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[tracyandkevinp]

Hello and almost merry Christmas to my fellow IBD'ers.

I am new to this site and forums, so please forgive me if the format isn't the norm.

I had undiagnosed crohns from the age of approx 17 years of age through to approximately age 32 when finally, a wonderful consultant diagnosed the disease.

To date I have had 17 surgeries for peri-anal fistula, colostomy/reversal and resection, not to mention the wonderul amount of colonoscopies.

I write today in hope of gaining some advice. I had a routine appointment in July of this year with my Consultant. I explained to him that 100mg of Azathioprine taking once daily on a morning was causing me to tremor. He advised me to reduce the dose to 50mg based on my condition having been stable for minimum of 4 years. Within 2 weeks of reducing the dose I was admitted to hospital in extreme pain and diagnosed from CT scan as having Crohns Flare of terminal ileum and narrowing. Metronidazole, Methyl Pred settled symptoms and discharged 10 days later with 40mg reducing dosage weekly. The prednisolone has ended and symptoms recurred. Consultant did colonoscopy to fund ulceration and the narrowing as mentioned previously. Restarted on Prednisolone at 40mg an advised to split azathioprine to 50mg am and 50mg evening. Again the pred came to an end and symtpoms all back again. Each time CRPs negatve but feacal calprotectin shows significant inflamation. Consultant due to see me in Jan to discuss Humira but why on earth is my CRP not raised? Any guidance is greatly appreciated. :yfaint:

 

[Jmrogers4]

My son is the same way. Bloods are normal but fecal calprotectin raised. He didn't give us an explanation as I assume he didn't have one, just said well I guess we can not count on blood labs to give us an accurate picture. MRI from last friday confirmed inflammation and swelling in small intestine with narrowing at TI.
We plan to start remicade as soon as we get insurance approval.

 

[tracyandkevinp]

Thanks for your reply. Bizzare isn't it. My consultant says " it is rare for CRP's not to be raised with active proven flare, but it can happen". My CRP's have never been raised, which I don't understand even though I have all the signs, symptoms, and diagnosis

 

[Clash]

My son is the same way his CRP is never an accurate indicator to the amount of active disease when in a flare. I'm not saying his hasn't been raised but at one time it was just a twitch above normal, GI said could be anything and not indicative of a flare I asked for a fecal calprotectin and it came back 1700.

But when it is just simmering inflammation, fecal calprotectin level of 300 his CRP is low normal.

 

[tracyandkevinp]

So to update. I met with my consultant on monday and he went through the results from the faecal calprotectin test and bloods. He advised my results were the highest he had ever seen, yet my CRPs were only marginally raised. He said I needed to be on Humira as as matter of some urgency as he is pretty certain the Azathioprine I have taken for the past 5 years has failed, and promptly sent me (with paperwork in hand) to have chest xray and all other relevant bloods taken.

I know he went through everything, but I can't help feeling bewildered at the prospect of self injecting biological medicine and am wondering still about the CRPs. Totally exhausted from this horrid disease.