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Reply to "How did you decide it was time for surgery?"

I was diagnosed with pancolitis when I was 16 in 1972. Nearly a month in the hospital and IV steroids plus hydrocortisone enemas finally turned things around. I stayed in remission for about 23 years and was hit with another severe bout of pancolitis. I tried prednisone for six months to no avail. Remicade was experimental at that time. It was colectomy or eventually waste away or bleed to death. I had a family to raise and did not have the time to screw around being sick all the time.

Prednisone should never be considered a long term solution, since it damages nearly every system in your body. In the long run you do yourself no favors by delaying things by thinking that you are doing well on prednisone. The reason that biologics have made such a big splash is that they can get you off steroids and possibly avoid colectomy. But if they do not work, colectomy can save your life, your bone health, your eyes, your heart, your adrenals, your stomach, etc. from the ravages of prednisone.

Jan

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