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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
Reply posted for JonfromLA.
I was just diagnosed with crohn's in my small bowel. My pain is in my right side abdomen, like where your floating rib is. It feels like something is trying to burst out of my body, a horrible pinch. When the pain is really bad I cant find a position that is comfortable. Its scary' I am a tough women's birthed 4 boys naturally' but this can kick my ass. You are not alone. I am going to Stanford hospital October 1st to talk to the best and figure out my plan. I have a son with u/c and I have watched him go through so much, thank God it's not pain, but a lot of treatments and meds. I am at a point in my life where I just finished two medical certifications and I am finally able to work in a field I have be waiting for. And now I have CROHNS.
Reply posted for phmokda.
I am a retired MD who developed Crohn's colitis three years ago at age 67. I was not on steroids but have been on Stelera for 15 months. I just had a flare up with a partial small bowel obstruction. It resolved with IV fluids and pain meds. Suregery is the LAST thing I want to consider.This flare was likely my fault after ingesting seeds that my IBD doc had warned me not to do. I would urge you to disucss this treatment with your doctor(s). Your pain in the upper abdomen is not uncommon and is what we call "rerferred" pain. The anatomic location of the diseased body part is not always accurate for location of pain. For example heart pains or angina are "referred" to the neck or back or left arm.