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Hi everyone,

I'm brand new to this site although I've been dealing with j-pouch surgeries and complications since 2009. I've finally decided I need some support from people who might have experienced what I claim is a severe ileo prolapse. It started out of the blue about 3 months ago while I have been waiting an indefinite amount of time for my fourth take down. I have a loop ileo and each end hangs out about 6-8 inches while I'm up and not laying flat. For me this has made things very difficult in terms of having to empty my bag 2-3 times more often as well as maintaining the integrity of my skin around the very large bowel protruding. I was relieved early on to find a video on YouTube of a man with a very similar situation demonstrating the reduction process and pouching procedures.

My question is whether I am the only person who finds this situation quite unbearable or are others also struggling with this and have helpful advice? My doctors are all quite unfazed by the severity of this issue, claiming there is absolutely no danger or issue. I suppose my breaking point was two days ago when I spent the night in the emergency in the most pain I've been in with my prolapse so swollen it wouldn't reduce. Please help with any experiences you may have with this...it's driving me crazy!

Cheers

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Hi Ikh,

I have been waiting for a j-pouch revision. In Toronto we have some of the best people to do the surgery but unfortunately they are very busy and pinning down a date is very difficult. Last time I was supposed to wait just a few months and I only had my surgery 2 years later. As for ileo revision my surgeon says he wants to do the j-pouch revision sometime so it doesn't make sense to have another surgery. Also it seems the con ensues that it's not all that serious...although I'm not so convinced.

Cheers
P
I can't be sure of the timing from your posts, but perhaps that ER visit would change their idea of how benign this is. It makes sense that they'd rather proceed to takedown than tinker with the loop ileo. If you let them know that you're running into serious trouble, maybe that would move you to the front of the line. Just a thought.
Scott F

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