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J-pouch Removal?
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
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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 🤞!
Barbara, thanks! I'm sorry about what you had to go through.
I'm going through something with my pouch what kinda symptoms did you have and did it really help to get it removed
@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.
Hi Dave, I am sorry you are going through all of this. I wish you luck with the kidney. I am 67 with UC and have never been in clinical remission. I am possibly a candidate for the bag, as low grade dysplasia was found and possibly invisible dysplasia in the rectum. I honestly dont know if I could handle a bag. How did you adjust and how long did it take you? Did you have to curtail any activities? thank you Bill
@wjn Hi Bill! Having an ileostomy is an adjustment, but for those of us with IBD, *not* having a diseased colon can be a welcome relief.
Most people find they can handle having an ostomy okay. Time to recovery really depends on what your health was when you had the surgery.
I know people who golf with an ostomy (I don't golf). Personally, I scuba dive, swim, travel, lift weights, do yoga. If you're able to do an activity now with UC that's not in remission, I'm pretty sure you'll still be able to do it after the ostomy.
What activities do you have concerns with?
@wjn Dave, I had a Ileostomy 3 months ago while they figure out why a surgery removing a portion of the j pouch at the cuff and reconnect it caused it to close as it healed. Anyway, having a Bag does have a impact on your life But I can tell you though time it gets easier and at first it was awful but now finding the right appliance and learning how your system works If I had to keep it I would be fine I'm able to do anything I could do before the Bag.