UC and Blood Clots

I was diagnosed back in Dec 2012 with UC while pregnant with my now 7 month old. This past July I started a big flare up and had chest pains with it. I found out not only was I flaring I have several blood clots. I have a PE, a clot in the heart and a few in other places. I was told this was due to my UC. Anyone else have this happen? I now must take imuran, remicade, and warfarin and have blood tested every week. I was told its time to think j pouch surgery.

Are blood clots part of uc?

I wonder if blood clots are not really directly related to the UC disease itself but actually related to sitting too long or sitting on the toilet excessively. I know people can develop blood clots sitting in a plane too long for very long flights so maybe all this toilet sitting or possibly other sitting is actually what is causing this.

Thankfully I have not have a blood clot but I have seen a lot of members struggle with them, especially recently.

I know there's a statistical relationship between UC and phlebitis/DVT, with us being more likely to get clots. I've never seen a causal relationship established. It could be the UC causing clots, some third thing causing both UC and clots, or something we do as a result of the UC causing clots. Anyway, it behooves us to take what preventive measures we can.

Everyone get up from your desk now and walk around the block!

I am going through this now, 6 DVT's during/after a flare, there is definitely a correlation between UC & DVT's.The DVT's didn't kill me, but the aftermath is not good, can't walk or do much else and the long range prognosis doesn't look good. What bothers me is the GI's do nothing to prevent clots when they know they are likely to happen.
The more I look into this, the more disturbed I become.

Wow Shadow..."many clots" - geesh. :(

it appears that some alteration in vasculature, either related primarily to what causes IDB, or secondary relation to presence of inflammation, does provide from 1.3 to 3.6 fold increase in chances of TE (thrombotic event) for IBD patients. while significant, this is still a small percentage of IBD patients. Still, a larger than expected number of IBD patients are hypercoagulable; and this needs research attention. Possibly some changes to standard of care in hospitals too.

Most of the evidence is veneous (e.g., deep vein thrombosis), but some evidence is arterial. Interestingly however most IBD patients do not have the usual genetic risk factors for arterial disease.

no special prophylactic thrombotic guidelines for IBD patients have been developed, but standard measures (mobility, massage) make sense. I read that any IBD patient that has had TE complications should be considered for Wafarin.

A recent 2013 review compared recent attention to TE in IBD to attention TE has gotten tin rumatoid disease.

conclusion of review said...
There is incontrovertible evidence that patients with IBD are at considerably increased risk of VTE and emerging evidence that the risk of arterial disease may be increased despite the likely reduced presence of standard risk factors. There are currently apparent gaps between this knowledge and clinical therapeutic action to prevent TE events. In rheumatology, the contribution of cardiovascular disease to morbidity and mortality was not recognized for many decades, but attention to risk factors and more aggressive control the disease is now standard of care. It is possible that the same evolution of clinical practice will occur in patients with IBD. Perhaps vascular disease is the sleeping giant of IBD.

Title: Venous and arterial disease in inflammatory bowel disease

Author(s): Tan, Victoria P.; Chung, Alvin; Yan, Bryan P.; et al.

Source: JOURNAL OF GASTROENTEROLOGY AND HEPATOLOGY Volume: 28 Issue: 7 Pages: 1095-1113 DOI: 10.1111/jgh.12260 Published: JUL 2013

BeatUC, I think the stockings fall under the "standard measures" I mentioned. I also think the reports of vascular people noticing greater risk for IBD is right in line with my noting "significant 1.3 to 3.0 fold increase", and especially the 1st line of my quote "incontrovertible evidence that patients with IBD are at considerably increased risk of VTE".

I am unclear if you thought my post differed from what your docs said, or what. The way you addressed your response to me suggested (to me) that you thought we had some difference of opinion. Maybe you could clarify exactly you meant, or if some point is confusing, maybe you could ask me to clarify something.

Generally it can be hard to evaluate statements like "2/3rds more chance" because medical/biostat literature switches between chances (probability), risk, relative risk, odds, and odds ratios depending on what is usual in epidemiology vs medicine vs public health vs whatever. Also issues of absolute vs relative often translate poorly into lay discussions, and very few people understand the difference in odds and chances.

If 2/3rds more chance is interpreted as a probability 66.67% larger than the general population this would be odds of 1.5. (Below 3 odds and probabilities are numerically close). Anyway 1.5 fold greater odds, or even 1.67 fold greater is right in the middle of the range I found in the literature.

Because of confusion between absolute (what percentage) and relative (how much greater risk) you can have one report note that much less than 15% (or even lower) patients are at risk, yet at the same time have this risk labeled "significant" or "considerably greater".

In the population the risk of TE in men upto age 50 is only about 1/2%, so a 3-fold increase in odds or probability is still less than 2%. This is both a small percentage, and a significant and considerable increase in risk. Also the risk increase with age, and once there is one TE, the risk of subsequent TE is very high.

If you don't walk a lot, or will be seated for a long time, the stockings sound like a good idea. If you need to be hospitalized for IBD or any other reason, I would ask for the compressed-air leggings. If you have ever had a thrombotic event (clot) I would definitely discuss meds with your doc. Unfortunately what prevents clots also predisposed to bleeding - so it can be no win for us UC patients.

But if someone is new to UC and trying to orient to all the things to worry about, there might be a lot of nutritional issues, medication compliance issues, infectious agent issues, bleeding iron-deficiency issues to to focus on before blood clots - but that's just going by the numbers and every case is different.