again. I feel so better to have found other fellow seton suffers who know how this can affect our lives.
Hi everyone,
My name is Daniel and I’ve had perianal abscesses for 20 years. I have finally found a doctor that has referred me to a surgeon and I now have a seton stitch. It has been 3 weeks and I’m still in pain. I know the seton is doing it’s job as there is a lot of puss draining out. I’m just so sick of the pain.
I’ve just been diagnosed with a recto-vaginal fistula and Crohn’s Disease. I have been put on Azathioprine, and am starting Infliximab infusions next week. I am just wondering if there are any specific products, etc., that are recommended to help with the discharge?
My Son recently had this surgery about 2 months now, he went in today for a check up, he had a fistula, so he said that the seton was twisted, my Son said he was in too much pain to ask how it got like that, so I am also asking, I hate that he is in so much pain, I hope you can help him
Had seton fitted high in sphincter muscle, not told what type believe just to help drain fistula away . How do prevent the string knot going inside hole in my cheek but which seems quite big( where my abscess was) not in too much pain but sore . Take sitz baths a lot as suffer diarrhoea, got have endoscopy soon, but delaying that for now.
I am on my forth seton in 3yrs, due to mistakes by GP, ie cut out whilst packing cavity. Which I might say was due to abcess forming whilst waiting for a replacement seton! But hey before I go completely off on one my story continues to this day😔.
I have, worst luck had a lot of experience with the stitch going in the hole😖. All you can really do is keep pulling it away from the opening. My stitch is just long enough to slightly stick it to the tape of my dressing. This might sound a bit dodgy, but if your careful you can stop it from pulling when removing dressing. I hope this helps, Good luck get well soon.
FISTULA SUPPORT ONLINE 
I have adominal fistula, currently with a PIC line for fluids and nutrients.
It has been 2 months and still hasn’t healed.
I’m going thru a massive depression and very desperate.
I feel like I’m losing everything including my family
SOMEONE PLEASE HELP
What do I need to do?
Mike foley - July 9, 2013 at 9:59 am |
Hi Mike,
I know what you are going through. I have adominal fistulas also. I have been on TPN as well. I am patting my stomach to wipe away the ooz as it is leaking as I am typing to you. Keep strong and Positive Hope all goes well for you. i am trying to find other opitions to heal them. I have been on Cimzia and 6mp unfortantly they havent work for me. I am on Humaria now, hopefully this will work.
Best Wishes
David
David Sytsma-Sherman - September 1, 2013 at 11:43 am |
Hi David,
I have fistula but hesitate to go for Humaria because not sure if it will work and don’t like the side-effect. Considering now you have had that medicine for couple month, could you let me know how it’s going?
Nelson
Nelson - December 29, 2013 at 12:56 pm
Hi is there a Support Group located in The United States? I have Fistulizing Crohns Disease and I have been looking for a group like this
David Sytsma-Sherman - September 1, 2013 at 11:34 am |
Hi David, this is an online support group, people from all over the world are using it, including lots of people from the States 🙂 The founder (me) is based in New Zealand. Thanks for joining us, there are lots of people on here who can help and give you advice 🙂
fistulasupportonline - September 1, 2013 at 11:38 am |
Hi Me Fistula support online,
Thanks for the reply i am going to join the site now and look at everything on the site. it feels so good to finally talk to someone who is going through what i am going through. I thought i was the only person with this 🙂
David 🙂
David Sytsma-Sherman - September 1, 2013 at 11:48 am
I used to think that too, that’s why I created this website! It’s amazing how many people are going through this, and how little information there is out there for it. So here we all are! 🙂
fistulasupportonline - September 1, 2013 at 11:57 am
i have a fisula too!!! Two holes that wont close up after two surgeries. I am scarred all the time. they sent me home to eat normal food. I was on tpn for a month and it closed up. but as soon as i got home it opened up and because i don’t have insurance the hospital i was in denies that i need their help. Ive thought about killing myslelf. im going through a divorse and havent seen my kids because im too sick for three months. im sadd. what kind of food will stay in my body and why am i so thirsty???? the hospital says im not dehydrated and there is nothing they can do for me. And they won’t do the surgery i need to close up the hole in my stomach.
melissa - January 16, 2014 at 1:49 pm
Hi everyone, i am suffering from supralevator abscess and fistula. Please let me know if there is any treatment available for this in Nepal or in Bangkok. I am loosing everything because of this. It has been 2 years of pain.
nis - January 2, 2014 at 5:34 pm |
Hi friend,
You can find the colorectal surgeon in singapore
that can do the treatmentof access and fistula
kelvin
Kelvin - July 4, 2014 at 2:40 am
I’m so happy to have found this site – I had an peri-anal abscess drained in late August, 10 weeks later I have a fistula, that will have a Seton Drain installed in a few weeks. Although after reading this, I’m terrified. I do not have Crohns or IBS, just lucky I guess. David – I’m in the states; but it’s nice to have worldwide “friends” with the same issues…. I’m scared now that the Seton won’t work….
