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Ulcerative Colitis total Colectomy with Ileal J pouch

Ostomy & J-Pouch | Last Active: Jun 18 7:21pm | Replies (19)
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@fckaiser Thanks for that. When I had the initial surgery I of course had the bag temporarily for 3 months before they did the reverse procedure to hook up my jpouch and during that 3 month period I had huge problems with the stomach/bad and couldn’t wait to get the jpouch connected. So I am terrified of the idea of reversing the jpouch. If mine fails I will not be able to survive anymore. And I’m ok about that seeing that I am 71 years old and have lived a great life and lucky that I could do so. My wife understands this also.

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Replies to "@fckaiser Thanks for that. When I had the initial surgery I of course had the bag..."
Susan F, Volunteer Mentor | @susanf8 | Mar 23 2:36pm

@jvh1 I had a temporary stoma that was fine, and then some complications, so I had a second temporary stoma that was a nightmare. It retracted into my body, I had leaks twice a day... It was horrible.

The permanent stoma I have now is *nothing* like the temporary one. It's well formed and I don't have issues.

I totally get where you are coming from on not wanted to get another stoma, just want to give you that food for thought.

It does sound like you could be having some pouchitis again . Have you seen a GI for it?

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fckaiser | @fckaiser | Mar 23 7:46pm

Sorry that the stoma and bag did not work out for you. I am 78 and have had mine for 8 years without much problem. Can you consult a surgeon and see what might have gone wrong before? It should not be giving you that much of a problem. God Bless.

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Colleen Young, Connect Director | @colleenyoung | Apr 11 12:42pm

@jvh1, checking in. How are you doing? Any updates on next steps?

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lhstephenson | @lhstephenson | Jun 18 7:21pm

@jvh1 I hear you and totally agree. I had my colectomy/j pouch done in 1983, and the 3 months of a colostomy about did me in. My skin around the stoma was like raw hamburger meat! I was so glad to get everything “hooked back up “. After 43 years, I’ve developed a fistula and it’s horrid. My only option may be an ileostomy. Searching for alternative treatment.

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