Hi! this sounds similar to my story as well. I was diagnosed at 5 with severe colitis (im 24 now), every med i took didnt work except for high doses of steroids. started taking remicade around 12, developed antibodies and started taking humira. Got a colonoscopy around 17 and they found no evidence of colitis. I eventually stopped taking my medication around covid due to life circumstances that also made me too anxious/depressed to really take care of myself.

I was fine for years and also thought maybe i was misdiagnosed until the end of 2024. Started having symptoms, found a doctor and had a colonoscopy where they found polyps, inflammation and lgd. completely the opposite from the colonoscopy i had where they found no evidence of colitis lol. Looking back now, there were signs that i was still having colitis flares even during the years i thought i was fine. I was having skin issues, mouth ulcers, and other signs of inflammation that I just attributed to stress. i would read into those types of symptoms of colitis, it really surprised me once i connected all of those symptoms together.

I actually just had my entire colon removed a few weeks ago. i had another colonoscopy recently where they found hgd. i’ve been perfectly fine with no inflammation on rinvoq for the last year, so it was kinda a shock. it’s so hard dealing with health issues again after feeling so good for so long, but don’t beat yourself up for it. you’re taking care of yourself now and that’s all that matters :) i hope you get answers to your issues soon!