Coco - November 8, 2013 at 8:38 am |
Hi Coco, it sounds as if we have a similar challenge.
I’ve found that the mantra for living with a fistula helps me deal with the anxiety – ” i am safe. I trust fully in the process of life. Life is for me.”
best wishes, Maeve
Maeve - November 27, 2013 at 11:15 am |
Hi Coco,
i hsve the same situation like yours now, three drained abscesses that drauned out and fistula that i have seton with for 3 weeks.
are you healed ? what surgery and method done on you ?
Cheers
Adrian Sydney
AdrianSydney - June 24, 2015 at 8:47 am |
Hi Adrian,
Funny your post came through this morning – just had a seton surgery this morning – am 4 hours post op. My first surgery in Nov 2013 I did not have a seton installed, my doctor used Fibrin Glue, and it healed fine. In March 2014, I had another abscess drained; and a fistula just developed about 3 weeks ago. So, now I have my first seton and I’m a little scared of the process, but am hopeful it be the end of it…. Thanks for reaching out and let me know how your seton heals.
~ Coco
Coco - June 24, 2015 at 10:34 am
I have suffered from a perianal abscess now for 28 yrs, in the early days I went into hospital a few times to have it lanced and drained and packed
in theatre. But it would always come back within weeks. One bad episode around 25yrs ago I went to the doctors for antibiotics, The doctor took me in the treatment room that was adjacent to the waiting room, under the pretence of examining the abscess. He then proceeded to lance it there and then. I am sure you can imagine the pain he caused as he used nothing to numb any pain. a packed waiting room just at the other side of the door heard my screams. The doctor then told me, maybe I should address my hygiene practices, as this is a dirty persons illness. ( I used to and still do bathe twice a day, plus when I go to the loo I always wash the area after wiping this is something I have always done) After this appointment I changed my doctor, but vowed I would never see a doctor with this complaint ever again. I would get part taken courses of antibiotics from family and friends, or go to the new doctor with the pretence of other illnesses to get antibiotics. failing that I would just ride out the fever and sit in hot salt baths for hours on end, these episodes take place every three to four weeks. Last week I had a particularly bad episode of abscess coupled with a very bad fever, I couldn’t stand up because of the pains in the groins of my legs and also in the legs, I was shaking and going hot and cold, My daughter happened to call and saw how bad I was, she took me to A&E to my embarrassment I was kept in, and taken to theatre, where I have had the seton procedure, but since coming home I have suffered from leakage of the bowel, and more than normal toilet visits, I would normally only visit the loo once or maybe twice a day now I am going at least seven to ten times a day, where I am suffering from very loose stools. its that bad I am too embarrassed to go for my district nurse appointment. as anyone else suffered this type of bowel problem after the procedure ?? is it normal and will it calm down ?? or have I done damage over the years of self treatment ???
pol
Polly Pixie - November 19, 2013 at 4:53 pm |
Hi Polly Pixie, thank you for sharing about how ill you have been. Thank goodness your daughter was there for you, you must be very proud of her.
My advice is not to be embarrassed, many health professionals do not understand the challenges that we are living with, but help us find the information we need regarding changes to diet, etc. Many are aware of alternative local health practitioners who can help balance other areas of our lives.
This web site is really helping advance understanding of our options and ways to effectively live with fistula.
It is so hard to talk to people about this and i think that many of us feel we are battling on our own.
i hope that you get answers to some of your questions, both locally and online.
i have mentioned the fistula mantra in other places:- “I am safe. I trust fully in the process of life. Life is for me”
Best wishes, Maeve
Maeve - November 27, 2013 at 11:34 am |
I am suffering from a fistula resulting from cancer and radiation therapy. I am delaying surgery as there is no guarantee it will work. Has any one used diet to help? I have issues every three to four weeks that then result in a urinary tract infection. Any help?
janekrastel - May 10, 2014 at 11:41 pm |
Wow, amazing site. I have a rectal/vaginal fistula and the infection resulted in cancer. I am cancer free and no longer work, but am able to take care of the symptoms better. I go to Mayo Clinic in Minnesota. I have not had repair surgery because its not guaranteed to work and could make things worse as I’m only 45. This site makes me feel like I’m not alone. Thank you.
