Hoping For Remission
Last updated: May 2023
I've been prone to watery diarrhea most of my life, but it started becoming a real problem in 2013 when I lost about 30 lbs. without even trying. After spending Christmas day on the toilet I decided that whatever was going on wasn't going to disappear on its own. I was lucky to have a good primary care doctor who sent me to a gastroenterologist because she thought I might have celiac disease. The GI doc had his own bias and made me give a stool sample (fun) because he suspected C.diff. When that came back negative, I was scheduled for EGD and colonoscopy, both with biopsies.
Celiac and colitis
This was on April Fools Day 2014 (the joke was on me 🤭). The doctor was able to tell me immediately that I did have celiac disease, and my colon looked normal from what he could tell just by looking at it. It was a week later that the histology report came back with a diagnosis of lymphocytic colitis.
Trying to get the right treatment
So it's been 9 years of a strict gluten-free diet, which was supposed to put me in remission, right? Wrong. The microscopic colitis was in charge of my body. In my follow-up GI visits we tried a 6-week course of pepto bismol, which worked but wasn't a long term solution due to the danger of heavy metal poisoning. Metronidazole had no effect, mesalamine gave me fecal incontinence. We settled on budesonide, which I've been taking for 8 years. It worked well at first, then not so much, but the GI doc didn't want to move on to thiopurines or anti-TNF drugs because he thought I "wouldn't like the side effects". He CT- scanned me for lymphoma (negative) and re-did my scopes in 2018 with the same histology results. I got the distinct impression that he was getting bored with me. He and my primary care doctor were willing to continue prescribing budesonide, so I schlepped along with that and my old buddy pepto bismol and quit seeing the GI doc.
Moving states and doctors
Fast forward to December 2022. My husband and I had moved to a different state and I got a new primary care doctor who gave me a GI referral and a budesonide prescription. I dragged my feet until the budesonide refills were about to run out and I had to see the GI doc. My symptoms were also getting worse and affecting my mood and disrupting my sleep. At the initial consultation, the GI doc ordered new scopes/biopsies, but I had to wait until April 2023 to get them done. Long story short, my inflammation has worsened and now includes my stomach (no H.pylori, though) as well as intestines. I start an 8-week course of prednisone tomorrow and am waiting on a TPMT blood test result to see whether I'm a candidate for azathioprine.
Finding comfort in others' stories
I'm happy to get the prednisone, as I've had short courses of it in the past for other conditions, but I'm aware that it, much like pepto bismol, isn't a long term solution. I'm more nervous about the azathioprine, but since the budesonide is no longer working, I'm ready to try something new. I've got things to do and places to see this summer! I discovered this site in the days leading up to my recent scopes and have been obsessively reading all your stories. It makes the idea of trying an immunosuppressant a little less scary. If you made it this far, thanks for reading!
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