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Inconclusive yet suggestive enough

Hi all,

My name is Mia and I am 24 years old. This year, for the first time ever, I am facing a potential diagnosis of Crohn’s disease. I have done colonoscopy/endoscopy and blood work, both of which came back “normal” save for a vitamin D deficiency (actually, I initially sought out medical help for a low BUN I had, but then that leveled itself out and other problems arose). My stool tests indicate malabsorption. I had an MRI that showed a “possible suggestion” of terminal ileitis, but my GI doesn’t want to diagnose yet. Next up is the capsular endoscopy and I can’t stop thinking about what my results will be.

I have had chronic diarrhea for as long as I can remember. Being totally embarrassed by it, I learned to manage it on my own. For years it never irritated my stomach more than an occasional stomach ache. Here I am now. I’ve been experiencing weight loss, fatty stool, abdominal pain and swelling, rectal cramps, joint pain, fibromyalgia, and downright hellish fatigue for a couple years now and each symptom keeps getting worse.

Basically it all went down like this:
*skipping forward 3 years of unfruitful consultations regarding fatigue and pain and getting told I have IBS*
Went to doc to check out BUN. She refers me to rheumatologist for fatigue and pain. Rheumatologist doesn’t pick anything up, she refers me to gastroenterologist. GI checked me out and detected major tenderness in lower right abdomen and says, based on my amount of weight loss, it would be malpractice not to look for Crohn’s. Have been testing for weeks now and all they found is methane positive SIBO. Meanwhile, the cramps are getting worse. I’m experiencing distinct “flares” which last around 5 days in which I experience nocturnal diarrhea and awful breath-taking cramps which stop my in my tracks and come and go in waves. Then I might have constipated-ish bm (lots of mucus) once the flare calms and thusly the cycle repeats. Additionally, lymph nodes at the back of my throat have swelled and cobblestoned. My joints are still killing me. My appetite is degrading. And I’m just so f*cking tired.

The GI said despite the MRI results and my symptoms, there’s a possibility she won’t see any inflammation on the capsular endoscopy. She also said it’s possible that I am having my first real flare, which makes it harder to test for. I am a couple weeks out for the test and can’t really imagine IBS and SIBO making me feel the way I do. I guess I am afraid the source of my pain will be so subtle it will continue to go unseen and I will have to go through all of this again.

Has anyone else gotten diagnosed in the early stages of Crohn’s?
Hi Mia, my name is Hilda and I'm 52 y/o and I was recently told that I have early stage Crohn's . I also had 2 normal colonoscopies and upper endoscopes biopsies showed mild inflammation even had a second opinion read of my biopsies and still nothing. After a Pill scan my GI found bleeding ulcers in the very lower part of my small intestine. Never really have diarrhea since I was put on Cholestyramine after my gallbladder was removed. I do get the Fatigue and body aches and sometimes I run a low grade fever.Now I'm waiting for my insurance to approve my Humira. Hope you get some answers with you capsule endoscopy, Good Luck