or... does anyone know of someone who has "lost" their pouch because of a fistula?

I'm about to have a seton put in to hopefully resolve a fistula. My surgeon is skilled, but ridiculously abrupt with her comments. She has mentioned the possibility of losing the pouch because of the fistula. I'm trying to get an idea of how significant a risk this actually is.

(I very much do not want to go back to an ileostomy.)

Thanks for your comments.

Do you have fistulizing Crohns? If a fistula is manageable for you and isn't causing infections and abcesses then they usually leave it up to the patient whether or not they want to treat it or have a pouch removed to prevent them in the future. I have fistulizing crohns but am considering having my pouch removed after my pregnancy because I think an ileostomy will be easier to manage than bum pain and leaking all the time. Most surgeons are not optimistic about repairing fistulas surgically. Have you tried Humaira or Remicade?

I think if the fistulas don't heal they prefer to remove the pouch as but I think the final decision is up to the patient (i'm holding onto my pouch for as long as possible eventhough it's not longer in use).
If its UC then the setons should help drain the fistula and then allow it to heal. I have couple of fistulas which they think is due to fistulizing crohns as they didnt heal with diverting loop ileostomy and the setons in place, have now had infusions with remicade and taking 6mp which seems to have helped however I don't think my doctors are keen to try another takedown ever again but i live in hope.

Hope the seton works for you

I lost my pouch due to a pouch/abdominal fistula. After healing for a year I underwent surgery for a second pouch. I ended up with a K-pouch.

I just recently (May) lost my j-pouch because of a recto-vaginal fistula. I had two surgical repair attempts and also tried medical therapy (including remicade). In the end I could not stand to live with the constant draining anymore and opted to get a kock pouch.

While its very discouraging when a surgeon is so abrupt (my surgeon was the same) it is helpful to have a fair warning of the possible outcome. My surgeon said he really didn't think any repairs would work but he would try he best if I wanted to give it a shot. Like I said in the beginning I had two fistula repair attempts then agreed with my surgeon it was time to stop trying (many people have 3+ repair attempts).

I think the final decision to remove the pouch is something you really have to be 100% sure about or you'll have regrets. Me, I know that it was the right thing to do and I love my new kock pouch!

Best of luck

--
katie

Thanks for the responses everyone. I truly appreciate you sharing your experiences.

To answer the question: I don't know if I have Crohn's or just had UC and have a fistula. The fistula originates at the anastomosis site. I've had pain in the region since my original surgery. Although I'm not certain, it is my belief that the site never healed completely and that a slight fistula has always been present. I don't know that as a fact, but it seems possible. If the fistula were to perpetuate in its current embodiment, I think that I would prefer to tolerate it for the rest of my life rather than have my pouch removed. Never know if things change, but I really disliked the ileostomy.

Thanks again. Please don't hesitate to fire back any more comments/suggestions.