Update: UC Hospitalization followed by Pulmonary Embolism/Newly Diagnosed 17-year-old

Because I'm so new to this forum, I'm going out on a limb & posting info that may be known here already:

In a nutshell:

People with inflammatory bowel disease have double the risk of developing a potentially deadly blood clot (venous thromboembolism) in the legs or lungs as do people in the general public.

AND:
VTE is more common in older people, whether or not they have inflammatory bowel disease. Studies show the risk of VTE in people with inflammatory bowel disease is highest in younger age groups, compared with the general population.

In people aged 20 or younger, the risk of pulmonary embolism was SIX times higher for those with IBD.

My son was hospitalized for a week in August with sudden-onset acute UC/severe pancolitis. Ten days after his discharge he was readmitted with multiple pulmonary embolisms, a life-threatening medical emergency.

During his first hospitalization, he was heavily sedated & immobile for the first four days. Peed into the urinal at bedside. I am so troubled that none of the four doctors treating him mentioned even once that his risk for blood clots was increased by UC. When combined with hospitalization it was greater still. The medical literature is so clear on this - and accessible to me, a layperson - how could this have been overlooked? No prophylactic measures were taken, though they were certainly available and widely used.

We were blindsided by the UC and had information coming at us from all sides - yet nothing about blood clots and the possible pulmonary embolism that could result.

Another shocking statistic I've found is that pulmonary embolism is the leading cause of preventable death in non-surgical hospitalizations lasting longer than 2 days. It seems logical that hospitals would be all over this...yet ours wasn't, and the statistics demonstrate other hospitals aren't either.

After reading multiple articles published in the medical journals, it seems clear that William should have been treated with Clexane or another low-weight molecular heparin. LWMH is a safe and effective blood clot prophylactic used routinely for both surgical and non-surgical patients...if UC patients are bleeding severely, there are excellent non-drug alternatives as well!

My kid was discharged with instructions to take it easy for a week or two and slowly return to light activity. Instead, he endured the agonizing pain of pulmonary embolism and a resulting pleural effusion. His right lung is damaged, the clots may be reabsorbed eventually, or they may calcify in his pulmonary arteries and continue to cause problems. He must take Xarelto for at least six months, a blood thinner much more powerful than the LMWH he should have received to prevent all this misery. Xarelto is much riskier for UC because of the known bleeding risks (he's already having multiple heavy nosebleeds every day, even in his sleep). Because he's had pulmonary embolism once, he's far more likely to have it again...another lifelong medical problem to monitor...

I would like to hear from any UC posters who've undergone a blood clot/pulmonary embolism experience, especially after a non-surgical hospitalization - or anyone who was hospitalized w/ UC and received preventative measures.

So hard not to be disenchanted with the medical team.

Wonderful that you are posting this information for people. I've not heard of UC proclivity for VTE and especially for young people.

Your hospital experience doesn't surprise me but is sad anyway.
The days of trusting medical professionals are long gone, in fact those days were no better/worse it's just that we "amateurs" have more access to information now and are able to share it.

Your son is lucky to have you for his advocate.

My gawd, I would so call a lawyer and find out if this is grounds for a law suit! I have never sued anyone but this is gross, I am so sorry!

DMC2011, I'm meeting w/ the hospital medical director next week in search of any possible explanation.
After wallowing in research for days, I don't believe there is one.

Katmom, we're in Lexington, Kentucky. We have two second opinions coming up at the University hospital (this is not where he was treated in prior hospitalizations).

Mayo & Cleveland are not realistic distances for us, but would love to hear what you know.

Did your daughter have the inflatables after surgery, or was her hospitalization longer that time? Did she ever get LMWH as a preventative?

Thank you!

Thanks for posting the info about "hypercoagulable state". Makes sense. Me as well as some others on here have noticed some vascular issues. I see a university doctor in a large urban medical center. It seems they wait for issues to arise and then address them. They try not to get too far ahead and give each patient the most optimistic outcome. That's my observation. I don't agree with this approach because the layperson would like to know more information. Keep us posted. You are doing everything you can to be a great patient advocate for your son. Does that hospital have a patient advocate organization that could help you?

You will Bella Mom! You were blindsided by this(as we all were but worse for a mom!). So now that you got your balance back you so got this! I can tell! Rooting for you both.

I am recovering from DVTs in both legs. Sorry you had to go through this.After I did some research, I was shocked at how high our risk of DVT is. Why the hell didn't my doc ever tell me this and why didn't they at least put stockings on me in the hospital?
This situation makes me quite angry.

I've been hospitalized four times at New York Presbyterian (once for UC, three times for j-pouch surgeries) and every time I was given sub-q heparin shots (blood thinner) every twelve hours. It's my understanding that these are ordered for everyone in the hospital unless they have a special bleeding risk. Like others mentioned above I also had the leg compressors after each surgery until I started walking. I'm pretty surprised to hear that heparin isn't standard operating procedure everywhere, it's so routine at NYP that I just assumed it's used everywhere.

Bella'smom, my DVTs were pre-hospital and I was still trying to be active, bike riding, walking, they still happened and I'm very upset about it.

Pluot, thanks for the info and sharing your hospital name.

bw21, the medical literature that seems definitive on the subject dates back farther than that, although it's clear that the recent (2010 and forward) articles are easier to find, at least for me...

I am going to look into CCH this week & thanks for mentioning it! If you have any Dr. info to share I'd be grateful.

bella'smom

Bella'sMom,

I am so sorry to hear it, and hope he recovers ok and sooner.

Problem is that we all have to be our own best doctors and know stuff that even doctors arent' aware of because they really don't take the time to peruse the medical literature, but they certainly have time to listen to the drug reps...

a few years ago, I remember reading the studies on the high risk of blot clots associated with IBD and mentioned that to my GP and Gastro - neither of them knew anything about it.

Sorry you're going through all of this.

Big hugs to you.