Started late in life
I had a bag for four years and thought I might try something better. I had a J Pouch installed, and again. almost died due to peritonitis. I was taken to St Petersburg, FL for surgery to have a BCIR created. (Barnett Continent Internal Reservoir). After 13 hours of surgery and 19 days in recovery. I walked out a new man. Best option I had ever considered, yet few know about the procedure. Heard about it Word of Mouth.
Within a couple of years I developed Pyoderma gangrenosum in my ankle.
After a major dose of prednisone. I began Remicade injections for two years. I had a reaction and was switched to Humira , which I injected for seven years.
Because of the cost and fairly no noticeable bad side effects for me, I stopped injections. I have been off now for over a year, with my gastro’s approval.
Now it appears I have a lot of inflammation all over my body. I have lost 10 pounds recently, and my fatigue is incredible. I have developed a persistent cough that has lasted over a month. I recently had to have my left eyeball treated for Uveitis, an inflammation of the eyeball.
Diet does not seem to matter since I eat almost anything. I have little or no pain in my abdominal track, just joint pain in my feet, hands and back.
I am currently under going testing and work ups. Some tests have indicated high white blood cells fighting infection. My folic acid is low. I did start taking turmeric pills and cipro, and I am showing improvement. But I know I have pouchitis and other inflammation through my body.
I was originally diagnosed with UC, but they are never really sure. It’s autoimmune inflammation and I am hoping not to return to Humira.
I feel Blessed after reading the comments from many that suffer from this disabling embarrassing disease. Never give up on hope and prayer... with so many affected with this disease, we must find a cure.
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