I have been diagnosed with collagenous colitis for over a decade. Among other GI concerns I have, this one seems to cause the most reoccurring problems. With the help of Mayo dietician's, I have had help with the FODMAP diet, I am slowly reintegrating some FODMAP triggers. Fiber really sets the colitis off, but am able to tolerate small amounts now. I am not lactose intolerant tolerant but have a glucose malabsorption. For years a GI doc elsewhere didn’t check the breath tests, so I just assumed I had a problem with lactose and all along it was mainly fructose. That’s where the fodmap diet and the Monash app has helped. I can have aged cheese and small amounts of good probiotic dairy like kefir or Greek yogurt, but avoid milk and soft cheeses.
Spoonful is an app that can scan groceries and help as well. A referral from Mayo GI to a pelvic floor physical therapist who did visceral therapy was really helpful. She also recognized early on that my gallbladder didn’t seem to empty well and she was right! Scans soon revealed I needed my gallbladder removed. Her suggestion of effleurage during painful bouts and using a tens unit has been wonderful. I used to need a heating pad constantly, not so much anymore.
I too had reactions to budesonide and it seemed to make things worse. My GI doc had me do a 6 week Pepto trial. That seems to help and I also understand that multiple daily doses of loperamide can help. ( I can’t take a lot of that either).
I am using Fodzyme enzymes ( expensive, but a life saver) for dining out or those foods I’d like to have once in awhile). Stress causes flares.
I have accepted the fact that sometimes there is no rhyme nor reason as to what caused a flare and that it may be some of my other GI maladies. Treatment has seemed like hit and miss. But with the knowledge about food, what meds don’t work etc, I seem to be on a decent maintenance phase with less pain. Hope this helps. Good luck!