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Confusing variables (advice requested)

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Ulcerative Colitis
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Posted 6/26/2015 3:58 PM (GMT -5)
I got my bloodwork back today and my CRP is only 1.8, down from 70 at the beginning of April! Woot woot! So, according to my lab work there is no inflammation, or at least nothing major. This means I'm technically not in flare anymore.

My iron is extremely low though, which may account for my chronic fatigue.

What I'm wondering is... if the lab work registers no inflammation, then why do I still have symptoms like 10 toilet visits a day, and pain? Am I dealing with the leftover damage of the flare?

At least I know my life is not in danger anymore. I just have to focus on fixing my malnourishment and gaining weight. The symptoms though... they continue to wreck my life. Can't really leave the house too much and if I do, I need to make sure there will be facilities nearby.

Please help me understand this?
Posted 6/26/2015 4:21 PM (GMT -5)
You're still tapering pred?

10 toilet visits with what "substance". Urgency as well?
q
Posted 6/26/2015 4:25 PM (GMT -5)
Yes, pred is at 20mg and I'm staying there until my next MD appointment so I can get some advice on that.

10 toilet visits a day with semi-formed stool, no blood or mucous, no undigested food. But it hurts like hell as it transits my descending colon and rectum. Urgency happens once the stool reaches the rectum. If I clench really hard and do deep breathing, I can hold off, but it's quite painful.
Posted 6/26/2015 4:25 PM (GMT -5)
When was the last time you were scoped? I don't know if blood test alone can verify for sure there is no inflammation, but a recent scope along with blood test would.

All I can say based on my experience was when my crohn's colitis went into remission and I still didn't feel normal that's when my GI reminded me of his IBS suspicion around 14 yrs ago and that's what we've chalked my issues up to being a result of since my scope showed a very healthy colon and rectum (though a bit of rectal scaring) as well as the rest of my GI tract showing no signs of inflammation.

What does your doc have to say about your symptoms that you're still having (although your blood shows things are relatively good)?
Posted 6/26/2015 4:26 PM (GMT -5)
I hate to burst your bubble but CRP levels are not the end all to diagnosing inflammation. You still have inflammtion. Here in the US most GI's don't even test CRP levels. Mine never has. I had my regular doc do it once. Symptoms are symptoms, no matter what your CRP levels are.
Posted 6/26/2015 4:29 PM (GMT -5)
^ Ok, good to know. No bubble is being burst because I wasn't sure what it meant in the first place.

The CRP mattered in my case because I had fulminating colitis with the threat of death. It was pretty much as bad as it could possibly be at the outset, which is why they pressed for surgery so much. With my CRP as low as it is now, I'm at least not in danger of life threatening complications at this time.

I do still feel there is inflammation. It's just that in my doctor's e-mail she wrote, "Your CRP is 1.8, so the inflammation is gone!" That's what I'm trying to clarify here.

It's still a major milestone though and I'm happy to get this news :)
Posted 6/26/2015 4:59 PM (GMT -5)
Crp stands for c reactive protein and it has something to do with the immune a response to inflammation.
It is most definitely not the end point to determine inflammation
However it is showing you have improvement but there are other tests that will determine inflammation. But if you are still systematic than you probably still have inflammation.
Posted 6/26/2015 5:24 PM (GMT -5)
some people can still be flaring but have normal inflammation markers. that's why my doctor goes by symptoms because that is what you have to deal with.
Posted 6/26/2015 6:28 PM (GMT -5)
Just out of interest, does your paperwork show measurements? If so, what are the units of measurements for your CRP? Cheers.

Also, if the CRP was lowered by the steroids and being maintained by steroids, then a low CRP is literally not worth the paper it's written on. I'm disappointed in your GI that she didn't know that - but she is far from alone. I've had nurses and doctors tell me similarly wrong things.

I don't like saying this, dude, but I strongly suspect you still have active inflammation and the Pred is merely a holding ground. But to really find out, you need another scope.
Posted 6/27/2015 9:15 AM (GMT -5)
Never heard of fulminating colitis before so did some reading and learned something new. I see now why surgery was mentioned as everything I've read suggests they only give you 7 days to respond to infliximab before surgery. So scrap anything I've suggested previously about apparent medical rashness!

As others have indicated, CRP (and ESR) are only part of the picture. How you are is more important. Technically I believe that any CRP over (the surprisingly low figure of) 45 mg/L indicates possible surgery need but then if docs adhered to that we'd all probably be under the knife! You'd need far more than one marker to convince me. Surgery scares the hell out of me.
Posted 6/27/2015 12:34 PM (GMT -5)
my doc never used CRP to measure flares, but for more general in conjunction with other liver enzyme readings.

You're having rectal symptoms, and since inflammation happens in increments, I'd say you're still flaring with limited in the rectum inflammation.

Request to get on rectal meds as well.

At this point consider a steroid since 5ASA "failed"...

q
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