- CASE FILE
My son's suffered an incurable and undefinable inflammatory bowel disease that doesn't respond to treatment or medication over twelve years.
ABOUT THIS CASE FILE
My son was diagnosed at two years old with ulcerative colitis. He has never responded to medication or treatment. His case was so severe and untreatable that he was presented at a symposium of gastroenterologists. They recommended he have his colon completely removed, that he would otherwise die. The surgery was done. His body remained sick and he never responded to treatment or the surgery they way he should have. The currently call his condition Crohn's disease, but it doesn't truly act like Crohn's either. He had an ileostomy installed last year, as a step toward rebuilding his bowels. Surgeons have now refused to continue the next step of the surgery and tell him to just get used to the ostomy. He is a teenage boy and does not want to live like that. His bowels are always severely inflamed. He is on all kinds of medications that do little to nothing. His disease flared up a couple of years ago so severely that it left his bowels, placed itself in his lungs, and again endangered his life.
No one knows what to do with his condition, or even truly what to call it.