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So the RV fistula is back or it's a different one in the same spot. Had a pouch study done today and I immediately felt it and the doctor showed me the X-rays of the fistula. So I saw my surgeon right after and surgery for another ileostomy is set for Thursday. I have only been using my jpouch since the beginning of May then I had all the distention and now the fistula. I haven't been able to really enjoy my pouch. The only good thing I experienced was not having the bag. Being bag free was awesome. But having a fistula is painful and gross and I'd rather have the bag.

Needless to say I'm bummed. I expected this but it's harder to hear it in person. I plan to keep the bag for at least a few years while I work and go through grad school. This will be my 8th surgery in a year and a half. I need a break. I need to move on with my life. It was a hard decision to make but I don't have much options either.
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I am so sorry for you Cate. I know how rough this has been. Was your surgeon able to explain why the fistula reappeared and did you sense it was appearing before passing stool the way you were?

I think you are doing the right thing in letting your body recover from all the trauma you have been through. Get healthy and finish school and then revisit the surgery. By then, they may even perfect it to a greater degree. At any rate, your body will have time to heal and repair and for you to get healthy and focus on something other than health issues.

If you are ever in need of a second opinion from another surgeon who is top notch I would recommend Dr. Sonoda who is out of New York Presbyterian hospital. The docs in this group see a lot of jpouch patients and handle difficult cases. He does accept insurance.

Best of luck.

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