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,