For those of us who's SED rates are always normal

[willpwuk]

Hi everyone hope you're well.

I'm meeting with a new GI on the 24th, and i need a bit of help with something.

Basically in my case my SED rates are always almost normal. As in <5 even when i'm in a horrible flare. After discussing with the GI about this he did say that SED rates a lot of the time only show inflammation in about 40% of CD patients, and because my disease has come back higher up in my small bowel it wouldn't be a surprise if my Calprotectin was normal as well (Still waiting for the result back though.)

Anyway my issue is he's moving to another hospital, and i've ended up with a new GI. I'm sure my previous one would have left notes for him but just in case how do you manage to convince you're GI/IBD nurse you're in a flare? Have they learnt to trust you and go by your symptoms or do they make you go for more extensive stuff like a CT/MRI etc....

After being labeled with Having IBS for the past 4 years before being diagnosed with Crohn's i don't want to have to go back to 'No you're fine, your crohn's is in remission, this is just ibs.' As the symptoms are pretty much exactly the same as to what i experience with a flare....only higher up lol

 

[Guerrero]

CRP or calprotectin are more likely to be higher normal range than sed rate in case of flare. That's the case for me. Doctor usually trust more ct/mri than symptoms...

 

[Jabee]

Hmmm. So many doctors like to run their own tests and put their own “spin” on treating patients. I got a second opinion after my last flare and without doing any tests he was convinced both the celiac and crohn’s diagnoses were wrong. I had just gotten out of the hospital with a flare and he had all the notes from that and the previous tests my GI had run as well as how he was treating me, and basically threw them in the trash because I have an unusual presentation (small bowel crohn’s which has affected my duodenum as well as jenunum and ileum). Fortunately I didn’t have to see him again and though my regular GI has now left the area he handed me off to one of his partners.

Since you just had a resection I figure most of the conversation will be about how you are and making sure you start Humira as soon as you can (after the flu season peaks?). It takes time to create a good doctor-patient relationship. It can be daunting thinking of starting a new one, especially since you were “diagnosed” with IBS for so long. Hopefully this new GI won’t want to investigate the crohn’s all over again but will follow your previous GI’s notes. I would actually bring to his or her attention that your blood work isn’t a good indicator of your disease activity. People often don’t fit the traditional mold, but some doctors aren’t comfortable with grey areas. Good luck and let us know how the appointment goes.