Confused

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I’ve had a clear pill cam and colonoscopy, but o have high calprotectin and severe right abdomen pain and black stools. Any ideas ? Thanks 

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  • Posted

    Hi Chantal, I've been in very similar situation. Good to know I'm not alone!

    I've had many colonoscopies, endoscopies and pill cams. Ulceration was seen a while back which gave me a diagnosis of Crohns but i've not been on any management drugs.

    My calpro inflammation levels are now higher (consistently 600+ which I think is limit of the specific test they use). The most recent colonoscopy and pill cam only showed old healed ulceration that wouldn't be causing a problem. The consultant was convinced they'd see something with calpro levels where they are.

    I have joint pain, muscle pain, headaches, fatigue is a real problem, brain fog and gut pain. After many extra tests and conversations they've decided to try me on prednisolone for 2 months and if that brings inflammation down to consider longer term meds.

    I don't mean to talk loads but thought the background may be of help to you.

    What are your calpro levels and have re tests shown continued elevation?

    Dark stools could be blood from higher in the bowels but it could simply be iron if you're taking supplements or eating a high iron diet?

    Matt

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    • Posted

      Hi Thankyou for the reply. They’ve found nothing . Only bleeding in the small intestine. My calprotectin was 400 and the GI and GP both said it’s high. I’m not on iron atm . 

      I could cry because I’m so poorly. What’s your plan of action ? 

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    • Posted

      Bleeding in small intestine is still a clear sign something's not happy. I gave you an example of my symptoms and calpro level because there got to a point where they didn't think it was Crohn's and I was running out of options - then in there weekly meeting they decided somethings not happy and to see if the steroids bring down the inflammation - I'm only 10 days into prednisolone but I think starting to feel the benefits.

      Do they have further tests or a plan? 

      I'm really sorry to hear it's so tough, it really is a bad place to be and hard for anyone else to understand just all consuming and detrimental to your life it can be. You'll get there but it can take time and a lot of perseverance. Don't let them off the hook and you can always request a second opinion once they've reached a conclusion. My first GI was rubbish and I transferred to the head of Digestive Diseases - much better. 

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    • Posted

      Hi, I’ve been in steroids and my tummy feels so much better. I’m regular as before I would do a week or so without a BM . I’m so down atm as I feel like I’m at a dead end and no one cares. Can’t get hold of anyone , I get ignored, no one returns my calls. It’s terrible.

      Thankyou for your support  

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