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To J Pouch or Not to J Pouch?

Michael S fullIntroduction:

Hello, My name is Michael Schroll and I was diagnosed with Ulcerative Colitis in 2010. I feel like I’ve tried everything but nothing seems to help. I had a recent colonoscopy on September 4th and have moderate to severe colitis with mostly my left side inflamed.

Some more about me:

I enjoy riding motorcycle and photography. I can juggle and am currently learning how to ride a unicycle. I’m a film major from Miami,FL.

Symptoms:

Blood in stool, frequent bowel movements, urgency, fatigue

To J Pouch or Not to J Pouch?

I began to feel sick on my return trip from El Salvador. I lost a lot of weight when I returned to Miami and thought I just had food poisoning. It got so bad my family decided to take me to the hospital. I had lost about 15 lbs. and was extremely dehydrated. I spent the night and was told to visit a G.I doctor. I was still in High School at the time and would skip breakfast to avoid any accidents.

After my first colonoscopy I was officially diagnosed and was told I would need to be on medication for the rest of my life. (Not exactly the graduation present I was expecting.) I have an uncle with UC in remission who was very supportive and helped calm down my family. I thought I would just have to alter my diet and avoid alcohol. NOPE, I also had to learn how to spot the nearest bathroom and deal with flare ups. At first it was very strange for the Dr. to check out my bum and ask about my B.M’s. After about 2 weeks I could care less about giving stool samples and any other procedures.

Fast forward to now and I still haven’t found a medication to put me in remission. Prednisone has caused severe acne and my face puffed up. My G.I told me I could try a clinical study but it seems too risky. I might get a placebo and I’d have to wait 8 weeks, since I just had a remicade infusion. I want to have the J Pouch surgery but my entire family is against it. They think I should keep waiting for some miracle drug to appear. I am concerned about having the surgery and regretting it after. Here are some questions for those with the surgery.

-Do you have any urgency?
-Do you regret it?
-Number of B.M’s per day?
-Is your diet different?

Thanks for any feedback!

Medications I’m Trying/Tried:

Prednisone- 10mg
Azathioprine- 150mg
remicade- Every 4 weeks
Pentasa- 500mg

written by Michael

submitted in the colitis venting area