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Reply to "Pouch failure"

I just want to let you know I am currently in the exact_same_ boat! I too have this pouch causing mysterious problems after 20 years. It worked fine for 18, literally problem free. Then, the  past 2 years I’ve been hospitalized over 20 times with every test under the sun for mysterious bowel obstructions that don’t show up like obstructions on ct scans but present like them in every other way. The final decision just last month (after a really bad admission, 2 week admission) was that they think it is functional (like yours?) and not really fixable. It’s like my pouch is failed and the bowel connecting to it doesn’t move properly anymore, so it is like having a permanent ileus. I’m in Canada and I don’t think pouch re-dos are common here like at the big American Centers unfortunately. I am getting a diverting ileostomy first-I have my surgical consult next week and hopefully surgery before the end of June-as they think if it is a functional/peristalsis type issue this should improve my health greatly pretty quick, and help me make a more confident decision to have the pouch taken out and move to a permanent end ileostomy. It does mean an extra surgery, but I really really really need to know with certainty that I’m out of options or something wasn’t missed before I give up my continence in my 40’s. It is such a hard decision, I totally get it. I’ve been trying to convince myself for a year I can live with chronic pain and sickness and it really isn’t “that bad” but have finally come to face facts after this last hospital admission that this is no way to live and it isn’t temporary, and if an ileostomy will give me my quality of life back, I need to accept it. It’s still hard, but I also can’t live sick and in pain anymore, I just can’t, when there is an option not too.

feel free to message me if you need to, no one other than us pouchers  has any idea what it’s like wrestling with these kinds of questions and situations. This site has been a huge support to me the past 2 years. 

to others on this thread-did any of you have your pouch diverted first without taking the pouch out, like in stages, and if so how long was your recovery?

good luck to you.

 

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