173 Responses
You must sign in to take this survey.
×

Question - Have any of you "pouchers" developed a fistula after your take down? Just Curious.

Had my colectomy in Feb 2010 and take down in Mar 2010.  Was actually OK for the first few months, butt (pun intended) I developed a fistula that caused me severe rash and pain for probably 8 months or so and it wasn't until I got scoped that we realized I had a pretty sizable fistula that was causing me a severe rash (diaper rash on steroids) and always giving me the sensation that I wanted to defecate.  So my surgeon put a plug in the fistula and did some other magic.  That was almost five years ago.

 

YES
NO
Other
Posted by Downtown ·

Comments (19)

Newest · Oldest · Popular

I’ve had 1 fistula. It may have been the worst pain I have ever experienced. Its location was right beside the rectum; so, every time I had a bowl movement, it hurt! Both when I actually had the movement and then when I wiped.

When it finally broke, it was the night before I went to the surgeon, the pain was gone and the mess was incredible, but I felt so much better! The surgeon packed it and made an appointment with my gastroenterologist. I had surgery 3 days later. A string was tied through it and my back through my rectum. Slowly the string worked its way out and 2 ½ months later, it fell out.

I developed a fistula about 15 years after my initial J Pouch surgery and it ended up becoming abscessed.  It was very painful and I ended up losing quite a bit of weight. I didn't want to eat because the pain was so bad with the digestive process.  I had it surgically repaired and then developed a 2nd one.  I had the 2nd fistula repaired as well and haven't had any problems since. (This was back in 2001 and 2003).   

I had my surgery a little over 21 yrs. ago.  Only problems were the occasional blockage from eating peanuts. But then,... I had a series of events around 2010. Ulcer, pouchitis, blockage!  My doctor said I was eating too healthy!!  Now, I am not as strict on the food an balance it with exercise.

I had an iliosotomy performed a year ago.  It took a while to adjust to it and to recover, but I have not regretted it at all.  Don't continue to put yourself through all of these problems.  My pouch was so bad that the surgeon had to literally scrape it off my bladder. Even though my UC was cured, the doctors say you still have the disease process that can effect your pouch.  I was sick every day for the last 10 years of the 20 that I had my pouch.  Prayers. and I will be glad to answer any questions.

Homie

J pouch was solid for about 13 years and then came the pouchitis which slowly developed into antibiotic-dependent chronic pouchitis (or CD of the pouch -- gastroenterologist is unsure). I have been pouch sick for almost 14 years. About two years ago I developed a baseball sized perianal abscess which spontaneously drained (almost drowned in the bloody pus, must have been half a liter). An abscess develops twice a month now. If I take metronidazole it drains more quickly. My butt looks like a shotgun target, small holes where the abscesses have drained. Been on prednisone, cipro, metro, cortisone/Canasa enemas and suppositories, Humira (stopped all abscess formation but only mildly helpful with pouchitis, but then insurance stopped paying!), Remicade (current) with continuing cipro and metro. Also, I have been using tap water enemas for the past year and it has improved my daily routine. It seems I can evacuate most of the stool in my small intestine (10 to 15 100ml enema bottle, 1/3 at a time) which then provides 6 to 8 hours of relief. But the severe pain persists. Unfortunately (or fortunately) I see an ileostomy down the road. Can't continue like this.

I had an anal abscess that turned into a fistula (or the other way around?) about two years after takedown. They put a seton in, and I lived with that for a couple of years.  My surgeon was worried about it being Crohns.  After no more fistulas, he agreed to operate and laid the fistula open.  That was last winter.  It has healed well.  My control may be slightly less than it was, but is still good.

I had a rectal-vaginal fistula which caused waste to drain into vaginal area.  Painful, Cleveland Clinic did a skin patch which has worked for about 22 years now.  My fistula showed up three months after my first surgery which was in 1992-93.  I have had a long range of hurdles but also great Doctors since I now live I n NC.
I consider myself a very seasoned j-pouches.  I have been through lots and at times wish I had not had the surgery.  In reality, I could not go back.  Since cleaning up my diet, I have had MUCH LESS PROBLEMS.
I had a pouch for 20 years with all kinds of problems.  I finally got so tired of fistulas, pouchitis, fissures, etc. that I decided to have my pouch removed.  I went to an illiosotomy and it has taken a year for me to completely get over my surgery.  I am so glad that I finally bit the bullet and had it done.  My life is sooo much better now.  Praying you will find relief.
Originally Posted by eRoxanne:

