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total proctocolectomy with j pouch, failed all meds


Thu, October 25, 2012 2:57 PM

I am now 27 and have been sick since I was 15, so 12 years now. Originally diagnosed with UC tried all pills, suppository, you name it. Tried a clinical trial for Humira, no help. Finally after 8 years of suffering I gave in to my doctor for surgery. I had a wonderful surgeon perform my total proctocolectomy with j pouch. I had an ostomy for 4 months (the best 4 months of my life) then a reversal. I had about 6 months of relief then the pain came back. I was diagnosed with pouchitis and was on and off antibiotics for a year before they scoped and biopsied and said Crohns. Now I've been treated for CD for about 2 years and I've tried all biologics - Humira, Cimzia, Remicade (anaphylaxis) and tested positive for the JC antibody for Tysabri. I am now seeing a Dr in NY and all they can tell me is we can play around with all the medications I've already tried to find something to lessen my symptoms but they will never be down to zero. This is until new drugs are released. I've also been told I do not qualify for any studies because I have a pouch. For right now I am on Entocort 3 capsules for breakfast in applesauce, 100mg of Imuran and Canasa at night. I am only 4'11 and 100lbs. I barely eat, sleep or feel like I can function some days. Lately it's hard for me to get out of bed I'm so depressed. I take 20mg of Lexapro and 1mg of Klonopin twice a day. I don't know what to do anymore. I feel like no one understands or believes my symptoms.

FPO akaquila
Joined Oct 23, 2012

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