Just venting, this feels like forever
Got diagnosed with UC in 2023. I started noticing a ton of blood in my stool and basically knew right away because my dad has UC. I got diagnosed and into remission really quickly with Stelara and I completely took my remission for granted the last three years. I totally 100 percent believed my UC would never return.
I had a clear colonoscopy in November 2025, Mayo score 0 no ulcerations. Was starting family planning with my husband and was so excited about the future. In December 2025, Stelara randomly failed. The blood came back but this time, mental health symptoms became out of control, my fatigue was unlike anything I’ve ever experienced, going to the bathroom 15-20 times per day. I lost 15 pounds. No explanation from my dr about why this happened, it took me months to get my GI doc to believe me because he couldn’t understand how I could go from clear to a flare in one month. It took 3 additional months for them to agree to change my medication, another colonoscopy which I scored a mayo 3, 8 cm of ulcerations. I had to leave my full time job as an occupational therapist and do contract work. I still don’t trust myself to be able to work full time which is financially straining.
I’m on skyrizi now and it’s working so slowly. Some days I have improvements and some days it’s just constant blood. I want my life back. I’m so sick of this. It’s so hard to watch friends my age be healthy and having babies, being able to work full time with no fatigue. My husband, friends and family try to support but nobody really understands. Would love to hear any hopeful stories that this does end and you can achieve remission and get your life back. Thinking of everyone suffering right now. This sucks!!!