• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Had it since I was 10

It took my doctors a year to diagnose me because they really never heard of Crohns attacking someone that young before. After years of jamming Ensure and several medications down my throat for several years, my Crohns was under some control, or some might say managed. I was on the same medication for 20 + years. New city, new doctor. Long story short, my new Dr. jammed a scope through my colon and I woke up on the operating table to have emergency surgery. 8 inches of my colon removed.

I am just very frustrated with this disease. After years of managing it, it has become quite unpredictable
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the community. Wow, I'm so sorry to hear about the perforated colon. It's rare, but unfortunately does happen from time to time.

Like DJW, I'm curious what medication you're on now?
 
I've had Crohn's since I was 13 back in 1978. I was originally misdiagnosed with Colitis. It took the doctors 26 years to get a proper diagnosis of A-typical CD. I was one of the first people to get a capsule endoscopy back when it was brand new. If it wasn't for the technology I would still have a diagnosis of UC. I've spent most of my life managing my symptoms and I understand how frustrating it can be. Hang in there, do your best through the difficult times, and live with a positive attitude.
 
I'm so sorry you had to have emergency surgery!!! My 9 year old son was just diagnosed with Crohn's 😞 I really hope that he never has to face these challenges! I'm afraid instead I may just have to prepare him with the strength, confidence, and courage to overcome whatever comes his way 😳 how have you coped for so long?
 
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