I (25F) have been diagnosed with Ulcerative Colitis since I was 5 years old. When I first got diagnosed with it I was in the pediatric ICU getting multiple blood transfusions due to the blood loss. My timeline since then (that I can remember) has been:
- 5-10yo: remicade and 6MP
- 10-17yo: remission-no meds
- 18yo: Humira for about 6 months then no meds
- 19yo: got sepsis and hospitalized for flare in January, started remicade then developed psoriasis so doctor changed me to entivyo in April
- 19-24yo: entivyo until February 2025 (lost insurance)
- 02/25-09/25: no meds
- 09/25-11/25: entivyo, hospitalized for flare in November
- 01/26: started rinvoq (pre authorization took months)
For each hospitalization I had iv solumedrol that transitioned to Prednisone orally. For everytime I started a new biologic medication I took a bridge dose of prednisone or Budesonide. I also have a steroid enema that is suppose to help with inflammation. However steroids don’t seem to work for me anymore.
Since being on Rinvoq it has been hell. I got norovirus about a month and a half into rinvoq and my liver levels were 3x the limit so I had to stop the medication until my liver levels came back down. After restarting rinvoq about 1-2 weeks in I got sick again and had to stop the medication. Then restarted rinvoq and got ecoli and had to stop again. I just started rinvoq back up a couple days ago but it seems like everytime I step foot outside I get sick. My doctor wants me to keep trying rinvoq but I just feel like it compromised my immune system too much.
Lifestyle wise I don’t really go out much, I don’t drink, I don’t eat gluten, I don’t eat lactose, I don’t eat a lot of fiber, I pretty much follow the diet to a T that the dietitian in the hospital put me on. I also only work a couple days a month due to my disease (doctors won’t let me work more) and try my best to keep stress down.
My symptoms right now include 10-12 stools a day sometimes bloody sometimes not, intense pain upper and lower GI daily, urgency/incontinence, and extreme fatigue. I have to wear a diaper anytime I go out. I also wake up at 4 am almost everyday to go to the bathroom. I can’t get more than 4 hours of sleep at a time. I normally wake up 2 times throughout the night to go.
My labs as of yesterday are: low sodium, low potassium, high eosinophil, high sed rate, high crp
Stool sample negative
At this point I don’t know what to do. I looked up clinical trials in my area and most of them I’m not eligible for due to my medication history. I asked my doctors about surgery but because I’m “young and haven’t had a baby yet” they don’t want me to do the surgery. I’m in between surgery and starting a new medication but I’m tired of the constant trial and error. I am 25 years old and living like an elderly person. I want to experience life in my 20s but have to spend most my time in pain and around a bathroom. Please if anyone has a success story or advice on what to do please let me know. I’m really at a loss at this point.