Does anyone else have Crohn’s without the “classic” diarrhea symptoms?
Growing up I always had a somewhat sensitive stomach, but things really escalated in high school. Around 16/17 I started having symptoms that looked a lot like ulcerative colitis (which my dad has). I had a colonoscopy that showed ulcers in my colon, but my presentation wasn’t super typical. I had pain, bloating, heaviness, fatigue, etc., but almost no diarrhea or bleeding. They basically called it “unspecified colitis” and treated me as UC anyway.
I stayed on meds for a couple years, then had another colonoscopy around age 19 that was completely normal, so I went off medication. After that I mostly managed things through diet/lifestyle, but still dealt with a lot of bloating, abdominal pain/cramping, SIBO, food sensitivities (especially gluten/high FODMAP foods), fatigue, and random systemic/autoimmune-feeling symptoms for years. I always just assumed it was IBS because I could technically still function.
Then about a year ago things got significantly worse. I started getting constipation, severe upper abdominal gnawing/cramping pain, awful bloating and gas, iron deficiency, burning rashes after eating, joint pain, extreme fatigue/brain fog, worsening food intolerances, urgency/pain with bowel movements....
Still… basically no diarrhea, which is part of why I’ve felt so confused.
I had another colonoscopy earlier this year that showed ileitis in the terminal ileum, and a capsule endoscopy later found ulcers in my small intestine. One of my Crohn’s blood markers was also mildly elevated. Oddly though, the biopsies themselves weren’t very “classic Crohn’s,” which has added to my uncertainty.
My GI is essentially treating this as Crohn’s at this point and we’re trying to get a biologic approved (insurance denied Entyvio first, now trying Remicade). I think part of my fear is that because I don’t present like the stereotypical Crohn’s patient, I worry biologics won’t work for me or that maybe I’m missing something.
I guess I’m just wondering:
- does anyone else here have Crohn’s without much diarrhea?
- did anyone else present more with systemic symptoms (fatigue, joint pain, rashes, brain fog, etc.) than bowel symptoms?
- has anyone had relatively nonspecific biopsies but still ended up with a Crohn’s diagnosis?
I also wonder sometimes whether years of strict diet/lifestyle management may have partially kept things “contained,” because I genuinely think my symptoms would be worse if I wasn’t already so careful with food, stress, sleep, activity, etc.
If your story sounds like mine please tell me what has worked for you!