Hey folks,
Just wondering does anyone else have their pouch disconnected for several years ? I'm coming up to 7 years now. I have a lot of pelvic pain which may be from my pouch... mostly on the left side... its hard to be confident what it is.. the last bout has been constant for three months, but its been ongoing on and off for almost 4 years. Finding it hard to face that surgery for some reason. Too many under the belt already.
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I'd go for it. The pouch isn't doing anything inside except causing you pain!
Have you consulted with a surgeon yet about removal?
Hi Saff, I don't have a disconnected jpouch but a removed one. The best case scenario would be to calm yours down. If it comes to removal, feel free to pm me. I know the thought of another surgery can be overwhelming, but being pain free might be worth one LAST one.
Mine was removed 6 months after it was diverted and the pathology report said it still had chronic pouchitis. I think you might have something like this going on. Can they do a pouch scope to see? Maybe you can treat the pouchitis or whatever is wrong without having it removed.
I am glad I had it was removed as it was still causing me pain even though I had a perm ileo.
Hey all thanks for your replies, yes I am seeing my surgeon next week - will check up on my pouch and review the options. I also have inflammatory arthritis which think is related to the pouch issues. Any tips on how to calm it..?
Please let us know how your appt. goes.
Hey friends, so I've seen two specialists since we spoke - bowel surgeon suggests we could try 'pouch advancement' (to remove rectal cuff..) possible cause of problem. I do have some blood stained discharge from pouch. He didn't think it was worth doing a scope as the management options would remain the same - he doesn't think that any of the available treatment for diversion colitis/ cuffitis are currently effective. So removal of cuff (trial 1) is his favoured option. If that doesn't help then pouch removal is next step.
Rheumatologist wants me to postpone surgery, and try humira and methotrexate to see if that will treat both pouch inflammation and arthritis which appears to be associated. I'm not keen on either option (!), but am going with medication for now. Using some short term prednisone for arthritis relief, as methotrexate takes a while to work.
A j-pouch scope is a simple procedure so I am wondering why your doctor thinks it isn't necessary. There could be other things wrong besides cuffitis. It might save you from having 2 surgeries instead of just 1.
Your rheumy has a good point about seeing if these treatments clear all up.