Kristyn - November 20, 2014 at 9:50 am |
Hello, I am so glad to have found this site after much searching. I have a vaginal-rectal fistula caused by my pelvic surgery in 2013 for cervical cancer. The fistula was discovered one month after the surgery. I was on TPN for two months and the fistula began to heal, but my oncologist wanted to continue with radiation and chemo so I elected to have a temporary colostomy placed to take the pressure off the colon. Now, I am having more and more “normal” bowel movements throught the rectum and this has caused the fistula to reopen I believe. I have not been seen my by surgeon yet because frankly I do not want surgery, but I do have an appointment at the end of July. In the meantime, I am trying everything to heal the fistula, slow the colon movements, and basically get more healthy. I need to know if anyone has found a home/natural remedy that actually works for healing fistulas. If there is anyone who has any suggestions for me to heal this fistula, please respond. I use sitz baths with baking soda and salts, I eat increased proteins and my diet is very “non-white” no sugar, no white flour, no processed foods at all. I think I’m a good candidate to heal naturally, so I need some extra help. Thank you.
Rebecca Jo Holmes - June 29, 2015 at 3:57 am |
Rebecca-
I sympathize with your situation. I wish I could tell you something you want to hear but the only thing that corrected my fistula was surgery. I did hear they can take weeks or months to heal or sometimes never. I had a abdominal fistula that I waited for 3 months to heal on its own and the last day of it was just like the first day. I avoided surgery at all costs but I had to do it. I had major bowel reconstruction which caused much pain and rehabilitation during the healing process but about 6 months later I FEEL AS GOOD AS NEW. Thank God! Whatever you do ,
Be patient- time will heal- secret home remedies just eases the symptoms not the problem. But there are stories out there that heal I just didn’t experience it. It’s a terrible way to live so if you have a surgeon that can diagnose and fix the problem- schedule that appt!
All my best and good luck
Mike - July 8, 2015 at 10:48 pm |
Hi Mike – I too have abdominal fistula and not coping very well – would you be willing share experiences? As your post is a few months old I just wanted to check you were still on this site, thank you
baddytum - October 24, 2015 at 9:50 am |
My sister was just given 6 months to live. She had a major surgery done in 2013 and after her surgery that’s when she became very sick. She has 2 fistulas that are not healed. She is on TPN for nutrients she has 4 drains connected in her abdominal area. She is septic the drs tell her that her disease is rare and there is no cure. It seem like from day one when she started getting sick it’s all been negative. She is in and out of the hospital due to she gets infectiona and has fever. It’s routine now where they admit her give her antibiotics keep her for a few days and send her home. The Dr’s say the antibiotics will eventually stop working for her. I am not sure if anyone has the same kind illness but from what I am reading I see alot people on here are suffering from the same iilness. Has anyone gotten better after being sick for a few years. My sister is also not a surgery candidate. Please any information I will be grateful.
Sarah - January 18, 2018 at 8:14 am |
My sister had a very similar problem after surgery. She was 75 when this happened. She is now 80 and while the last year she hasn’t had much of a quality of life. She has a vaginal fistula and chose not to have surgery. She has been taking two antibiotics to help control infection and has taken them for five years. The infectious disease doctor said she had to have surgery to correct it, but the surgeon said that there was no guarantee she would be any better off. My sister went through a lot of what your sister has been experiencing. Not sure if her poor quality of life is due to other health problems as she had cancer. Hope this was helpful.
Jane Krastel - January 18, 2018 at 3:01 pm |
Hi Jane,
Thank you for responding. My sister is 38 years old she’s always been healthy. She delevopled a tumor non cancerousin her stomache in 2013 in which she had surgery to remove the tumor. The Dr also did a hysterectomy and removed her appendix all at once. Which caused her body to go into shock. It’s now 2018 and there is nothing Dr’s say they can do for her. Although she does take antibiotics only when she has fevers she cannot take them daily as her body will become immune and the the antibiotics will not work. She had her fistulas in her intestine. I just feels hopeless at this point. I appreciate your feedback as I write this is am in tears. I know only a miracle will save my sister.
