J-pouch Removal?

Posted by davem @davem, Sep 6, 2024

Hi all, with a diagnosis of aggressive ulcerative colitis, I had a colectomy and an ileoanal anastomosis surgery (j-pouch) in 1983. Over the years I would be hospitalized every so often due to blockages, typically from eating the wrong food - steer clear of water chestnuts! Thirty-five years later, the J-pouch failed.

In an earlier post, someone mentioned a change in her diagnosis from UC to Crohn's. That happened to me too. Had the earlier disease been diagnosed as Crohn's, they probably wouldn't have done the initial procedure. During my first visit to Mayo Rochester, my GI doctor said she didn't think I had Crohn's. So, whatever...

The pouch failure became an emergency. My surgeon - not at Mayo - detached the j-pouch and created an ileostomy. At one of my post-surgery meetings with him, he casually mentioned that I would probably want to have the abandoned j-pouch removed.

I have had the ileostomy for 6 years now. (I'm willing to discuss that with anyone with questions.) My question is, Has anyone received the same advice or gone ahead and had their J-pouch removed?

I am being evaluated as a candidate for a kidney transplant in November, and I don't want that non-functioning organ taking up precious space that might be needed for the new kidney - or as an excuse for "difficult anatomy."

Thanks for "listening." - Dave

Interested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.

Sorry for all your surgeries, Dave. Good luck with your future kidney transplant!! I've only had an ileostomy for 14 months while my resections healed after my colorectal surgery (plus 3 resections for complications with my small intestine). My life seems not as bad after reading your story. Again, GOOD 🤞!

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Profile picture for Barbara Sweet @tbrksweetyahoocom

Sorry for all your surgeries, Dave. Good luck with your future kidney transplant!! I've only had an ileostomy for 14 months while my resections healed after my colorectal surgery (plus 3 resections for complications with my small intestine). My life seems not as bad after reading your story. Again, GOOD 🤞!

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Barbara, thanks! I'm sorry about what you had to go through.

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I'm going through something with my pouch what kinda symptoms did you have and did it really help to get it removed

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Profile picture for jonnypouchw @jonnypouchw

I'm going through something with my pouch what kinda symptoms did you have and did it really help to get it removed

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@jonnypouchw

My j-pouch pouch was removed in 2002. Until then I had chronic pouchitis, anal abscesses, anal fissures, leakages and urgency. I had to wear pads because of the leakage. It got to the point where I couldn't go for hikes, swim, or other normal activity.

Since the removal and permanent ileostomy I've been able to resume a normal life. My diagnosis was changed from UC to CD in 2015 when I was found to have disease in the small intestine. I've been on Humira since then and haven't had any flare ups.

I think if the j-pouch hasn't been removed I would still have disease in it; even though it was red hooked up.

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