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Crohn's Disease Forum » Tests for IBD » Evaluating remission?


07-24-2014, 02:59 PM   #1
InkyStinky
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Evaluating remission?

Hi all! I've been gone from the forum too long - lovin' all the changes with the fabulous Wiki and Support Groups!

I've been back on 6MP since '09. Gut-symptom wise I'm "normal". My current GI isn't proactive about evaluating remission. I'm due to get my 6mth labs (CBC and Liver Function Panel - had trouble in the past with liver levels), and was wondering what other tests I should ask for.

In the past my sed rate and wbc have been indicative of active inflammation. So I was going to ask for an ESR at least. But from reading around the forum it sounds like CRP and Fecal Calprotectin are also touchstone measures for evaluating remission? Is Fecal Calprotectin now a standard test? I don't remember my GI ever mentioning it (though I'm in a very medically isolated part of the US).

I guess what I'm really asking is: Am I reasonable in requesting that my GI to order all three - the ESR, CRP, and Fecal Calprotectin?

My GI's office is lax (I have had to call to find out the results of my routine labs), and it kinda makes me feel like I'm "going overboard" when I ask for things....

Thanks!
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Sabrina
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

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07-24-2014, 03:05 PM   #2
If*
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Doesn't sound like too much, what about your b12 and calcium?
Hope today finds you doing well.
07-24-2014, 03:12 PM   #3
Momtotwo
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I don't think it is going overboard. Our pediatric GI uses the fecal calprotectin as part of the diagnostic work-up but not part of the monitoring of IBD. But other doctors seem to use it to evaluate treatment response, and I haven't found a reason not to do that. Our insurance rejected the initial test and it's over $300. Something to look into if you mind the cost.
07-24-2014, 04:10 PM   #4
Patricia56
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A lot of insurance companies will not yet cover FCP so you may want to check that out before asking. Our ped GI does not use that test, he feels it is not very reliable. But lots of others do use it.

ESR and CrP are both measures of inflammation but they measure different things. The CrP measures acute inflammation levels in the past 24 hours. ESR can be elevated for weeks following an acute injury or bout of inflammation but sometimes one will be up and not the other. My son had elevated ESR for a couple years but his CrP was never up despite active CD. So it's good to get both I think. They are screening tools.

If it has been 8 years or longer since your last scope or if the scope was done when you were flaring and you haven't had a scope in 8 years you should get a survey scope done to check for cancer.

You should also be getting DXA scans on a regular (annual is best) basis to check your bone health. Many people with CD have osteopenia and don't know it. This is treatable but only if you know about it.

And you should never feel uncomfortable about advocating for yourself with your GI. It is YOUR health and body after all. You will be the one to pay the price if regular screening isn't done.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-24-2014, 07:10 PM   #5
InkyStinky
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Thanks, folks!

b12 and calcium?
I should get my B12 checked - it's been checked sporadically over the years (always normal) but it has been a few years - and I forgot this really should be kept up on whist on 6MP.

Our insurance rejected the initial test and it's over $300. Something to look into if you mind the cost.
Great heads up - I'll definitely have to check with my insurance!

It is YOUR health and body after all. You will be the one to pay the price if regular screening isn't done.
Right on! Last colonoscopy was '11 (no cancer or pre-cancer), and bone density scan (normal) the same year if I remember correctly off the top of my head.

I really appreciate the support, everyone! Fatigue and "brain-fog" are my two persistent struggles, and before I invest a bunch of energy into dealing with my GI's office I wanted to be sure I was asking for reasonable things!

My wonderful husband is bending over backwards trying to relocate us to an area of the country with access to better healthcare, and I am very hopeful we can move before the Summer's out. But as I have to have labs done in the next few weeks anyway, I thought I'd ask to tack some more things on - so I can have a better understanding of how I'm actually doing.
08-02-2014, 11:04 PM   #6
InkyStinky
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Tests scheduled in a week and a half - I have to have an office visit to get my 6MP refilled, and as the clinic is 1+hrs away I'm going to do the labs at the same time.

Going to have: CBC, Liver Panel, ESR, CRP, B12&Folic Acid. Decided not to mess with insurance about Fecal Cal as we will hopefully be moving very soon, and I'm really looking forward to finding an up-to-date GI!
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