@ndough I'm sorry to hear that. I was placed on budesonide right away (over 10 years ago). It worked (stopping nighttime issues). Unfortunately, once I stopped it, it started up again worse. I would switch GI physicians. I switched GI MD's about 2 years ago; he has done more tests than anyone thought. His last one had me on it for 6 months and then did a biopsy, which proved it was still active. Based on that, it's called budesonide-resistant collagenous colitis. Now we are working on getting approval for Entyvio. I asked if I could just deal with it and watch my potassium. He basically told me, "No way in hell will I let you do that." My understanding is that doing this increases my risk of small bowel lymphoma. Do you live near Chicago? If so, my GI is in New Lenox. He studied under the top IBD physician at University of Chicago IBD/Celiac center