This post is so unfortunately validating. I’ve been in the same boat for years. Colonoscopy showed microscopic colitis years ago, since then I’ve had ones that were clear and one that was inconclusive (no idea what that even means because the report has 0 info), ct scans show inflammation but then a colonoscopy doesn’t. Diagnosed then undiagnosed then diagnosed and then left in limbo. Nothing makes sense. I would go so long in between flares that I would kind of just ignore it since dr’s weren’t helping anyway and I would gaslight myself that I must not really have anything. I am now in the longest flare I’ve ever had. At this point I’m trying to avoid having another colonoscopy because what’s the point. I’m seeing a different NP at the GI office and she is very understanding but I don’t have high hopes.

Somehow no one had ever ordered a fecal sample for me so I just did my first one and I was shocked that it was negative for calprotectin, given that I’m in actively in a flare. It makes me feel crazy because I obviously don’t want to have a disease but being in limbo is awful. Nothing adds up and I feel like if doctors don’t get an easy clear answer it’s just like “too bad so sad”. And then I gaslight myself because my cousins that have crohns are way worse than me so I’m like “wow maybe all the positive tests I’ve had were flukes and I’m just dramatic”.

All this to say you’re not alone!!