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Crohn's disease and blood clot / phlebitis risk

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Crohn's Disease
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Posted 9/20/2010 1:15 AM (GMT 0)
I was wondering how many of you have had issues with blood clots or have been warned about the risk with blood clots and Crohn's?

My doctor has never mentioned it and knows I take the birth control pill. I met a new neighbor who is about my age and has Crohn's disease and she said her doctor is adamant that she not take the pill because she is already at increased risk for blood clots and he doesn't think any of his female patients should be on the pill. I ask because 1. my doctor has never said anything 2. I stopped the pill for a bit, but just recently restarted it and now I am worried about it. Especially because I have been in a long term flare with off and on bleeding for several months and that is when the risk is highest.

Does your doctor ever warn you about blood clots with IBD?
Posted 9/20/2010 2:15 AM (GMT 0)
I have had blood clots go to my lungs. I also have a friend with crohns that had the same thing happen.

If I had known the risk, I wouldn't have taken birth control pills. Crohn's predisposes you to clots because our blood clots faster than the average person. Birth control on top of that puts you at an additional risk of clots.

My doctors never warned me about the risks, but when I had my annual exam with my GYN (after having the pulmonary emboli) she said she would probably not put patients with crohns on BC without them knowing what a risk it was.
Posted 9/20/2010 2:33 AM (GMT 0)
ccsg:  Idk about excessive clotting, being on Entocort, I seem to bruise and bleed much easier and so worry the opposite is true.  All labs are within "normal" range but fell with so much bleeding into my lower leg that it got hard and bruised from knee to anklem my PCP thought it was steroid related.  Maybe more med dependent than diagnosis dependent.   
Posted 9/20/2010 3:43 AM (GMT 0)
It is a well known medical FACT that Crohn's predisposes you to clots. Patients who have crohn's hypercoagulate...which means you clot faster than normal.

I wasn't offering my opinion about it...it's a fact that crohn's combined with birth control puts you at a higher risk for developing clots.

GYNs should warn their patients, but since each GYN may have 1 or 2 patients with crohn's, sometimes they do forget.
Posted 9/20/2010 5:20 AM (GMT 0)
What makes me mad is that my Gastro doc never said anything. Still a lot of people aren't familiar with Crohn's so I expect my Gyno and PCP to have limitations and not know everything about my Crohn's. But I feel like my Gastro should have at least discussed the risks with me. Everything I have read recently seems like it is pretty well known that Crohn's increases your risk, so obviously my Gastro should know. Every time I go to the Gastro the first thing they do is ask you all your meds and supplements and the doctor goes over them with me everytime. He has advised me to limit the fish oil due to increased risk of D, but doesn't say anything about the increased risk of clots with the birth control pill to a female over 30 with active Crohn's?
Posted 9/20/2010 1:39 PM (GMT 0)
If you think about it, it's a pretty normal reaction to a bleeding disorder. With Crohn's disease, you lose a lot of blood through intestinal bleeding. The body tries to prevent this blood loss by hyper-coagulation. I recall that when my husband was in the hospital bleeding badly and generally deathly ill, his blood work would always show a very high number of thrombocytes, and that was why they insisted he wear those circulation boots, and walk around as much as possible - to prevent blood clots.
Posted 9/20/2010 1:43 PM (GMT 0)
I took birth control pills for probably 10+ years, and never was warned against or had any problems taking the bc pill. In fact, it made the time of the month much easier than after I quit taking them. I ended up having a complete hysterectomy because I couldnt stand being so miserable 3 weeks out of the month.
Posted 9/20/2010 1:57 PM (GMT 0)
Interesting. This is all news to me. Of course I don't do birth control pills but it would be good to know we hyper-clot. Sounds like a super hero :)

I don't think the doctors can keep track of all the things our meds do to us or this disease either BUT I don't recall ever even reading about this on websites or books about CD???????????? Anyone have a link to a reputable site?
Posted 9/20/2010 2:04 PM (GMT 0)
Interesting stuff!

A few years ago I actually got a referral by my GI to a haematologist (by sheer coincidence it was the same haematologist who had treated my brother at least 20 years ago; he actually remembered the surname (which is admittedly a distinctive one) and, er, this isn't really relevant is it? Moving on... >_>). I never got what it was exactly about, but it was something to do with the blood clotting more than usual. I had to have a bone marrow test where a needle is stuck into your hip bone - not very pleasant.

End result was, the haematologist found nothing wrong with me and dismissed me with an airy wave of the hand (so to speak). But interesting to find out years later that this is a known consequence of Crohn's. Makes me wonder if my then GI doc of the time knew that or not. It was never mentioned again and I never got any warnings about the pill (I wasn't on it).

