I've had 2 clots due to the crohn's - they happened while I was flared up and I have no other genetic risks factors. Luckily never of them broke off. Were you guys flared up when you had clots or were they totally random? because that would be really scary if we were at a higher risk even when in remission? I was under the impression that the risk was from dehydration and active inflammation.
When I was in the hospital with the first clot my doctor showed me some interesting studies that low molecular weight heparin (a blood thinner) can actually improve crohn's disease in some people. I know it seems totally counter-intuitive to give someone whose bleeding blood thinners and some people in the study did have worsening bleeding and no improvement but it if works then you can get 2 birds for one stone. My doctor wanted me to try it but its 2 shots a day and I was like um no, thats ridiculous.
Never got an official clot, but was treated as preventative while flaring.
On your 2nd thing about
the Heparin. That is VERY interesting as I felt GREAT pregnant. No idea if it was the pregnancy, the Heparin, the asprin, or the IVIg.... your guess is as good as mine. We all vote the combination! But, yes, 2 shots a day for Heparin, and they leave some pretty nice bruises! I did 2 a day everyday for nearly 28 weeks. I was SO glad to be done with those shots.. SO glad!