Hi, I've been reading posts on this forum for years, its been very informative and helpful.
I was diagnosed with UC in 2004 (12 years old) and after trying all the medications I had a colectomy in 2009. Since it was UC (or so we thought at the time), they left behind the rectal stump for reconnection. The following few years were great, I finally had a life outside of the hospital again, but obviously that just couldn't last... I continued to have some bloody mucous/discharge from the bottom end but it was not bothersome, until I developed two perianal fistulas. Then things just kept piling on- arthritis, erythema nodusum, uvitis/scleritis, chronic bronchitis. Foolishly, I tried to avoid the proctectomy my doctor kept pushing because I thought I would be able to get those few inches of colonic inflammation under control without another major operation (tried LDN, naturopaths, diets, IV therapy in Mexico).
Well, now things are even worse- I got diagnosed with pyoderma gangrenosum last week, and now I've been admitted in hospital because they also found that I have vasculitis- inflammation in my major blood vessels. I'm at such a loss, these new diseases I've been told are independent of IBD and will follow their own course. Treatment sucks - all they really have is prednisone (thought I was done with that after my surgery).
My GI doctor is still insisting on the proctectomy surgery- if its not even going to help with these new diseases, is it even worth the risk of going through a major operation while on prednisone? I know the healing is difficult enough on its own, I'm worried about the added stress of being immunosuppressed.
I was diagnosed with UC in 2004 (12 years old) and after trying all the medications I had a colectomy in 2009. Since it was UC (or so we thought at the time), they left behind the rectal stump for reconnection. The following few years were great, I finally had a life outside of the hospital again, but obviously that just couldn't last... I continued to have some bloody mucous/discharge from the bottom end but it was not bothersome, until I developed two perianal fistulas. Then things just kept piling on- arthritis, erythema nodusum, uvitis/scleritis, chronic bronchitis. Foolishly, I tried to avoid the proctectomy my doctor kept pushing because I thought I would be able to get those few inches of colonic inflammation under control without another major operation (tried LDN, naturopaths, diets, IV therapy in Mexico).
Well, now things are even worse- I got diagnosed with pyoderma gangrenosum last week, and now I've been admitted in hospital because they also found that I have vasculitis- inflammation in my major blood vessels. I'm at such a loss, these new diseases I've been told are independent of IBD and will follow their own course. Treatment sucks - all they really have is prednisone (thought I was done with that after my surgery).
My GI doctor is still insisting on the proctectomy surgery- if its not even going to help with these new diseases, is it even worth the risk of going through a major operation while on prednisone? I know the healing is difficult enough on its own, I'm worried about the added stress of being immunosuppressed.
