j pouch failed

Joe S.Member

I guess this is me venting on here haha. Well I had my j pouch since 2008 and with 7 years of only pouchitis problems my j pouch developed 3 fistula surrounding my sacrum and bladder causing back pain and bladder issues. After going on remicade and it not working im having an end ileostomy done in december. Im bummed it had to go this way but hopefully i live a better pain free life with an ileostomy. Did anyone else have to lose their pouch due to fistulas?

10/13/144:53 PM

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LambiepieMember

No fistulas for me Joe but, after four years of trying to figure out my j-pouch, I'm going to a permanent end ileo in January. I can no longer take the pain, the gas, the cuffitis, the pouchitis, the soiling, the uncertainty and missing out on my life. Good luck to you and here's to a pain-free new year!

10/13/145:01 PM

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Joe S.Member

Thanks. Good luck to you too. Hopefully we both see an end to our problems

10/13/146:00 PM

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JillMMember

No fistulas, but chose a perm ileo after 3 1/2 years of chronic pouchitis. Originally did disconnect and still had issues so pouch came out 18 months later.

That was 11 years ago - perfectly healthy ever since. No GI issues, except a near total blockage during pregnancy (something to hold over my son's head when he is a teen). Have had two babies since pouch removal - they are now 8 1/2 and 6 years old.

Life with an ileo is blissfully boring and ordinary. I do everything I want, eat everything I want and take no meds.

I hope for the same results for each of you! Feel free to ask questions if you have any!

Jill pouch free since April 17, 2003

10/13/147:54 PM

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LambiepieMember

Hey Joe, I sent you a PM a day or two ago....

10/14/1412:11 PM

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