lurking inflammation

Hi. I'm a new member here who has read these posts for a few months.

I was DXed with UC in 2010 but thankfully with Asacol and 6mp I have been in remission since 2012. Over the last year I have had a multitude of small but annoying health issues; sinus issues, fatigue, joint issues, mouth ulcers, left blank pain, bloating to name but a few. I had a suspicion that when my 2-yearly scope happened in September last year that active UC would be found but it came back clean and the biopsy was clear. Yet I continue to have these vague issues which remind me so much of my UC bad days but without the diaherra, blood and mucus. My CRP is also low and my other bloods test out fine.

My suspicion remains that my ongoing mild but vague issues may still be IBD related but the lack of lower GI symptoms and a clean scope and low CRP refute this. I have been wondering is it possible that my inflammation may have moved from my colon into my upper GI and been crohns all along...maybe upper terminal ileum or elsewhere in the small intestine. I have not had a CT scan nor a pill cam but am considering asking my GI for such.

My questions is to garner any evidence on here that people with similar vague symptoms to myself subsequently discovered that the inflammation was actually lurking hidden in the small intestine all along and missed on scope and blood tests. Is this possible? Did it happen to you? And if so how did you find out?

With thanks,

Kevin

It's absolutely not uncommon for Crohn's to be misdiagnosed as UC. I was on imuran and mesalamnie for about 18 months and had most of what you're describing, including clean scopes. Then one day I woke up with a large lump that was an abscess that became a fistula, and my diagnosis switched to Crohn's. Going on Remicade was a lifesaver.

Scopes really don't show the full picture, unfortunately. And lab work can easily "hide" if that makes sense.

A pill cam is one option, as is the CT. Is your GI taking you seriously about how you're feeling? I would definitely ask for the CT (as it's a little easier approved by insurance). But if your GI blows you off, you need to find a new GI who's willing to accept it's not all diarrhea.