Incidentally, are occasional crampings or 'tightenings' in your calves symptomatic of this? :-/
Posted 9/20/2010 3:46 PM (GMT 0)
the risk is only significant when you have active disease
Posted 9/20/2010 4:12 PM (GMT 0)
JP-My clots happened when my crohn's wasn't active....

Cupcake-I completely agree. I was on BC for years and was NEVER warned. It wasn't until a friend of mine had clots go to her lungs that I knew there was any risk. Even then I didn't think I was at that much of a risk because my drs never said anything. I also thought that because my friend had an abcess and they thought that factored in to why it happened to her, it couldn't happen to me. You would think that between a PCP, GYN and GI that someone would have said something. I guess because I'd been on BC for so long and never had problems they thought it wasn't an issue.

Since being off the pill my periods are a lot worse. My hormones are also all over the place. Oh, how I miss the pill...
Posted 9/20/2010 5:07 PM (GMT 0)

NiceCupOfTea said...
Interesting stuff!

A few years ago I actually got a referral by my GI to a haematologist (by sheer coincidence it was the same haematologist who had treated my brother at least 20 years ago; he actually remembered the surname (which is admittedly a distinctive one) and, er, this isn't really relevant is it? Moving on... >_>). I never got what it was exactly about, but it was something to do with the blood clotting more than usual. I had to have a bone marrow test where a needle is stuck into your hip bone - not very pleasant. ...

 And CrohnieToo is saying:

Yes, interesting! Sometime between early 1976 and early 1978 my beloved family doctor died and I was shopping for a new family doctor. I thought I would be "smart" and stay away from anyone who did any kind of surgery so went to see an "internist". (Back then there weren't that many "specialists" of any kind in our area).

 

Anyway, this "internist" said he wanted to do a bone marrow sampling. I thought that odd since I had just come back from Mayo Clinic and THEY hadn't said anything about wanting to do a bone marrow so I asked this internist WHY he wanted to do a bone marrow when Mayo hadn't wanted to. He had the stupidity and the audacity to tell me that "it wasn't necessary for me to know, that I was ONLY a patient, it was sufficient that HE, THE DOCTOR, felt that one should be done and thus he would do it!!!!!

 

Ha! That is what HE thought. Needless to say the bone marrow test never did get done (he explained it as inserting a needle in my breast bone or collar bone (I forget which) and withdrawing some bone marrow from there). What DID get done that day was a good clearing of my lungs and a strong parting of the ways between that "doctor" and I. And, no, I did NOT pay the bill for that office call either!

Posted 9/20/2010 5:53 PM (GMT 0)
I recently went the the emergency room with terrible upper stomach pain, right thru to my back. While they did a CAT scan to look at my gall bladder, they came across a blood clot in the portal vein to my liver!! (Portal Vein Thrombosis) I guess it's in a very rare spot and usually very sick people with liver disease or cirrosis of the liver might have one there. Well, because I didn't 'fit the bill' of someone who would have gotten this clot, (very healthy otherwise except for what I thought was a touch of IBS for many years) they did an ultrasound to confirm it. Sure enough, I've got a clot!

They admitted me right away, got me on heparin and coumadin. When I got out they scheduled me for an endoscopy and a colonoscopy (while they were at it) and to my surprise, I was diagnosed with Crohn's!! I guess I have a 'severe' case. My dr is shocked as I don't really have any symptoms! They also found the stomach pain is due to acid reflux. The Prilosec has made that feel 100% better.

The dr put me on Entocort EC for now but, said I need to take something stronger and wants me on 6MP which I am concerned about. I am afraid of taking something with so many possible side effects when I feel so good.

So, within 2 weeks, I was diagnosed with the blood clot, acid reflux and Crohn's!! And I still feel great. It's weird. I had a brother in law who passed away in January from a bleed in his brain because he was on coumadin and also had Crohn's!!! His coumadin level was WAY too high and they couldn't do anything to save him.

Please talk to your dr's about the chance of blood clots. I am VERY lucky that they just 'happen' to find mine. I'm being treated with coumadin and it could take up to a year to go away. I will see the hematologist this week and see what his thoughts are on the Crohn's relation to the clot. I will ask him about a 'screen' that they can put in to avoid another possible problem.
Posted 9/20/2010 7:25 PM (GMT 0)
After all these years of living with CD I never knew that I was at a higher risk for clots. I was on BC for years for my bone health and heavy periods, not actually for birth control. I just recently stopped, but my endocrinologist is thinking that I might need to go back on. Hmmm......

