Partial/pseudo-obstruction? Newly Diagnosed need advice

Well, I FINALLY got a diagnosis, mostly. Presumed gastroduodenal Crohn's disease.

Last summer after a year of severe GI symptoms, including a stay in the hospital the previous fall that showed granuloma in the colon along with severe pain and diarrhea with weight loss, I ended up back in the hospital again for 3 weeks with yet more severe diarrhea, weight loss, and scopes that showed gastric ulcers (they weren't currently bleeding but had scabbed over from previously bleeding), extensive villous damage which led the on-call GI to accuse me of cheating on my celiac diet because he hadn't reviewed my bloodwork that showed my antibodies were perfect, proving I wasn't, and mild colitis but no granulomas.

Because I can't come off Hadlima since it's treating my Psoriatic arthritis, and the increased dose (I take it weekly now) has resulted in no more ulcers in the stomach and the villi have regrown, the GI has said he feels he can't 100% confirm Crohn's with only one granuloma because gastroduodenal presentation is so rare. He DOES think it's Crohn's disease, particularly because I have Psoriatic arthritis and I have arthralgia that my Rheumatologist identified as a type that's specific to her Crohn's+PsA patients, and I also get Crohn's type mouth sores. He's ordering a pill cam to try and find any more evidence, and it's checking for neuroendocrine tumors as well. I'm still having flares of diarrhea occasionally which I expected, but the excruciating pain had improved somewhat.

Suddenly I started having extreme pain again, and I don't know what to do about it. Stabbing pain in the rectum, lower right and upper right (I don't have my appendix any more). I feel like I'm having trouble pooping, but when I go it's loose and fluffy to liquid and excruciating. There's slight relief for a bit when I'm able to go. Obviously it's not a full obstruction. All this is complicated by the fact I have endometriosis I'm waiting on a hysterectomy for, I regularly suffer from large ovarian cysts, and I've had two ovarian torsions, as well as multiple abdominal surgeries that could cause scarring. The idea of going and sitting in the ER for 8+ hours to be told this is nothing is a total nightmare, and I have T3s at home for my significant arthritis. But my GI didn't give me any information about what I should do about Crohn's complications and I have no idea what's emergent or not.

Posted Apr 8, 2025, 9:07 PM UTC

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