Microscopic Colitis, gaslighting and just so very sad.
I am so beyond frustrated and just needed to share this with people who get it. I’ve been dealing with a total nightmare for the last year.
I have a biopsy-confirmed diagnosis of Lymphocytic Colitis from June 2025, that was preformed by a different GI than the one I see now. I’ve been through the wringer with meds—Sertraline, Budesonide, Bismuth, Mesalazine, Low Dose Naltroxene (which I highly recommend for stomach pain)—you name it. Some gave me such bad stomach pain, weakness that I had to stop, and others just didn’t work. Because I didn't have a "textbook" recovery, my insurance medical consultant is basically trying to rewrite my medical history for their claim purposes.
The "Horse Shit" I’m dealing with in this report from them:
Even though I have a pathology report, they are now labeling me as "Diarrhoea NYD" (Not Yet Diagnosed). They’re claiming that since I didn't respond to the standard treatments, the original diagnosis was probably wrong….
They’re trying to say it’s actually IBS because my symptoms "wax and wane" and because I have anxiety/depression. They literally wrote that an IBS diagnosis "fits" better given my mental health.
They are using a normal CRP test from September to claim there's "no objective evidence" of inflammation. We all know CRP is notoriously unreliable for microscopic colitis, but they’re using it to call my symptoms "self-reported". I even had more reliable Calprotectin tests done which yielded inflammation through the roof.
They actually put in the report that I ate spicy Habanero chicken strips once at Halloween, which was the week before I started getting symptoms. I noted this to my GI when she asked me when symptoms started and now the are using it to imply I’m not actually that sick. It was the only thing that I could think of at the time that was out of the ordinary for me digestively.
They’re calling my fatigue and dizziness "deconditioning" from not being active enough. I’m in the bathroom most of the day. Like how active am I supposed to be? It even stated that, the consultant notes that I have family with IBD and that I appeared to believe I have the condition because I joined IBD support groups. It’s incredibly insulting—they are basically implying I’ve somehow talked myself into a diagnosis, because of my family history…..so I just made up my biopsy results preformed by a gastroenterologist as well then?
My GI was so hurtful through this and just completely condescending. She would rapid fire questions at me during follow ups about meds that I would just start to panic. She literally asked me what meds she put me on because she didn’t note them properly. She never even bothered trying to obtain a copy of my initial diagnosis and just said well you must have IBS then. She wanted to do another scope and never mentioned a biopsy so I said no. I spent months trying to find another GI, having my GP send our referrals left and right. No luck with that because every response we would get back was that I already had a diagnosis, already have a GI and that I am being “treated”.
I feel completely gaslit. I’m currently back on Budesonide at a different dose that my GP recommended and it is helping a bit, it has only been a week and a half so that is promising and which literally proves the original diagnosis was right.
Has anyone else dealt with an insurance company trying to "demote" your IBD to IBS just because your labs came back normal or you were a "non-responder" to the first round of meds? I am disgusted.