@lisalucier Yes. I’ve had cc for over 35 years now. When it first struck (literally), I was a young mom, in my 30’s. Our son was about 5 or 6. The GI I saw was, and still remains, the very best GI I have ever seen, and I’ve seen a lot. (Why do GI’s hate women?). He was very thorough and even looked for other causes as well, like Lyme disease, etc. He said, to the best of his knowledge, I had some type of colitis, but not ulcerative. Definitely not IBS. He performed a colonoscopy and couldn’t find anything wrong. His suggestion was that it might be autoimmune. Fast forward over the years and every single GI I saw refused to believe I had colitis. Every colonoscopy came out perfectly healthy. Every diagnosis was “allergic to food” (I am lactose intolerant, but always have been and know to stay away from anything containing lactose) “IBS”, “you are acting like a hysterical female”, etc. The last GI I saw decided to biopsy several different sections of my colon while dong my colonoscopy. It came back showing I have collagenous colitis, most likely for years and years. I recently found out that it wasn’t until the late 80’s that scientists began researching different types of colitis. Before that the premise was that ulcerative colitis was the IBD in the lower bowel.
Mine has different triggers, and these can even change over time. At first for me, stress was the main trigger, and every summer if when it would come out of remission. Heat stress is the worst stress you can put on your body and I was car pooling around little dudes to their soccer games, tennis, swimming, etc.
My last GI wanted me to take Budesonide, but my pharmacist called me at home to discuss the many reasons why I should not take it. Women over 55 should not take it. Women with osteoarthritis and/or osteoporosis should not take it. Women with Hasimotos thyroiditis should not take it. All of the above are autoimmune disorders, and if you have any others, don’t take steroids! Also, there is a 50% chance of it working on mc and it normally takes 2 weeks before it kicks in. My flare ups last about 2 weeks, then they go back into remission.

So, when it does flare up (and there are so many things that can trigger a flare up, not just in me but everyone), I simply have to ride it out. It’s similar to the effects of the stuff you drink before a colonoscopy for me, but 24/7 for 2 weeks or more. I just drink a lot of Pedialyte, eat green bananas (that’s what I seem to tolerate this year, it’ll change), and I will absolutely lose 20-30 pounds in 2-3 weeks. It’s a horrible way to live.