Posted 9/6/2015 2:43 PM (GMT 0)
Ok to be as brief as possible just had my latest blood transfusion after yet another major bleed. I'm in a catch 22 - has anyone solved this dilemma.
Thanks to IBD I also suffer from leg and lung blood clots. To stop dying from these I need to take blood thinners. This is where the problem starts. IBD and hemmies cause bleeding - therefore the last thing you need are drugs that stop you clotting. Hence I am in this vicious circle of keep needing blood transfusions. Problem seems to be the once thinned my blood clots at only 20% normal rate (norm 80-100). Far too low.
I'm waiting to see a haematologist ... But has anyone been through this and found a way out of this vicious circle. I can't take warfarin or rivaroxaban anymore... And don't fancy a life of blood transfusions every few months with the inherent risks (and the feeling like crap beforehand). Daily injections are not forever long term option or a solution but the interim position.
Ideally IBD would go into remission but that is not on the cards in the immediate future I suspect.
Posted on crohns and UC boards. Someone must have had this problem before ... Surely? Thanks.