Is surgery required for ulcerative colitis in young adults?

Question

Hi doctor,

I am 31 and was diagnosed with ulcerative colitis eight months ago, but I feel like it is getting worse instead of better. I am having 15 to 20 bloody bowel movements per day, and the urgency is destroying my life. I cannot leave the house without knowing exactly where every bathroom is located. I had to quit my marketing job because I could not handle client meetings anymore. The medications are not helping much. I am on Mesalamine and Prednisone, but the side effects are awful. The steroids make me feel crazy, and I have gained 25 pounds. My gastroenterologist mentions biologics, but they are incredibly expensive, and I lost my good insurance when I quit my job. I am exhausted all the time, and my iron levels are low from bleeding. My boyfriend tries to be understanding, but I can see that this is affecting our relationship. We cannot go to restaurants or travel anymore. I am only 31, and I feel like my social life is over. My sister thinks I should get my colon removed, but that seems extreme. Are there other treatment options I have not tried? How do I know if this will ever get better or if I will need surgery eventually?

Thanks.

Answer 1

Hi,

Welcome to icliniq.com.

I can understand your concern.

You are dealing with severe ulcerative colitis, and your current treatment is not enough. Having 15 to 20 bloody stools daily, urgency, fatigue, and steroid side effects means it is time to escalate care.

1. You need advanced treatment: Mesalamine and Prednisone are not controlling your disease. It is time to consider biologics (like Remicade, Humira, Stelara, and Entyvio) or JAK (Janus kinase inhibitor) like Rinvoq or Xeljanz. These can bring remission and allow you to taper off steroids safely.

2. Cost help is available: Even without insurance, patient assistance programs from manufacturers can cover most or all costs. Ask your doctor or a social worker for help applying.

3. Surgery is not a failure: If medicines fail, colectomy can restore your quality of life. Many people live full, active lives after surgery. Meet with a surgeon to understand your options, just to be prepared.

4. Fix the iron deficiency: You likely need IV (intravenous) iron infusions to treat bleeding-related anemia. This will help with energy and brain fog.

5. Protect your mental health: Chronic illness affects your relationships and self-worth. Counselling and IBD (inflammatory bowel disease) support groups can help you cope and communicate better with your partner.

Kindly do the following:

Talk to your GI (gastrointestinal) specialist about starting a biologic or JAK (Janus kinase inhibitor).
Apply for financial assistance.
Ask about IV iron.
Consider consulting with a colorectal surgeon.

I hope this information will help you.

Thanks.