Update and wondering thoughts before my next appointment:
Blood work shows folate and B12 in low normal range. CRP elevated. Prometheus result: pattern not consistent with IBD. Small bowel series indicates chronic pouchitis, less inflammation than last year and no inflammation just above the pouch this year (had some last year). Endoscopy showed a crohns like cobblestone patch with ulcer. Biopsy showed no granuloma or abnormal cells.
Original diagnosis of UC 32 years ago. J pouch for 27 years. Treated a few times for pouchitis.
With this possible crohns scare two months ago, I went hard core on bowel rest, followed by all organic and Whole Foods, alternative supplements, lots of water, no caffeine/alcohol/sugar/carbs and switched to some alternative foods to get rid of possible triggers. I’ve just added in B12 and folate by supplement and veggies; I had completely excluded this from my diet so I’m not inclined to think it’s an absorption issue.
I feel so much better physically. The symptoms I could “feel” before dietary changes felt like pouchitis. I don’t feel symptoms now. The fatigue is lifting and I think will continue to improve when I get back to exercise and the B12 and folate build up.
Sooooo, I’m wondering thoughts before this appointment as I think about questions to ask.
My thought is to continue my current course and ask to repeat tests in 6 months or so.
I’m also aware of the issues with the promethius test and find the results curious.....though I’m grateful for the overall picture.