Background: UC with ileal ulcers, PSC with stent, banded esophageal varices, portal hypertensive gastritis (mild?), iron deficiency anemia, MELD 9 (three weeks ago), slight fever, normal BP and pulse
Been having two weeks of bad cramping central/right abdominal pain. Food seems to make it worse. Had a urgently low hemoglobin (5.2) this week, got two units of blood Thursday. Not sure but maybe melana Friday night— definitely dark but not jet black, not tarry or particularly foul either. I’ve had similar before which self resolved, but mystery never solved.
If I had to guess (which I feel like I have to), hemobilia? Or slow stomach bleed? Some kind of small bowel bleed? Or no bleed at all? I’ve got numerous doctors visits coming up, but I think the ER is looking more likely tomorrow
Sounds like the ulcers are causing you the most issues with your bloodwork. Doctor got me on Rinvoq for my UC about 2 years ago. Game changer. UC is in remission. The pain sounds like gall stone that’s stuck. MRI or ultrasound should be able to confirm. They also recommended I eat as much protein as possible. Are you on cevedilol 6.25MG? Doctor just started me on that to keep/reduce pressure in my liver.
Thank you, sounds like we’ve got some similar meds - carvedilol 3.125 bid and Rinvoq 45mg. Hemoglobin dropped again, 4.5, so the doc insisted I go to the ER today. Gonna get some scoping and imaging. Rectal exam showed blood - probably been the case for a while, but I guess my eyes aren’t sharp enough to see it after a BM. In any event I’ll post an update once I know more
With UC in 2006, I luckily did not have much bleeding. But later with PSC, there were quite a few. I do not know the connection as I have had a pouch since 2006.
The way I looked at it, if the blood was bright red, that meant pouch. If it was darker, that meant PSC.
Sorry for the delay, long story short, very large ulcer in the ileum. Was an 8 day hospital stay, ultrasound, CT scan (transient intussusception in small bowel), ERCP (stent exchange), EGD (3 esophageal bands), paracentesis (4L), and colonoscopy — looks like my ulcerative colitis has morphed into Crohns or mixed IBD.
Docs decided against capsule endoscopy since the ileal ulcer was the likely cause.
A few instances of black BMs a week after I went home, but resolved and monitoring hemoglobin fairly closely.
Currently, tapering down from 40mg prednisone. Staying on Rinvoq. GI is trying to add tremfya.
Ascites returned quickly after paracentesis. After discharge, hepatologist started me on 20mg furosemide and 50mg spirinolactone, and now ascites is gone (and about 25 lbs).
Been having LCV (leukocytoclastic vasculitis) which is the first recurrence for summer 2023. Very slight chance of Henoch Schonlein Purpura (HSP) but not too concerning at the moment, as prednisone would be the logical treatment anyway. There’s a Dr. House episode involving HSP, btw.
Fun times, but honestly, docs and staff took great care of me, my pain is all gone, and I’m much better than when I went in, so I’ll chalk it up as a win.
