My son was taking asacol, 6MP, and a steroid for UC which was not in a controlled state. He had pains in the back of his and became very dizzy. Took him to emergency room. 8 days later after telling me there was nothing wrong with him, they finally diagnosed him with Venous Thrombosis. He died 3 days later. His death certificate said he died from Cerebral Infarction due to Venous Thrombosis due to hypercoagulability due to Ulcerative Colitis. I have looked and looked but have never found anywhere that this could have happened. I have heard of thrombosis but usually it is directed in the legs. I felt like I had done a lot of research on UC and tried to be prepared for his disease but it still took me totally by surprise and I was very unprepared and so were the doctors.
Q: Why does none of the info I read on UC talk about venous thrombosis being a rare side effect?
Carrie, first of all, please allow me to offer my condolences and deep sorrow on the loss of your son. May his memory be an eternal blessing.
You are very strong to post here, and share your experience. Thank you.
Yes; of course, as you have learned, some IBD patients--both Crohn's and UC patients--become hypercoagulable during severe flares. What happens is that, in response to circulating inflammatory cytokines, which are the chemicals in the bloodstream that cause inflammation, certain clotting factors in their blood change, putting them at high risk for blood clots.
Three of my four children have IBD (two have Crohn's; one has ulcerative colitis). The first of my children to be diagnosed, was diagnosed with CD at age ten. His presentation was complicated and severe; like your son, he had venous thrombosis. He had lower than normal levels of Protein C and Protein S, two necessary components of the clotting cascade. He was treated acutely with anti-coagulant therapy and, fortunately, there was a positive outcome. For a year, my son received daily anti-coagulant injections at home, and, for several years after that, anytime it seemed he was about to flare, I was to give him a daily "PRN" injection of the anti-coagulant, Lovenox, until the flare subsided. This was several years ago. Luckily, his peds GI was a "cutting edge" sort of guy.
The tendency for some IBD patients with severe disease to become hypercoagulable during acute flares may be an inherited trait, and, unfortunately, not all providers are aware of this potential risk. (I have sometimes had to "remind" the admitting resident when my children have been hospitalized.)
Here are a few articles and/or abstracts on this topic, that may of interest to the community:
Vascular involvement in inflammatory bowel disease: pathogenesis and clinical aspects.
Dig Dis. 2008;26(2):149-55.
Epub 2008 Apr 21.
Inflammation and coagulation in inflammatory bowel disease: The clot thickens.
Am J Gastroenterol.
2007 Jan;102(1):174-86.
Epub 2006 Nov 13.
http://www.ncbi.nlm.nih.gov/pubmed/17100967?dopt=AbstractPlus
British Society of Gastroenterology
Case of the Month: June 2005
http://www.bsg.org.uk/clinical_prac/jun_05/jun05_10.htm
Thrombosis risk reminder for IBD patients
28 October 2003
Eu J Gastroenterol Hepatol 2003; 15: 1157-1163
http://www.medwire-news.md/news/article.aspx?k=62&id=20076
Again, thank you so much for sharing your very difficult experience.
From my heart,
Hope
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