Normal calprotectin, still have symptoms

[Vikingsnail]

Hi everyone. I was diagnosed with ulcerative colitis (just in the final part of my colon so proctitis), through colonoscopy with biopsies. I also had a calprotectin test last year which came back at around 840.

I've been having symptoms for months... Blood, mucus, diarrhoea, urgency, back and tummy ache. Have tried mesalazine suppositories, prednisolone suppositories, steroid enema, steroid foam, mesalazine granules and oral prednisolone with no luck. Had another calprotectin test last week which came back normal! My ibd nurse is very confused. Any ideas? Thank you!

 

[ronroush7]

I am not sure. I am going to tag Cross stitch gal.

 

[Lady Organic]

Calpro is not a 100% accurate test to diagnose disease activity, there is no confusion! The clinical symptoms you describe and experience have 100% more value than a calpro result. Colonoscopy is the most reliable test for proctitis, not calprotectine. Calprotectine is a complementary test, just like the blood tests, and they are not always accurate. The nurse should refer you asap to the gastroenterologist for colonoscopy to monitor disease activity and to get a better treatment. Did she put you in contact with the GI? I am really hoping she did.
You have tried the first steps of medications and will most likely need to upgrade to another category.
Wishing you well and let us know how it goes

 

[Vikingsnail]

Thank you! Yes I have an appointment with the gi though not till the end of next month unfortunately x

 

[ronroush7]

Thank you! Yes I have an appointment with the gi though not till the end of next month unfortunately x

Maybe you could phone them and ask if there are any cancellations if they could write you in.

 

[Lady Organic]

I am sorry you have to wait this long. if you see your symptoms really increasing and getting worst, do not waist time and push to see the GI faster. There is no point in suffering and letting disease progress, drs know that. Wishing you well.

 

[Vikingsnail]

Unfortunately I've been hassling the ibd team at the hospital for ages! My appointment was bought forward to February from April but I fear it will be moved back again... They booked me a short follow up appointment but it's a doctor I've not seen before so the nurse said hrs likely to move it to a longer one!
I am so grateful for the NHS, but it does have its drawbacks!

Today I passed a jelly like, bright red blood clot. About the size of a 50 pence piece. I guess as it's bright red and not dark that's good.. But wondering in I should see out of hours doctors...

 

[ronroush7]

Yes.

 

[Lady Organic]

if this persists, you could go the the emergency of your hospital and ask to see a GI because your situation is deteriorating. maybe this could work. Its really unfortunate the IBD team cannot respond rapidly to their patients having active flare. maybe the emergency can help you better get this flare under control with proper medication.

 

[Vikingsnail]

Well, it didn't continue so I have just contacted the ibd team today. Hopefully they will get back to me!

In their defence, the nurses have been really good. It's just the doctors that aren't being so great, it seems nearly impossible to get a consultation with a gi!