Managing Cystic Fibrosis and Ulcerative Colitis

I was diagnosed with CF as a baby in spring 1999, and all my life I had to learn how to do things other people my age didn't do, like vest treatments, nebulizer treatments, and go to the doctor's for check-ups and the hospital when I was sick. As I became an adult, I was a pro at handling my everyday routine well and when I was sick. But that all changed in 2022 when I noticed blood in my stools and more trips to the bathroom to go #2 than usual. I had already had GI issues since I was 16 from starting Orkambi and later Tricafta at age 21, with constipation every now and then, so I eventually saw a Gastroenterologist (GI) doctor who then diagnosed me after getting a colonoscopy in Summer 2022 with Ulcerative Colitis, a class of IBD. They put me on a non-steroidal medication, but it didn't help, so I did steroids on and off for 2 years, along with two biologic medications to treat my UC symptoms. The first biologic treatment didn't help and made my symptoms worse with more trips to the bathroom, cramping pain like I was on my period, loss of appetite, nausea and vomiting, and severe loss of blood to the point that my blood cell counts were really low and I was visibly pale and would black out for several seconds if I walked for long periods of time.

I had to go to the ER to be admitted for two separate blood transfusions. After that, I started a new biologic medication, but it only helped for a few months before my symptoms returned. I then had to get a new GI doctor at a bigger hospital who specialized in my severe case of UC and gave me one last hope with another biologic medication before considering surgery to remove my colon and miracle of miracles, the new medication worked and I've been in readmission of my UC symptoms for two years at the expense of my immune health not being great with my CF and having more hospital stays and getting sick more often with cold virus', hemoptysis (coughing up blood) and even COVID-19 again after I had it once in 2021. So in conclusion, I'm not 100% sure how many CF patients got diagnosed with IBD-related diseases after having GI issues from taking CF modulator medications, but if anyone can relate, please feel free to comment and let me know.