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biopsy normal? - update

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Crohn's Disease
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Posted 8/24/2017 1:34 PM (GMT 0)
I went docs a couple months back and bloods were normal. Calprotectin was 317 so was sent for the camera procedure. Doc took biopsies and gave me a copy of the letter with pictures. Said on first look it looks like UC but upon further inspection looks like crohns. Ulcers present and red.

Said consultant is now away on annual leave and my own GP rang today - biopsies are normal but she can't get access to any other information. I asked if this means I don't have IBD and she said no, she really doesn't know. I have to wait until consultant is back and gives me an appointment (could take weeks).

Anyone else with similar experience? Anyone else had negative biopsies but still diagnosed?

Post Edited (cookiecrumble) : 9/15/2017 6:53:37 AM (GMT-6)

Posted 8/25/2017 3:21 AM (GMT 0)
Honestly it sounds like your GP doesn't know enough about IBD to really work with you on it - this is not uncommon. You really need a specialist.

In the meantime I'd ask for copies of your biopsy/pathology results and copies of any imaging reports to be mailed to you so you can read them yourself.
Posted 8/25/2017 8:39 PM (GMT 0)
I've heard of people with negative biopsies getting an IBD diagnosis, but I think there has to be some other obvious signs that it is IBD - visual appearance, symptoms, etc. I had negative biopsies come back from my colon after it was removed, but as I don't know what the preceding 13 years of biopsies showed, I dunno how helpful that is!

At least your GP was honest in admitting she didn't know, but keep on pushing for an appointment with a consultant. And ask for a copy of the colonoscopy report to be sent to you.
Posted 9/15/2017 12:53 PM (GMT 0)
Had my hospital appointment today after having my biopsy in early August. Biopsy results were normal which I found out anyway. Dr says yes there is inflammation and ulcers etc but biopsies were normal so he won't give me a definitive diagnoses until he's checked me for bugs and celiac (pretty sure I was checked for these before my biopsy and it was all good). I'm just so confused, thought I would have a definite answer one way or the other today? I don't even know if, if the tests come back clear, it would be crohn's or UC.

I've been feeling worse and worse recently. I'm so lethargic and weak. Even my joints are hurting. Dr has prescribed some foam enemas and wait for results from GP.Anyone been in a similar situation? Just feel in limbo sad
Posted 9/15/2017 3:20 PM (GMT 0)
Just go along with the checks, even if they've been done before - it's good to be thorough anyway. But yeah, sometimes it's impossible to nail UC or Crohn's down, at least at the beginning (sometimes the distinction becomes clearer with time). I suspect if all the checks come back clear, you'll get your IBD diagnosis.
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