Kelsie, I had a j-pouch for 12 years before developing a RV fistula. Tried several repairs and nothing worked. I was also at that time diagnosed with crohns disease. I did get the k-pouch despite crohns diagnosis because there was no small bowel involvement, just in the j-pouch. I have had my k-pouch just over 7 years now. I don't know if the fistula is gone or not but I had a complete proctectomy (rectum removed) so its a mute point. I have annual scopes of the pouch. So far all my scopes have been neg for inflammation except the last one. I was put on 2 week course of cipro and go back for another scope in Sept. so we'll see. but no symptoms. no urgency, no leaking so thats all good. I am very happy with my k-pouch and very glad I did it. It was the right choice for me. I hope that is helpful.
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katie
Katie, may I ask who did your kpouch?

Have you had any complications?

What did you have done to try to heal the fistula? Who did you go to?

Was the only reason your dx was changed she to the fistula?

How bad was your fistula? Was it painful?

Thank you so much for your response!
Hi Kelsie,
Dr Remzi did my k-pouch. AT the time, Fazio was still the head of the department so he was a little easier to get in to see than now Smiler
But Remzi really is great, I'm very thankful he was my surgeon. I live near cleveland so the clinic was not a hard decision to make.

I have not had any complications with the pouch itself. I have had little rocks in my pouch twice. First time, I actually had obstruction symptoms which is how they found them. the way my pouch is the opening to the small bowel is near the bottom so the little rocks sort of collected there. Dr Shen (who is my GI) could not remove them during a scope so I actually ended up seeing a urologist who specializes in stones and he got them out with a lithotripsy device. I got another stone after than but different from the others and Shen was able to get it out during a scope.
I have no leaks, and no problems intubating.

As far as the fistula goes. He did try some sort of flap repair and then I had the porcine plug. I also did several sessions of Remicade therapy. I also had a temp ileo done during the first repair because the fistula had become so debilitating, liquid stool literally pouring out of me Frowner It didn't start that way, but after months it just got worse and worse. I had to wear a pad all the time. I could never delay going to the bathroom because it would just come out. It was horrible and yes, it was incredibly painful towards the end.

Remzi did all my repairs.

The diagnosis was changed in combination due to the fistula and also my pouch was "full of crohns" according to remzi after he first examined my j-pouch. not likely the fistula was a surgery complication since it was 12 years after my j-pouch was created.

I hope that answers all of your questions! I think you will find there are not a lot of doctors out there who think the k-pouch is so great. Even now when I see GI or colorectal residents and fellows, even ostomy nurses they all seem just a little surprised when I say I love my k-pouch. I don't know why, maybe because of the complication rate. It took a lot of getting used to but I am very glad I did it!

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katie

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