I had about 12 years of a dream pouch then suddenly developed refractory pouchitis, have had it for a year now.  I thought I was getting a vaginal cyst and had horrific rectal pain but didn't know it was actually a recto-vaginal fistula until my surgeon saw it.  Have been wearing a seton for a year and absolutely loathe it but fear the abcess will return if I remove it while pouchitis and cuffitis are active.  What hasn't worked so far:  Humira, all antibiotics, cortisone enemas, Canasa suppositories.  Am on round 3 dose of Remicade, with no improvement yet.  Am on 9mg daily Entocort, which is controlling symptoms somewhat.

 

I had a fistula on and off for years.  Found out when my gyn told me I had a yeast infection that the yeast infection had gotten into the fistula and was keeping it open.  Diflucan helped, but I still had it when I got rid of my j-pouch and went to an illiosotomy.   The surgeon cleaned it out and sewed it together when he took my pouch.  So very glad I had the surgery.  Life is good.

Had UC for 23 years

J-pouch for 20 years

Illiosotomy for the last year.

 

I learned about fistulas recently. I've had my J-Pouch since 2010.  Fistulas began November 2014. Abscesses that lead to Fistula are just fistulas. Fistulas that develop in the absence of the abscess is a sign of Crohn's.  I was diagnosed with Crohn's. 

I have had my pouch for about 20 years and developed a 2 RV fistulas 1.5 years ago.  So far it has not caused me much of a problem.  When I used to do wheatgrass implants thru the rectum I would see a bit of the green coming out of the vagina afterwards and it was very strange. 

I had about 12 years of a dream pouch then suddenly developed refractory pouchitis, have had it for a year now.  I thought I was getting a vaginal cyst and had horrific rectal pain but didn't know it was actually a recto-vaginal fistula until my surgeon saw it.  Have been wearing a seton for a year and absolutely loathe it but fear the abcess will return if I remove it while pouchitis and cuffitis are active.  What hasn't worked so far:  Humira, all antibiotics, cortisone enemas, Canasa suppositories.  Am on round 3 dose of Remicade, with no improvement yet.  Am on 9mg daily Entocort, which is controlling symptoms somewhat.

I have had my J-Pouch for about 12 yrs before the fistula showed up, spent 18 mos trying to treat it, finally went back to ileostomy to allow the fistula to heal completely. Now I have to decide which way to go ( pun ), J-Pouch or bag. I just can't imagine having to deal with another fistula, so I'm leaning toward the bag now that I can finally sit and lay down comfortably. My research came up with fistulas having a high percentage of return. If anyone has any thoughts on this please contact me. Thanks

I had my takedown about 10 years ago.  And developed a fistula and abcess about 3 years after that.  It was too painful to even sit.  The doc put in the drain and the plug and it kept coming back.  Fast forward to now and there are two that ebb and flow, get better then worse then better.  So I have just figured out how to deal with it.

A woman I know had BCIR surgery to do away with outer appliance.  She got a fistula about five or six months after surgery.  I got the same surgery a  month before her and I have not had any problems with my BCIR.  My surgery was December, 2014.

I have had two fistulas which have caused abscesses. I was diagnosed with UC in 2008, had a colectomy in 2009 and Jpouch in 2010. Then in 2014 I started getting abscesses and the next scope showed I actually have Crohns and now perianal fistula disease. I have ceton put on the first fistula and that has helped but everytime I go off antibiotics I get more abscesses. So now I'm on Humira and Tindamax (Tinidazole) indefinitely, I was told only about 7% of people get it as bad as I have. Lucky me 😕

Yes, I got a fistula. I can't remember in what order it all happened because I had a lot of surgeries. But before the final j Pouch.. on a afternoon when I had surgery to WAKE UP with no more operations, I woke up without the final j pouch and had issues with the fistula for awhile. I think there was another surgery before I had the final surgery but there was definitely a fistula and it was GROSS. POOP coming out my vagina. OMG. I think of it and cringe. but what can you do?? You gotta survive. You gotta move forward. But it was totally unbelievable and disgusting and went on for a chunk of time of which, gladly, I have forgotten about until you asked. TIME HEALS ALL THANK THE LORD. 

I had to look up fistula. So, I don't think I ever had it. However, I do often have the sensation of needing to go. Many times, I'll hold it for about ten minutes, and the feeling will go away for a couple of hours.

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×