About a year ago, I began to have trouble with the area around my stoma. I was hospitalized three times due to the pain. They (doctors) assumed it was a horrible abscess and began to prep me for surgery. They then decided it was my Crohn's manifesting on the outside of my skin. The term is "pyoderma gangranosum." I am changing my appliance EVERY day. I am on steroids due to kidney failure and the Crohn's coming back. I guess my question is - has anyone ever had this before? My surgeon thinks I may need another surgery to move my stoma??? The pyoderma is breaking down the skin and is extremely painful!!! Are you kidding me??? I've been battling this for a year now. The steroids are keeping the site the same. I'm in a lot of pain but just avoiding the issue due to maybe needing more surgery.... I NEVER complain but was just wondering if anyone has dealt with this. And if so, has anyone had the surgery to move the stoma??? Any advice or help would be greatly appreciated!!! Thank you!
Hi Shell....I had the same type of problem. I went to a few derma. doctors and couldn't get any help. Finally, I found a doctor out of Johns Hopkins here in Maryland. He put me on a drug called CellCept (sp?). You are so right. The pain was like that of a 3rd degree burn. After about 2-3 months of the drugs, the pyoderma gangranosum cleared up and went away. Of course, it left me with one heck of a scar. I suggest searching for a good derma. doctor. Good luck.
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Thank you so much! After being hospitalized, the doctors referred me to a dermatologist. He put me on a topical steroid along with the prednisone I'm taking. I have been on both steroids for 7 months. Unfortunately, nothing has changed. The pain is better but the site is awful. I will certainly look into the drug you mentioned! Thank you! Michele-
I got a really severe case of pyoderma G. on my lower legs. I can't recall if it was before or after my ostomy surgery, but I do remember what a nightmare it was to live with and treat. Only the head of the dermatology lab at the hospital knew what it was after my ostomy nurse and surgeon were clueless. All they put me on was a massive dose of prednisone, but it did eventually go away. - But the scars will forever be there to remind me of the pain and misery.