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3,008
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13 y
vasculiitis in colon?
Ten days ago I had emergency surgery due to ischemic colon, and he took out almost my whole colon! He didn't tell me that when I was in the hopsital. He said it could be reversed in 3 months, but now he says he can't do it! I have a colostomy and may never be able to get it fixed. All the blood vessels were clotted, in and out. He said it's probably a form of autoimmune vasculitis and I need to find a rheumatologist. Pathology report wont be back for a week or more.
The ER CT scan in November said it was from the splenic flexure to the descending colon, the rectum was "spared", and now he said it had expanded to the transverse colon and rectum. I showed my doc and the GI doc the first CT scan and they still made me wait another month to be seen! I couldn't eat, or even drink and was in severe pain. I thought I was going to die.
I'm angry the GI doc wouldn't see me, and I had to go to the ER again near death to get help. If they would have taken me seriously this summer and done a colonoscopy this may have been avoided. It sounds like steroids could have helped vasculitis if they caught it early.
It's been a real nightmare. I don't know what kind of hope there is for me now.
I'm trying to stay positive, but it's difficult.