Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Crohn's and a Blood Clotting Disorder


Fri, February 06, 2009 7:07 PM

HI everyone!  I am a 28 year old female and had Crohn's since I was 9 years old.  Well a couple of years ago I ended up getting 4 blood clots in my lungs.  Two clots were centmeters from my heart and almost killed me.  I took blood thinners for 6 months and then they took me off and said it was just a fluke.  Well I was hospitalized Jan.1 2009 and had another blood clot in my lung and now the doctors are saying I have a blood clotting disorder that goes along with lupus and autoimmune disease. Now I back on blood thinners for life. Anyone else have this problem.  Any info would help

Thanks

FPO clparrott80
Joined Nov 17, 2008

Mon, February 09, 2009 1:00 AM

 Reply posted for clparrott80.

Thanks everyone!  I am so glad to have had someone to discuss this with.  Thank you!!!!

FPO clparrott80
Joined Nov 17, 2008

Sat, February 14, 2009 8:55 AM

Crohn's and a Blood Clotting DisorderThanks everyone!  I am so glad to have had someone to discuss this with.  Thank you!!!!

FPO clparrott80
Joined Nov 17, 2008

Sat, February 07, 2009 7:53 PM

 Reply posted for clparrott80.

hi, I'm a female crohn's pt. I had DVTs in my right leg 15 yrs. ago and a stroke at age 37. The first thing all of the doctors told me was do NOT take any kind of birth control as Crohn's causes the blood to become sticky when flaring due to inflammation in the body. When you add a hormone, it increases the formation of clots faster. Luckily, I wasn't taking anything b/c my GI told me a long time ago how dangerous the pill, patch, ring, etc. were. The only safe thing to use is NFP b/c it doesn't interfere w/treatments, is totally safe, & it can be used to determine if I am in a hormonal or actual flare.  Another good thing about it is that it's 100% effective in avoiding conception when used properly. 


Anyway, they ran more tests and found out I have a blood clotting disorder, MTHFR genetic mutation, where my body just throws clots at any time.  So, I am on Lovenox shots daily for the rest of my life.

I am so grateful that I survived seeing as the clot in my brain was 12" long and I had a hemorrhage as well.  Thank God I knew that hormones were dangerous as well and it was not the cause of my past clots.   

FPO boydsbearfan
Joined Apr 8, 2008

Sat, February 07, 2009 1:00 AM

 Reply posted for clparrott80.

I have Crohn's and Factor V mutation.  The Factor V mutation means that I am 2-5 times more likely to develop blood clots than a normal person.  I don't think they are related though.  Factor V runs in my family, but I am the only person in my family that has Crohn's. 

FPO lizchurch03
Joined Oct 18, 2008

Sat, February 07, 2009 1:57 AM

 Reply posted for clparrott80.

You arent alone.  I have 3 different clotting disorders that are aggravated by my crohns; antiphospholipid antibodies, vitamin K sensativity and protein S deficiency.   Like you Ive had several PEs as well as multiple DVTs.  If you are having a hard time getting and staying regulated on Coumadin and if you dont mind giving yourself injections, talk to your docs about Lovenox and Arixtra.  Coumadin is a broad acting anticoagulant that inhibits vitamin K-dependent coagulation factors II, VII, IX, X and proteins C and SLovenox is a low molecular weight Heparin that binds to ATIII (anti-thrombin 3) and inhibits thrombin and factor Xa, Arixtra targets only factor Xa.  I know this because Ive been on all of them and clotted on all of them.  Knowing my meds and how they work is something I make a point of so I can talk to docs in their language and so I know what the drug is supposed to do.  Lovenox may be a 2x daily shot, Arixtra is a once daily shot.

The nice thing about Arixtra is that it doesnt require constant, i.e. weekly, blood work and adjustment.  I have an activated factor X test about every quarter!

Obviously, IANAD (I Am Not a Doctor) and YMMV (Your Mileage May Vary).  These are just my experiences over the past decade +.

But as I said at the top of the post, you are not alone in this.

FPO eahlmunde
Joined Feb 5, 2009

Related Topics

IBD and trauma
Author Image Janeliza
Joined Apr 13, 2022

Hi all! I've had Crohn's since 2014 with m....

read more

Life Insurance?
Author Image Aperson1
Joined Dec 2, 2022

40 y.o. male looking to get life insurance.  ....

read more

IBD and exercise/sport
Author Image JS25
Joined Aug 14, 2023

This is my first post. I am 28 and I was diagnosed....

read more