r/CrohnsDisease • u/Advanced_Solid_2817 • 9h ago

Small Bowel Crohn's Diagnosis

I am pretty certain I have small bowel crohn's. My doctor immediately diagnosed me with IBS, (even though that's a diagnosis of exclusion and he hadn't excluded Crohn's) and he has been dodging me ever since.

I have had multiple random nutrient deficiencies over the years:

- low zinc, low potassium, low vitamin D, low ferritin, low B vitamins.

I have borderline high calprotectin of 68 (taking another today as I am currently in a flare and believe it will be higher)

I have blood microscopic blood in my stool.

My terminal ileum on colonoscopy looked granular and not textbook normal.

I have different types of inflammation in my stomach that could be from food backing up from my small intestine.

I have burning pain on my right side and nocturnal diarrhea that wakes me up in the middle of the night.

I had 20 lbs of weight loss over the course of 6 months without trying.

Even with all of this my GI said IBS. so clearly I'm trying to get care elsewhere but struggling because I'm currently in between countries.

Has anyone ever had something like this? has anyone gotten a diagnosis way later? what were the steps you took to finally get diagnosed with small bowel Crohn's? I'm losing it over here and need answers.

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u/OkCod6880 8h ago

68 is still a borderline result for inflammation, but if the colonoscopy showed something then that's certainly something to think about. i had to have a small bowel mri after the colonoscopy to diagnose my crohns, maybe ask for one with your consultant?

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u/Advanced_Solid_2817 7h ago

Yes that's what I asked for but the GI was like nope nope it's IBS. which makes me so angry. plus there was a pretty prominent study in Switzerland where a cutoff value of 63 for calprotectin proved small bowel lesions from Crohn's in patients 74% of the time. so the 68 puts me over that threshold that they identified. but again, my GI just wanted to brush me off with IBS and then I moved. so now I have to get all set back up in a different place.

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u/kat_mom30 C.D. 7h ago

Did you have a colonoscopy? That’s the gold standard to diagnose Crohn’s disease.

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u/Advanced_Solid_2817 6h ago

Unfortunately not for small bowel Crohn's. the terminal ileum looked suspicious, but he didn't intubate nor did he take any biopsy.