Anyones test results conflict with how they feel? Worried

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lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/5/2009 12:18 PM (GMT -7)   
So after being really seriously ill with my Crohn's in December (at which point my CRP went up to 163, 2nd highest it had ever been for me) I've been having regular bloodtests to keep an eye on things. The doctor phoned me last week and informed me my test had CRP of 50 and was worried until I assured I felt OK and had no symptoms out of the ordinary and that I'd have another 7 days later to make sure things really were OK  and to rule out it being a fluke result.
So I had another test done yesterday and get a really freaked out doctor phoning me saying my CRP was now over 120 and that I need to get on to my specialist right away, and usual procedure list of emergency symptoms to look out for and demanding that the slightest change I get myself down there straight away (not to worry me or anything lol)
 
My CRP has always been really good at correlating directly with my disease activity, and my doctors have said that although a lot of it could be disregarded if the patient is OK generally theres no smoke without fire. Now the thing is I'm not feeling that bad at all, I'm on of those crohnies who always has loose stool even when classed as in remission (controlled for 6 years with codeine) and I do get some cramps just before I need BM. Before when I had a flare and my CRP was about 70-80 it really really affected me I was quite badly ill and my last flare where it went up to 163 I was in screaming agony so I cannot understand what is going on. 
 
I was just wondering if anyone else had ever had high CRP/signs of illness in blood test but no signs of illness and it turned out OK or did it always end in a bad flare??
 
I'm terrified that even though I feel OK that I'm a ticking bomb and am going to get ill again, I really cannot bear the idea, I left a message with my GI's IBD nurse at the hospital so hopefully I'll hear from her soon, in the meantime any words or advice would be great thankyou.
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/5/2009 12:40 PM (GMT -7)   
That doesn't mean the inflammation necessarily has to be Crohns. Are your joints bothering you at all? Sometimes when your joints are acting up it can show up as inflammation on tests. (i.e. CRP/Sed Rate). Or any other inflammation can register on these tests.

BUT..........I once had a Rheumatologist tell me many times the joints will act up right before a flare. I am glad you called your GI, hopefully they will have some words of wisdom for you.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/5/2009 12:41 PM (GMT -7)   
Oh and I have been really sick and my blood tests come back normal:( Grrrrr!!!!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/6/2009 7:37 AM (GMT -7)   

Ahh I bet thats more frustrating!!

My joints are all fine too at the moment which is pretty amazing considering the winter we're having here - usually my joints stiffen and swell in cold conditions but then again I have really been looking after myself.

Had a call from the IBD nurse, she basically said it sounded like I need help regardless and then mentioned that usually with acute flare ups of Crohn's, like what I had over Christmas, they treat it with one infliximab and then another 2 weeks later to really knock it out....all I'm thinking is why on earth did they not mention that or do that before! I'm shocked that she made out like that was standard procedure and its the first I'm hearing of it, its now been over 4 weeks since the one infusion I had then. I know I'm a slightly different case as I'm an episodic infliximab user but still I'm a little peeved it wasn't put forward to me especially if it is what they usually do for patients. I'll be so upset if it turns out my body's needlessly getting damaged over something so simple as not being given an extra infusion like others in my position were. She's calling back once she's spoken to my GI after this afternoons clinic, here's hoping we can figure out a way to knock this on the head before this turns into anything nasty.


 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/6/2009 7:52 AM (GMT -7)   
Got all my fingers and toes and anything else I can possibly cross crossed that they nip this in the bud before things get out of control.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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