Living with IBD: General symptoms and questions

Hey everyone,

I’ve been battling gut issues for about two years now, and honestly, it feels just like Crohn's, even though I don't officially have it. My colonoscopy came back clear, but my labs are all over the place—elevated liver enzymes, high copper levels in my urine, high creatinine, and some endom in my small intestine. You can actually see the thickening and inflammation in the small intestine during scans, but they keep telling me it isn't Crohn. The doctors say there’s definitely inflammation happening, but they're totally stumped on the cause or how to actually treat it. Has anyone else gone through something similar? Just trying to figure out what my next move should be.

Joshua Cruz48 said:Hey everyone,

I've been dealing with gut issues for about two years now—it feels a lot like Crohn's, even though I don't actually have Crohn's. My colonoscopy came back normal, but my liver enzymes are high, there's elevated copper in my urine, high creatinine levels, and some endom in the small intestine. You can actually see the thickening and inflammation in the small intestine, but it doesn't qualify as Crohn's. The doctors tell me it's some kind of inflammation, but they seem stumped on the actual cause or how to treat it. Has anyone else dealt with something similar? I'm honestly just wondering what my next move should be.

Get a second opinion, maybe dig a bit deeper into the testing...

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mellowskipper said:I have a different take

This is a must-read.
My Crohn's was actually treated like I was just being a hypochondriac at first—so instead of seeing a gastroenterologist, I ended up talking to a psychiatrist because that's what the insurance company decided 🙄

Joshua Cruz48 said:Hey everyone,

I've been battling gut issues for two years now. My symptoms look a lot like Crohn's, but they've told me it isn't Crohn's. Colonoscopy came back clear, but my liver enzymes are high, there's elevated copper in my urine, high creatinine levels, and edema in the small intestine. You can actually see the thickening and inflammation in the small bowel, but according to the docs, it's not Crohn's. They're basically saying it's some kind of inflammation, but they have no clue what's causing it or how to treat it. Has anyone dealt with anything similar? I'm at a total loss on what to do next.

Which one exactly? Some specific degeneration or something else? 😬
The extra "n" in your term is unnecessary; in your case, it's just edema. 😉

Honestly, I haven't the slightest clue what this could be. If they are absolutely, positively certain that it isn't Crohn's—meaning the inflammation was confirmed via gastroscopy in the proximal small intestine or some other method—then there are very few possibilities left. The only thing that jumps to mind is celiac disease (gluten enteropathy). You really need to find an IBD specialist; they’ll be familiar with the rarer conditions and might actually have some useful differential diagnoses for you.