Do extra intestinal manifestion's go away with jpouch removal?
yes - 0.0% - 0 votes
no - 0.0% - 0 votes
not sure - 100.0% - 1 votes
Posted 10/12/2018 2:32 PM (GMT -6)
I'm one of the lucky ones who underwent the 3 stage surgery for the jpouch. It's been 2 years after take down and my life has been miserable. I have the typical ankle, leg, knees and pain in my right flank on my back also chronic pouchites. I go to the bathroom 15 to 20 times a day. I've tried all diets, SCD, and low fod map and nothing works. My GI has run out of options for me and I'm considering removal of the pouch and going to a permanent bag. My question is will this remove the extra intestinal ma
Posted 10/14/2018 9:57 AM (GMT -6)
Are you taking medication for the pouchitis? I think at this point, medication to get you into remission might be the only thing that would make the symptoms go away since they are in-line with a flare up. We have one member who is on Stelara for pouchitis, and it helps him a ton. He also likes pepto, but took a lot of anitbiotics to manage the pouchitis before accepting that a biologic was necessary. He managed well on antibiotics for a few years I believe. Have you tried antibiotics? We have another member who got a pouch and was diagnosed with lupus afterwards, and she now has to treat the lupus or she has a lot of joint pain. For me, I haven't dealt with those issues, but my fatigue hasn't improved. I am still tired and worn down, even without colon inflammation.
Posted 10/14/2018 10:20 AM (GMT -6)
Thanks for your reply! I've been on flagyl, cipro and now Xifaxan. Also on Stelara since January of 2018. Starting doing hydrocortisone enemas and still on 10mg if prednisone. Everytime I get to 5 mg of prednisone everything gets worse and they up the dosage again. I taper down 1 mg a month, so it's a very long time to 5. The GI Dr says the stelara is helping with the ulcerations in the small intestine but I continue to get pouchitis. I've only had to get dilated once in two years. The pouch appears to be functioning correctly mechanically but the diarrhea, aches and constant fatigue is doing a number on my quality of life
Posted 10/15/2018 9:39 AM (GMT -6)
Have you had a consultation with Dr Shun at the Cleveland Clinic? He is the go-to doctor for tough pouchitis cases.
I found Augmentin to be the best antibiotic for my pouchitis. Sometimes I would take it with Cipro.
Dr. Shun recommends the keto diet for pouchitis cases.
The other thing that people do is go back to a loop for a few months while the biological works and clears up their pouch (giving it a break from working). And then reattacking later. The pouch removal is a much larger surgery.
Posted 10/17/2018 10:42 AM (GMT -6)
To answer your poll question -- I personally don't know. You may want to try jpouch.org; the folks over there might have some more experience with pouch removals.