Crohn's with Von Willibrands (blood clotting disorder) -- Any others have this combo?

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Dietdad
Regular Member


Date Joined Aug 2005
Total Posts : 122
   Posted 10/14/2007 11:31 AM (GMT -7)   
Hi,
 
It has been quite a while since I posted on behalf of my daughter. She (now 17) was diagnosed with Crohn's at age 14 after many years of problems.  To make a long story short, we opted to pursue the Specific Carbohydrate Diet (SCD) instead of drugs or surgery (she wound up in the hospital shortly after her diagnosis with a large abscess).  Since 2004, she has stayed on the SCD and has had no Crohn's problems which has enabled her to function normally at school and other activities.  She has taken no drugs for Crohn's since 2005.
 
In the Spring of this year, she developed a problem with having periods that never stopped.  Subsequently, she was diagnosed with a blood disorder named Von Willibrands.  In essence she has low levels of this blood clotting factor.  She is now taking replacement factors (pills) to help control the problem.  However, in researching this issue, I came across several studies linking Crohn's with blood disorders.  We are not yet "out of the woods" on controlling this particular problem.
 
Any additional insight into this pairing of problems would be welcome.
 
Best regards,
 
Diet Dad
 
 

Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 10/14/2007 3:27 PM (GMT -7)   
I have Factor 11 deficiency which is also a blood clotting disorder, similar to but not identical to what your daughter has. It was diagnosed when I was trying to get pregnant 15 years ago and kept miscarrying. In checking out my family history, there was never any formal diagnosis, but my aunt remembers that both my paternal grandfather and great grandfather, as well as my father, bled a lot when they cut themselves. I am being closely monitorred by my hematologist who is not aware of any connection between CD and blood clotting disorders. The biologicals (Humira and Remicade) do carry a higher risk of developing certain types of blood clotting disorders, (I just started Humira after having a lupus-like syndrome reaction to Remicade) which is why my hematologist is monitoring me.

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 10/14/2007 3:37 PM (GMT -7)   
I do not have this combo but did you know doberman pinchers are prone to Von Willibrans therefore at any good vet office they should be tested prior to any surgery or dental procedures...they only need to be tested once tho cuz once you know someone or some animal has it they will alwasy have it just make sure all docs in the future know about it
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 10/15/2007 12:57 AM (GMT -7)   
hey diet dad. my mom has V.W... i have bleeding time thats on the border, but i have never been tested exclusivly for it. in my 14 surgeries, i have never had a bleeding problem so it did not matter to anyone. im sure her dr has explained whats neede with VW. if its bad enough she will have to get some factor8 before even having a tooth pulled etc... my mom has needed a hernia op for years but no one will do it even with the factor8 infusions. they claim to much risk for her. of course she is almost 80 as well. she has had it since your daughters age , but was never diagnosed till she was about 40 at stanford.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Dietdad
Regular Member


Date Joined Aug 2005
Total Posts : 122
   Posted 10/15/2007 8:43 AM (GMT -7)   
Hi Lisa, Dragonfly and Randy,
 
Thanks for your information.  I didn't know about the Doberman situation. Fortunately our dog is a Labrador. 
 
Well, its back to the medical professionals today for some further blood testing. The current theory is that there are other missing blood factors.
 
Thanks,
 
Diet Dad

Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/15/2007 11:59 AM (GMT -7)   
Hi Diet Dad,

I have Crohn's and was recently diagnosed with Factor VIII deficiency, probably VW...my hematologist has performed numerous tests on me, but it seems that the labs do not offer the one he needs to figure out exactly what my issue is. I have dealt with bleeding during flare ups for many years, and just had a hysterectomy because of constant bleeding. I also take Remicade, Lialda, prednisone, and entocort, so with all of those factors, I bruise very easily and am anemic. I don't know if there is a link between the two conditions - my GI tested me many times for bleeding disorders and never came up with anything, then after my fourth child was born and I started having gynocological issues, the gyn tested me and found the Factor VIII problem...the hematologist didn't believe it until he did the tests himself.

Good luck to your daughter, I hope she can continue to live medication-free!
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, and pain meds.


Dietdad
Regular Member


Date Joined Aug 2005
Total Posts : 122
   Posted 10/16/2007 8:09 PM (GMT -7)   
Shannon,
 
Thank you for your information.  Our hematogolist is similarly perplexed as to Von Willibrands and Factor XIII.  The jury is still out.  That said, my daughter is still having a tough time with periods that never end.  Hopefully, we can abate the bleeding and keep all of her body parts until some time into the future.
 
Best regards,
 
Diet Dad
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