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Ahhh, what a feeling.
I wanted to share my experience in case it helps someone else, and also to see if anyone has had a similar journey.
I had GI symptoms for about 4 years before getting diagnosed, and then it took another 2 years before my doctors felt comfortable calling it IBD/Crohn's. Even today, my GI says my case is somewhat atypical and isn't 100% straightforward.
From day one, my main symptom was persistent YELLOW stool. The loose stools came later, but the yellow color was there from the beginning. I've never been a classic Crohn's patient. I've only had visible blood once, I've never consistently had an elevated CRP, and my biopsies have never definitively confirmed Crohn's.
My first colonoscopy found significant inflammation in the terminal ileum. I was started on budesonide and later Stelara, but neither seemed to help much symptomatically. While on Stelara, I ended up in the ER with abdominal pain and bleeding. Some doctors thought I had an intussusception, others weren't convinced. Either way, the bleeding resolved quickly.
I was put on prednisone, and for the first time in years my symptoms completely disappeared. A few months later I had another scope that showed no longer having inflammation in the terminal ileum, although there was some inflammation noted in the colon.
About a year ago I switched to Skyrizi. Around the same time I was also taking cholestyramine. My symptoms improved maybe 40%, but I still had the same pattern I'd always had: yellow stools, loose stools, and multiple BMs per day.
At one point I stopped the cholestyramine because I thought I was doing better. The yellow loose stools gradually came back. Recently I restarted cholestyramine twice daily and paid more attention to mixing and taking it consistently.
The result has honestly shocked me.
For the first time since this all started, my stools are dark brown, fully formed, and predictable. I've been eating foods that used to worry me-beans, kale, bell peppers, mango, and other high-fiber foods-with no issues.
I've had fecal calprotectin results in the 400s, 500s, 600s, and once as high as 1200, so I'm not claiming this was "just bile acids" all along. I clearly had objective inflammation at various points. But the fact that cholestyramine has had such a dramatic effect on symptoms that I've had since day one makes me wonder how much bile acid malabsorption or bile acid diarrhea has contributed to my case.
Has anyone else had a similar experience where cholestyramine ended up being the missing piece? Or had persistent yellow stools that turned out to be bile-related?
Either way, after six years of chasing answers, having normal stools again feels pretty incredible.
Interesting new Crohn’s research suggesting IBD may be less about the immune system “randomly attacking the gut”