• 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.

Frustratingly undiagnosed

Hey there, I’m new to the forum and this is my first post

I’m 22 now, April 2017 was my first “attack” as I’d come to call them. 8 hours of relentless abdominal pain, diarrhea and vomiting. The first three times it happened I chalked it up to food poisoning, after the 9th time, I saw a doctor. At that point, the pain in my left side was chronic, The doctor told me to drink more water and see a therapist (FOR REAL??)
I saw one more doctor who relayed my pain to the stress of college. So I gave up and saw a psychologist who told me I was fine and all of my stress and frustration seems to be coming from the fact that I’m in constant pain.
Fast forward to Christmas Eve 2017, I go to the ER because I can’t even sit up I’m in so much pain. They do an x Ray (I still don’t really know what they found) but they told me to see a GI specialist. So over the next few months I have a colonoscopy, endoscopy, blood work, severe diet change and a CT scan.
They found erosion in my terminal Illium as well as gastritis, my iron is low, my CRP is high, my globulin is low, and my appendix is fluid filled. None of this is enough for a conclusive diagnosis of anything. So here i am, down 30 pounds since Christmas, taking Bentyl and on a very strict low-fodmap diet. Very discouraged and still in pain.
My dad has Crohn's so I recently switched to seeing his doctor and they’re investigating my small bowel on Wednesday as well a a full gynecological work up on Thursday, hoping for any answers.
 
With those symptoms you should be diagnosed. Unfortunately some doctors want illnesses to check every potential symptom box before they will mention a diagnosis. With a family history of crohn’s I’m surprised they didn’t see any inflammation as possible crohn’s. I’m glad you’re seeing another GI, and someone who is familiar with your family. Good luck.
 

Lynda Lynda

Member
Kailee: So glad to hear you will be getting a second opinion from your dads doctor.
I had all those tests too and the tests said terminal ileum / inflammation / stricture and gastritis.
I was diagnosed with Crohn's.
No pill cam for me because my doctor felt that it may get stuck.
My doctor noticed I had only lost 3 pounds so "I wasn' t wasting away." I cannot eat solid food but am drinking enough of those Ensure Drinks to probably gain weight ?

Hope you feel better soon !
Lynda
 
Top