Sarah - February 6, 2018 at 6:50 am
Please remove from your email addresses. Rebecca died a year and a half ago. Thank you.
Mary Lee Webb - February 6, 2018 at 3:30 pm
Jane,
What’s kind of antibiotics if you don’t mind me asking. It’s going on five years for my sister. She’s just suffering everyday. It’s hurts so much to see her in pain she does not want to die. We don’t want this either.
Sarah - February 6, 2018 at 6:57 am
Hi I had a loose seton put in July 2018, just when my children broke up for there school holidays! As like some of the comments I to suffered the same symptoms. I wasn’t given any after care help, just tramadol and told to come back if there was any heavy bleeding. Luckily no heavy bleeding. At first I had toilet paper between my cheeks, which as as many of you might know when changing gets stuck!!
After about 10 weeks I started having trouble with the seton scratching and making me sore, so I went to my GP. Not knowing anything about the seton I asked if it would be possible to trim the stitch to make it more comfortable. She said it shouldn’t be a problem, I said are you sure, yes not a problem she said!!..
Well as you can imagine she couldn’t have been more sorry, not as much as I was. Well I had to wait till late December before they replaced it, and telling me in the process that I shouldn’t have let anyone touch it!! Like I new that. By the way whilst waiting for the replacement I developed another track☹. I asked the surgeon if he could do the seton looser as the last one felt like it was cutting me in half, not a problem he said. Well talk about one extreme to another I can put my finger through it! Anyways guys its been 6 months now and its draining like crazy, I now ware a dressing of which I have to double up and change 5 to 6 times a day. I have had a few embarrassing moments were its soaked through and soreness. And how could i possibly forgot farts escaping out the track now that was and still is a painful shock!! I started with unbelievable itching above seton in the area were thought I had another track due to the hard track like lump under the skin. Well I change my dressing (again) to see 2 Mark’s on dressing!! Gutted. My appointment for scan came up as well, so now waiting for next appointment to see consultant, I think I know what the result of that’s going to be.
Can you believe that GP cutting the first one out when she didn’t know what she was looking at!!.. well thats my seton story so far. Ps I would like to add I have a very loving supportive family which without I would be struggling a lot more. Fell running is my second love and my family has kept me positive that there is light st the end of the tunnel and I will run again. I feel so better to have found other fellow seton suffers who know how this can affect our lives.
Stephen Ashford - June 15, 2019 at 12:30 pm |
Hi everyone,
My name is Daniel and I’ve had perianal abscesses for 20 years. I have finally found a doctor that has referred me to a surgeon and I now have a seton stitch. It has been 3 weeks and I’m still in pain. I know the seton is doing it’s job as there is a lot of puss draining out. I’m just so sick of the pain.
tremayneh - November 11, 2019 at 9:52 am |
Hi,
I’ve just been diagnosed with a recto-vaginal fistula and Crohn’s Disease. I have been put on Azathioprine, and am starting Infliximab infusions next week. I am just wondering if there are any specific products, etc., that are recommended to help with the discharge?
Rosemary - November 25, 2020 at 6:51 pm |
My Son recently had this surgery about 2 months now, he went in today for a check up, he had a fistula, so he said that the seton was twisted, my Son said he was in too much pain to ask how it got like that, so I am also asking, I hate that he is in so much pain, I hope you can help him
Consuella floyd - March 23, 2022 at 10:58 am |
Had seton fitted high in sphincter muscle, not told what type believe just to help drain fistula away . How do prevent the string knot going inside hole in my cheek but which seems quite big( where my abscess was) not in too much pain but sore . Take sitz baths a lot as suffer diarrhoea, got have endoscopy soon, but delaying that for now.
Alison reynolds - November 14, 2022 at 10:06 pm |
I am on my forth seton in 3yrs, due to mistakes by GP, ie cut out whilst packing cavity. Which I might say was due to abcess forming whilst waiting for a replacement seton! But hey before I go completely off on one my story continues to this day😔.
I have, worst luck had a lot of experience with the stitch going in the hole😖. All you can really do is keep pulling it away from the opening. My stitch is just long enough to slightly stick it to the tape of my dressing. This might sound a bit dodgy, but if your careful you can stop it from pulling when removing dressing. I hope this helps, Good luck get well soon.
Stephen Ashford - November 25, 2022 at 9:38 pm |