Blood Clots?

I really need to quit doing "research" on the internet, given my hypochondria...

Anyhow, I noticed while doing some UC research, that people with UC are at higher risk for deep vein thrombosis, aka blood clots in the legs. This concerns me (besides hypochondria), in that I spend a good amount of time in front of the computer and I love to take trips on the train.

Now I was aware of DVT before my diagnosis of possible UC, so I always make sure to get up and move around while on the computer--go to the bathroom, fix a snack, just walk around the living room a few times. And while I'm on the train, I try to move around every four hours or less. But...I like playing games on the computer, watching YouTube, etc., and I love the train, even if I only get to do it once or twice a year.

So is the internet telling the truth on UC and DVT? How bad is the risk? (I'm not going to be too worried if the risk of 1% has risen to 2%.) Has anyone here had an experience with this? Should I be worried, start looking into compression stockings, cancel any further train trips in favor of Lawn Dart Airlines?

I talked to my old GI doctor about this, but he told me never to believe anything I read on the internet, and that it was silly to worry about such things. But this is the same GI doctor that I recently "fired"...

DVT happened to me as a result of a flare (or pred -not sure). Now DVT has become my biggest danger from UC resulting in the need for a IVC filter. Even my GI doc didn't know about the UC/DVT connection until I printed out some medical papers on it for him. There is quite a large risk for DVT in UC patients -who knew?
UC the gift that keeps giving.

Absolutely agree Ipoop, well said. Here is a link to a study of the correlation between DVT/UC:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3964389/

"despite extensive evidence supporting the association between IBD and VTE, among physicians, there is still a lack of recognition of this risk, with dangerous consequences for patients"

I experienced a massive abdominal clot, a DVT that clotted the length of my abdomen to my knee, and a pulmonary embolism. I definitely had other major contributing factors that led to all the clots, but discovered after all of it happened that UC is a huge factor, especially while flaring. However the odds are in your favor! Just keep your circulation flowing like you have been and most likely you'll never experience blood clots! If you ever experience leg pain, swelling, loss of feeling, or pain similar to a muscle cramp but worse and ongoing, see your doc to rule out clots! :)

I have had 3 PVT's/SVT none in the past 10 years though. Superficial venous thrombosis.
The resolve on there own, but sometimes swelling will not go down and need short term pred.
They hurt like heck, I know I caused one in my foot just by jumping up and down.
Old Mike

I'm in the OR waiting room right now because my mother had a blood clot while hospitalized for a severe flare and her BP went dangerously low, and then they suddenly discovered a perforation in the ICU - I don't understand how this happened, I am so angry. She entered the hospital with low levels and some pain but then spiraled quickly. Her surgery is very high risk because of the blood thinners she was on for the clot and the 100 other problems caused by the colitis. They did not make us feel good about it. They don't know what's going on so won't know the situation until they go in. Best case scenario is successful ileosotomy it seems.

Ohhh, wow....I hope surgery goes smoothly and there are no complications during her recovery.

Do they know the cause of the perforation?

Please keep us updated.
Hugs,
q

My mom is fighting for her life.

After 9 days in the hospital, something seemed very wrong. She was rushed into the emergency surgery and they found that only a small portion of her mid colon was perforated and diseased - from a diverticulosis rupture...the rest and the small intestine looked good. She was so high risk for surgery because of the blood thinner she had taken for the clot that the surgeon did the fastest thing - colostomy bag - and got out of there. From that perspective the surgery was a success and less complicated than they had feared.

But now, that goddarn blood thinner is making her bleed so much and not clot - it hasn't left her system in the usual 24-48 hours because her kidneys aren't working right after the surgery. Last we heard the bleeding was a little better and her BP was being maintained with only one BP medication rather than three...but it is still a crapshoot. She's in a ventilator and can't even be fully sedated because of her BP. It's an absolute nightmare, all of this.

Why isn't there a better way to image the bowel? They had no idea until they went in there, all their guesses were wrong.

Sad to hear of the serious turn and condition your mom is in now. What imaging did she have, and how was it suspect she had a perforation?

I hope things start in a direction of improvement.
q

How old is your mom? It is news in the right direction since they worked quickly once this came to view.

Thank you for the update. Start a new thread since the situation has changed drastically from blood clots.

q

mizzemm, I have been following your mom's current issues. I do hope things continue to improve for her. I had a blood clot hit my lung & also had a mild heart attack. I had the filter put in & it was not as bad as I imagined it would be. I was awake most of the time & felt nothing. I was given medication & did fine with no problems afterwards. The clot originated from my legs, I have issues with circulation. I was 60 when this happened. I was considered a fall risk hence the filter instead of a blood thinner. My husband has been on a blood thinner for 20 plus years because of blood clots. Keeping his INR right can be a challenge at times. I do hope she continues to get better.

Take care.

Hi beat UC - really? The doc who did the IVC procedure told us they could stay in forever...he said there is sometimes a risk of them migrating but very rare...

I've been reading this thread about blood clots and wanted to chime in on it - although I am not on the forum very often. I was scheduled for total knee replacement last summer and developed a DVT thus postponing the surgery. My UC has been in remission for about a year and a half, so I was not having any issues at that time. I take Lialda daily and use mesalamine enema every night. It has been working for me for a good while now. Anyway, when I developed the DVT, my surgeon had me see a hematologist who did a lot of testing and determined after testing over several weeks that I have lupus anticoagulant syndrome (not Lupus itself). He said, and my gastro dr. agreed, that it is probably a result of having UC and it being an autoimmune disease. There is also a history of blood clots on my mother's side. My grandmother died from a pulmonary embolism and my mother has had two of them, but survived. When I was finally able to have my knee surgery, I had to have an IVC filter placed, but it was removed about two months after surgery. I started taking blood thinners as soon as the DVT was found and will have to take for the rest of my life due to the Lupus Anticoagulant diagnosis. This scares me a good bit in the event I should have another UC flare. When my mother had her first PE, she had an IVC filter placed. about 12 years later, she had her second PE. The filter had become clotted up and started blocking the blood flow. Her doctor explained that her body created new vessels around the filter to allow for blood flow (the body is really amazing). But, she cannot have another filter placed and she cannot have that one removed because it has become so embedded where it is. Sorry this is so long and all over the place, but it is a little more information on what can happen with blood clots and filters. I think a lot of people are predisposed to having blood clots and may not know it, then other issues just compound the problem. My gastro dr. had warned me that my risk to develop blood clots was higher because of the UC and family history. I think either one can be a problem, but combined are a much bigger problem.