My husband was just diagnosed with 2 clots from a torn calf muscle. He does not have CD. For some strange reason, what ever he gets, I somehow always end up getting, but getting worse. The last time he torn his calf muscle, I tore mine about a month later and it took much longer for mine to heal. As you can all imagine, if he gets a bug, the same one puts me in the hospital. He's been teasing me that I would be finding a way to "steal his clot". Now just wait til I tell him I am more likely to get a clot! If patterns hold out, I will end up with 4 clots by the end of the month. devil
Posted 9/20/2010 10:52 PM (GMT 0)
I've had Crohn's for years. Two yrs ago I developed a clot in my left calf. Thought I had pulled a muscle. Two pieces went to my lung. Long story short, my Hematologist told me also that we (people with Crohn's) are at a higher risk for clots than folks who do not have CD. Once I was taken off the thinners, he told me to take a coated baby aspirin daily from now on and on long trips, take time to walk every two hours. That was the only clot I've ever had and once it moved the only symptom was pain in my upper chest when breathing in, which did not last long and then Fever only, around the clock for days like 101 to 103. Anybody concerned with developing a clot should ask their Dr. about taking a baby aspirin every day. Good Luck to us all.

Steve

Post Edited (asc58) : 9/20/2010 4:55:22 PM (GMT-6)

Posted 9/21/2010 1:16 AM (GMT 0)
So I'm doing a lot of reading about clots and DVT because of my husband and I just came across this in a study I was reading:

"Our data show that not only are people with inflammatory bowel disease at risk for thrombosis, but they are in the group dying with PTE. Patients with inflammatory bowel disease have a known increased tendency toward thrombosis, and there are reports of DVT as well as PTE in the literature.52 The reason for this increase appears to be multifactorial, but of note is that there are serologic abnormalities during inactive Crohn disease and ulcerative colitis that may predispose patients to PTE, including a high incidence of abnormalities in fibrinolysis.53 In the appropriate clinical setting, PTE needs to be considered in patients with inflammatory bowel disease."

So it would seem that it is not a factor of just when the disease is active but also when it is inactive, basically all the time.
Posted 9/21/2010 1:37 AM (GMT 0)
I'm sorry... what is a PTE?
Posted 9/21/2010 1:52 AM (GMT 0)
Pulmonary ThromboEmbolism (sp?)
Posted 9/21/2010 2:01 AM (GMT 0)
Ohhhh... thanks! I'm still new at this although I should have known as I just found out I have a PVT and could have had a PTE!! LOL
Posted 9/23/2010 3:56 AM (GMT 0)
My daughter has seen a slew of GIs but nobody mentioned this. Yet another reason I visit HW to try to keep on top of stuff. 
Posted 9/23/2010 4:42 PM (GMT 0)
Went to the hematologist yesterday to get some answers to why I might have the PVT. (portal vein thrombo.) At the time they found it, I wasn't diagnosed with Crohn's yet. All the blood tests came back negative so, now he's blaming it on the birth control pill and the Crohn's. I'll have to stay on coumadin for at least 6 months and I'll have another ultrasound in Dec to see if the clot is gone!
Posted 10/3/2010 6:00 PM (GMT 0)
Yes I had venus thrombosis in the brain (basically a stroke) and clots in the abdomin the first year I was diagnosed. Crohn's can cause hypercoagulative state. Beware of clotting with crohn's- although it may be new info (as in the last 10 years) that crohns and clots are so closely connected. It seems I was a rare case 12 years ago when I had my stroke due to crohns.

best of luck and I have not been on the pill since i was dx with crohns due to clotting risk

B
Posted 10/3/2010 11:59 PM (GMT 0)
An article from earlier this year, which says the risk of clots is highest during a flare: 

http://www.sciencenews.org/view/generic/id/56174/title/Inflammatory_bowel_disease_hikes_blood_clots

Posted 10/4/2010 12:47 AM (GMT 0)
I found out this week that I tested positive for a blood disorder called Lupus Anticoagulant Syndrome. The nickname is 'sticky blood'. I read an article which states the Crohn's can cause this blood disorder.

So, not sure where my blood clot came from. Probably a combo of the birth control pill, Crohn's and this blood disorder.
Posted 10/4/2010 5:17 AM (GMT 0)
Thanks for bringing this one up! I also have never been warned of higher clot risk with Crohn's. I've been on bcp for years and years also for bones, not birth control. In fact, I even *asked* both of my GIs (old and new) if I was ok on bcp and they said yes. I was off of them for a year or so and never even had a period (only 42, not menopausal - labwork) so it's not like I need to worry about getting pregnant. (especially since I don't even date!)

Clots are scary and I'm so glad I now know... I guess I'll wait until my next DEXA in Jan then go off of them (assuming no more osteoporosis)
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