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i was diagnosed in 2011 - first with a barium swallow then confirmed with colonoscopy/endoscopy- it’s a relatively small 10cm segment in my terminal ilium...I’ve been surviving on prednisone which has gone from 2-3 times a year to almost every month to the point now that I’m having to increase my normal dose just to get by.
I have been adamant that I don’t want to start taking medication for this so after 8 years of steroids, my doctor is suggesting a resection. I have no problem doing this if it’ll really put an end to this problem. I’m going in for a CT scan this week then meeting with my GI to potentially schedule the surgery.
What I don’t understand is that although my crohns is in the terminal ilieum, my pain during flare ups is in my upper abdomen almost in my sternum. I obviously intend on discussing this further but now that the idea of surgery has become “real” I would be absolutely devastated if we went through it all only to discover it didn’t fix my issue - does anyone have any thoughts or similar experience? It just doesn’t add up that I would be having chronic upper abdominal pain from a diseased segment in the very lowest point of my digestive tract