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Anyone had a J-pouch revision after it was out of place?

Posted by christinehudon5 @christinehudon5, Mar 21 8:01pm

My J Pouch is laying horizontal which causes tie ups, which I have been having for years. My original surgeon never saw a problem on my pouchoscopy. He did untwist my pouch (small intestine wrapped around pouch) in 2023 however went back to problems within months. Finally New GI saw twist on pouchoscopy in Oct 2025. Decided it was time for Mayo Clinic. Been impressed so far, just trying to connect with anyone who has had a revision.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31 4:38pm

@christinehudon5, just checking in. You are in good hands at Mayo Clinic. Did they also recommend a J-pouch revision? How are you doing?

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christinehudon5 | @christinehudon5 | Mar 31 7:27pm
In reply to @colleenyoung "@christinehudon5, just checking in. You are in good hands at Mayo Clinic. Did they also recommend..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@christinehudon5, just checking in. You are in good hands at Mayo Clinic. Did they also recommend a J-pouch revision? How are you doing?

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@colleenyoung , they have suggested either a revision or a permanent ileostomy. Not comfortable with surgeon on Video meeting, have reached out to Mayo and ask for thoughts on a different surgeon.
So of course I am frustrated as well as not feeling well. It will get resolved, just interested in hearing from others who have had these troubles,
Thanks for checking

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Mentor
Susan F, Volunteer Mentor | @susanf8 | Mar 31 8:56pm
In reply to @christinehudon5 "@colleenyoung , they have suggested either a revision or a permanent ileostomy. Not comfortable with surgeon..." + (show)
Profile picture for christinehudon5 @christinehudon5

@colleenyoung , they have suggested either a revision or a permanent ileostomy. Not comfortable with surgeon on Video meeting, have reached out to Mayo and ask for thoughts on a different surgeon.
So of course I am frustrated as well as not feeling well. It will get resolved, just interested in hearing from others who have had these troubles,
Thanks for checking

Jump to this post

@christinehudon5
FWIW I had my j-pouch removed in 2002 and have had a permanent ileostomy since. I would have rather had a functioning j-pouch, but it wasn't in the cards for me. Are there any questions you have that I can help with?

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