Hi there, sorry to hear you are dealing with this. I also have a fistula.  I have a diverted pouch. My doctor is suggesting that the presence of a fistula suggests crohns. I'm not sure what others think about that. My surgeon has suggested we could try a pouch advancement, as an alternative to full pouch removal. I have to say I am leaning toward pouch removal. We all have different issues and quality of life tolerance thresholds.  So its difficult to compare. If you are not at all considering pouch removal, then advancement could be a reasonable option. That's difficult to be advised of nerve damage of that nature - I cant help you there I am sorry - I hope others here can. Its concerning though. 

Who, this sounds like what my son is dealing with, for the second time.  The inflammation is so high in your body.  I am not sure where you are from but something that was done for my son was a biological plug.  It is not a common procedure but in our case, it worked for the first leak.  My son has exactly what you are describing.  An abscess, no visible fistula, but trust me, it’s there.  We are on round two.  They drained the abscess a few weeks ago and he will have a pouchoscopy shortly.  If the fistula is there, they are planning on the biological plug.  It is a custom made device that is inserted by interventional radiology.  It then gets absorbed by the body and seals up the leak.   We are treated at Weill Cornell in NYC.   Two years ago, my son was only the 13th patient at their center to have this procedure.  If you want additional information PM me and I will be happy to give you further details.  

Hey! I don't know if you are still reading this forum but you sound a lot like me! I was diagnosed with UC at 13 and rapidly got really sick and ended up with a 3 step j-pouch within a year. I also developed a fistula about 10 years later. It didn't bother me a lot but I did try glue and the the biologic plug. Neither of those worked and I've been living with it for about 10 years. I got a seton 2 years ago because I was having more pain than before but it recently started causing a lot of problems for me. I've been on and off antibiotics for 6 months because it gets inflamed and "blocks" my pouch. Two weeks ago it managed to abscess despite the seton and I spent 3 days in the hospital on IV antibiotics after having it surgically drained and a stricture dilated. Now I am feeling like crap again and seriously considering a more drastic intervention. It makes me sad because up until the last 3 years (after the birth of my daughter), my pouch was pretty great despite the fistula. I had ONE case of pouchitis and was pretty happy with life. I am very afraid of losing my pouch and ended up with a permanent ileostomy because I had a horrible experience with both of mine (I had them for a year) and I feel like it is a serious handicap to living an active life with nice clothes, swimsuits, and travel (I am a woman so swimsuits fit tight and low as do most clothes). I am considering remicade but it scares the crap out me since I had friends who had terrible reactions to it and I studied immunology and know the very serious risks of infection and cancer.... FUCK FISTULAS!

I would definitely try Remicade before going to ostomy.! I would basically do most anything to avoid that, for the reasons you said as well as my concern about skin deterioration/ infection with osteomy. That said, I was on Remicade before my jpouch for over 4 years and it was extremely effective, until it suddenly wasn’t. I did experience multiple skin cancers though doctors have suggested that Imuran and other drugs I was on also may have contributed to skin cancers. I’d deal with those anyway to have UC in remission for few years! Just me! Good luck! 

Laurie

Thanks Laurie! I don't know if the protocol is different for fistula treatment vs UC remission but did you have problems with infections while you were on Remicade? That was one of my doctors' concerns since I have a daughter who is at the age where she gets sick a lot (but its getting better) and I also work in a research lab with bacteria, yeast, and viruses (although not with human infectious agents for now). 

If your attempts to correct the problems you are having with your J pouch are not successful and you decide to have it removed, you may want to consider getting a K pouch or BCIR.  These similar procedures involve creation of an internal pouch with a button hole size stoma located below the belt line.  The pouch is emptied at your convenience 4-5 times a day with a small catheter and the stoma is covered with a small absorbent dressing.  With these procedures, you can wear the tightest clothing, eat almost anything you want, participate in active and strenuous activities, and experience intimacy with no embarrassing problems. Significant medical problems made removal of my j pouch necessary and I chose to get a BCIR. I very strongly did not want the bag with its associated issues. I now lead a normal life and have had no problems with my pouch.  Both of these procedures have a high success rate and high user satisfaction.  Please feel free to send me a PM if you have any questions.

Bill

LC,

I was concerned with infections and became bit of germaphobe- tried to avoid sick people, vigilant hand washing, vitamin C. That said I taught kindergarten special needs and First grade during that entire time. Only one bad bronchitis episode and that was because 16/30 of my students were sick for weeks, then me. I do believe being with kids help boost immunity so if you’ve been around your daughter and other kids that’s an advantage. 

Also, I had spleen removed in 2007 so feel my immune system is already compromised and I get flu shot in September and think you would need pneumococcal vaccine also before starting it.

I've had lots of issues but thankfully no fistula, so not sure how Remicade specifically would help that. Again, good luck!

thanks bill for reminder of other option, when that point comes.

laurie