Fibrostenosing and internal penetrating disease

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Adria132004
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 10/31/2007 7:51 AM (GMT -7)   
Hi everyone, please forgive me if this is a newbie question, but this terminology is all very new to me. Got my detailed Prometheus results back yesterday and all CD markers were well above reference values. Anti-CBir1, in particular, was off the charts at >150.0 (reference value <21.0). According to the prognostic information, this is associated with fibrostenosing and internal penetrating disease. Could someone define what these terms mean?

The report also states that ASCA values above reference are associated with aggressive disease phenotype. But here's the weird thing. I have no symptoms (nor have I ever had any) other than severe anal fissures, so this diagnosis came as a complete surprise to me. Hard to imagine aggressive disease with so few symptoms. I don't know what to think. I go for a small bowel series tomorrow, so I guess I will know more after that.

Just here looking for answers as to what I can expect down the road. For now the label of Crohn's just feels like a technicality -- more of a nuisance for the testing I'll have to undergo to determine if there's any active but asymptomatic inflammation.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 10/31/2007 8:53 AM (GMT -7)   
These are different classifications of the disease. Although we have Crohn's disease, it acts differently in different people. Fibrostenosing disease is stricturing disease, it means that the disease progression generally creates strictures or narrowing in the bowel (stenosis). Penetrating disease indicates that the disease progression will have fistula involvment, abnormal connections of the bowel to other organs or skin generally. Also, with new research, scientists are starting to identify different disease type/classifications with different genes and therefore different therapies. Hopefully that wasn't to confusing......

Glad your not currently having any symptoms and welcome to the board!


 
 


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/31/2007 6:19 PM (GMT -7)   
I also had the same results on my prometheus test. I was diagnosed with crohns and thought that was enough then to read the fine print and find out about the CBIR1 test. Mine too was high! I have had crohns still flaring since August but do not have strictures or fistulas yet. I am hoping and praying I neve rhave them...

Chris

Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 11/1/2007 7:00 AM (GMT -7)   
My prometheus test showed elevated CBir1 also. 73.6

I do have fisulas and strictures. But no small bowel involvement so far. I've been in remission since last year but all my diseased colon was removed. I still have bouts of "d" and fatigue and I'm hoping that my crohn's stays quiet. I really don't want to deal with strictures and fistulas any time soon.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

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