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HI friends on this long journey!

I have had a diverted Jpouch for 7yrs now. For the last 3-4 years I have been having long bouts of chronic abdominal (left sided) pain (burning kind of pain, continuous), and low back pain. In the recent couple of years I have flare ups of joint pain in the major joins (knee, hips mainly, often one sided) that seems to accompany this pelvic pain. 

I have been bouncing between rheumatologists, gynos, and bowel surgeon with no clear answers. But reading so many posts on this forum, and some medical papers (small case studies), it seems like it must be related to my pouch and what must be proctitis or cuffitis. Currently flaring at the moment, seeing surgeon on Monday, and had bone scan today for arthritis. The joint pain is quite bad, and limiting my movement, and sleep. 

Q1 - My Rheumy will want to put me on prednisone and methotrexate, but is that the best approach if this is related to cuffitis? I don't really want to be on long term methotrexate. 

Q2 - Have others had their joint pain go away with removal of rectal cuff? Total closure? 

Q3 - has anyone had success with fecal transplant for cuffitis? 

Q4 - any other suggestions for getting in top of cuffitis? 

Look forward to any insights you may have, 

Tags: joint, arthritis, cuffitis, proctitis

Replies sorted oldest to newest

Prednisone and MTX seems reasonable, but the prednisone should only be short term. Also, I agree that sulfasalazine is the more typical first step, unless you are allergic to sulfa. 

For my enteropathic arthritis, my rheumy started me on biologics before an immune modulator. It was not until I developed chronic pouchitis that Imuran (azathioprine) was added.

Jan

Jan Dollar

HI Marie, yes that's the unknown - i've read and heard  of cases where the arthritis resolves with pouch excision, and some where it doesn't - so its a bit of a gamble. There are many different forms of arthritis so that's part of the puzzle - confidently resolving which form it is. My rheumy just lumps it in the inflammatory / spondyloarthritis group. My feeling is its linked to bowel related flares. 

Saff

Well, here's the thing: 

If you have a spondyloarthropathy, it follows its own flare and remission pattern, often independant of the gut flares. This is why it can precede the onset of IBD by years or decades, or manifest long after colectomy. The peripheral arthritis of IBD tends to coincide with IBD flares.

And yes, you can have both types of IBD related arthritis, and osteo arthritis too. This just makes it pretty near impossible to completely sort out. So, you just go with what your doc thinks makes the most sense. Nobody ever suggested to me to have a pouch removal for this. But, then again, my j-pouch is not diverted.

Jan

Jan Dollar

Been battling the enteropathic arthritis for a couple of years. Both GI and Rheum MDs felt if I could get the chronic pouchitis/GI symptoms under control that the joint pain would improve. Between the two of them I'm currently taking Hyocasamine, endocort and Imuran. Took a lot of adjusting of meds to get off the prednisone and hoping to stay off. Am still on rotating antibiotics. Do have a sulfa allergy so that takes some things off the list of options. Next step is biologics if this doesn't work. Good luck in finding the right combo that will work for you

M

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