So im in remission?

[cosmic dave]

So I've had an email from my ibd nurse saying my crp markers are 2.7 and my crohns is in remission. If im in remission why am I bleeding when I go to the toilet and still getting stomach pain? Ive also got a constant dull ache in what I suspect is my bladder area

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[SarahD]

What is it with IBD specialists thinking that a normal CRP = remission?! This is a pet-hate of mine.

My CRP is nearly always normal and is often <1 despite the fact that I'm in a really bad flare. I met a new consultant a few months ago who thought I didn't have any inflammation (based on my CRP result) until he scoped me and saw all the ulcers and redness in my TI, then afterwards he told me that there is a subset of patients who will have a normal CRP value despite having extensive inflammation. You can go blue in the face telling them that you're flaring but they just don't listen because the CRP result is normal.

Did you tell the nurse that you're still getting symptoms? You could request a Calprotectin test, or ask if they tested your ESR levels. I hope you can get them to listen to you, I feel your frustration!

 

[cosmic dave]

Tbh I feel a lot better but not 100% maybe I will never feel 100% again it would just be good if I was told what I should expect. If this is a good as it gets after 25 years of crohns then so be it. JUST TALK TO ME :banghead:

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[Clash]

There are different states of remission. Some doctors speak of remission when most of the symptoms have stopped and lab work is normal, that would be clinical remission and it used to be the therapeutic goal in treatment.

Now deep stable remission with full mucosal healing is usually the goal, that is where lab work is good, symptoms have abated and inflammation isn't seen at the endoscopic or histological level.

If you are still bleeding and having symptoms then those need to be investigated. A fecal calprotectin stool test can show if there is inflammation still present in your GI tract. It might be possible for you to ask for this test to monitor your inflammation and give the GI a clearer picture of what is going on inside.

 

[cosmic dave]

Cant see the NHS funding that

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[Clash]

Are you speaking about the Fecal Calprotectin? I'm not sure about them funding it either, I know Niks is from the UK and her daughter had one but she may have paid out of pocket. I think it runs about 140.00$ over here in the US but a lot less in Australia, might be something to look into.

 

[Clash]

Found a link about a recent decision on FC tests by NICE in the UK

http://guidance.nice.org.uk/DT/12/Consultation/DraftGuidance

 

[SarahD]

I've had the fecal Calprotectin test funded by the NHS twice now. Not all centres offer it, but it's got to be worth asking for.