Symptoms and calprotecin levels

Posted , 2 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi everyone,  hope your doing well.  I haven't yet been Diagnosed but had various tests done.  I first got sick a yr ago in December which I had severe bloody diarrhea and stomach cramps which lasted just over a week. My calprotecin levels were greater than 6000.  I had a colonoscopy 2 months later in February but by then I only had mild inflammation and they couldn't reach the small bowel.  I re did the calprotecin test on the 19th may which came back normal and had a small bowel MRI  a week later which came bk normal but if I do have crohns it could of been in remission. The colonoscopy  showed inflammation of the IC valve only and Biopsies were taken which showed acute ileitis.  Biopsies showed no evidence of IBD.  I was told its highly likely an infection.  I've only recently been seeing a nutrienist who gave me a more detailed stool test on on 8th august and an intestinal bacterial overgrowth test.  It came back that I have bacterial overgrowth and my calprotectin levels were 221.  I've just taken my calprotecin again with the GP on the 5th September and it came back normal.  I have appt to see gasroentologist but not until 3 months time but wats the point if I'm in remission?  My question is how do people get diagnosed with crohns if your in remission? My inflammation levels seem to be up and down.  They couldn't even diagnose me when I was very sick as I waited too long for the colonoscopy.  I don't know if this appt is just a waste of time.  

0 likes, 6 replies

Report

6 Replies

  • Posted

    Sorry one more thing is it possible they missed some thing in the colonoscopy. The consultant said if MRI comes bk normal I'll have another colonoscopy in case something was missed but I never did it. 

    Report
  • Posted

    I had normal mri & colonoscopy but FC was 600+ They did a small bowel capsule test & that showed inflammation in the small bowel (where the colonoscopy couldn’t reach).  When you’re in remission it’s trickier to confirm crohns but it should’ve been confirmed whilst active inflammation. I have crohns & had it for 30 years but spent 20 years In remission but officially still had crohns & always will have. I still kept my gastro appointments just for check ups so definitely keep your appointment smile 

    Report
    • Posted

      Hi hollaka. Thanks for your e-mail.  Did you have a small bowel MRI and is a small bowel capsule better?  Its great that you've been in remission for 20yrs and yes your rite its best to keep the appointments.  Thanks so much for advice xx

      Report
    • Posted

      Yes I had a small bowel mri & a contrast CT, all that showed was slight swelling. The capsule showed ulceration & severe scaring of my small bowel which wasn’t picked up on mri or ct... I flared up in December last year & have been really sick since. Now on Humira & been on steroids since April which has caused Cushing’s syndrome so battling that too now. Fun times 😕 

      Report
    • Posted

      Sorry to hear that.  I know a little about Cushing disease.  Hopefully once you've slowly come off the steroids you'd feel better in regards to your Cushing disease.  Can't believe you've been sick that long.  I've been seeing a nutritionist who told me to give up gluten and diary.  I know its helped some people and I've got to say the cramps are so much better.  I've noticed I get a few cramps by eating carbs too but I've cut down on that.  He avtualjy told be to do the scd diet but its too restricted but if your interested the website is called breaking the vicious cycle. Maybe this might help you?  Hopefully you'll get your crohns in remission soon.  

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up