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ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/27/2008 2:45 AM (GMT -7)   
Just wondering if anyone here has every had a pulmonary embolism (a blood clot in the lung) or something of the sort with crohns..i just got back from being the hospital for over a month and that was one of my many complications.  I had a filter put in me, but they still don't know where the clot came from..i was active up to that point even in the hospital.  The docs said that it may totally be related to crohns because of the whole cuagulating blood stuff and inflammation throughout the body. Of course, they still really dont know!

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 9/27/2008 6:21 AM (GMT -7)   
I have heard of deep vein thrombosis which involved crohn's but I have never heard of a pulmonary embolism. I hope you get the answers you need.
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lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/27/2008 11:16 AM (GMT -7)   
Yes, in fact I am recovering from a Pulmonary Embolism in my right lung. I got it in October (2007). It was very scary, random and painful. I am 27 years old.

I would really like to know about your situation and blood clot. And of course I'd be more than happy to discuss anything with you that you would like.

I can always give you my e-mail address if you would like.

I am sorry you are going through this. It was very scary and I still have problems and get worried often. Hang in there!

LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/27/2008 2:59 PM (GMT -7)   
yeah if you could give me your email address that would be great!!..yeah they didnt put me on blood thinners because I was in the hospital for crohn's and was still losing alot of blood, so it would defeat the purpose and complicate things even further, it was a huge ordeal!...doctors told me this whole complication was very rare, so it's interesting to hear that it happened to someone else! i'd like to ask you a few questions and learn about ur situation to see if anything u went through is similar to my story..very interesting!! :)  

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/27/2008 5:24 PM (GMT -7)   
no problem @ all. I don't think we are supposed to post out e-mail addresses on here BUT really not sure how else to get it to you. I am sure no one will SPAM my e-mail from here. Gosh, at least I hope not, haha! No problem @ all: brittanyda@comcast.net

I will wait to hear from you. Until then, hang in there!
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 9/27/2008 6:28 PM (GMT -7)   

 I know how you feel, I am 44 years old and have had crohns for 30 years. When I was 17 I had my first blood clot in my leg. It went to my lungs, both lungs. I don't even remember everything I was so out of it. A few years later I had them again in one lung. Over the years I have had them in my left leg 4 times. My sister who does not have crohns has had them in her legs also. We both had blood tests done for what they call factor 5.....it's in our blood or dna or whatever they call it. That factor 5 makes it very easy to get them. Maybe you should ask for the test. They told me my crohns makes me even more likely to get them. I take some kind of med for it. And now that I know what to look for and feel for makes it easier......good luck

Sherri

email me sometime and we can chat   

    sherrib64@comcast.net


 

Post Edited (styxgurl) : 9/27/2008 8:21:18 PM (GMT-6)


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 9/27/2008 8:17 PM (GMT -7)   
When I was admitted in July, they put me on Lovenex 2x daily. They were fearful of clots because apparently, you are already at risk from being bedridden and then double whammy if you have Crohn's. This is interesting to me because this was the first time I was told that I was at higher risks for blood clots because of my Crohn's. I understand that if you are immobile, you are at risk, but Crohn's puts you at greater risks? This I was told. It DOES make sense, but I'm still trying to wrap my brain about it. I had a very difficult time trying to concieve and then a difficult pregnancy as well. I was on Heparin and IVIg and Baby Aspirin while pregnant. Luckily, my fertility doctoro is agreeing to run a blood clotting panel on me to ensure I don't have blood clotting disorder(s).

Interested to hear more about it as well as back in Feb, I was rushed to the ER because I couldn't breathe. My lungs were clear, but I was struggling hard. They kept trying to say it was my anxiety and it was just an anxiety attack, but this was NOT normal. I've NEVER had an anxiety attack like that. In fact, I have anxiety, but it doesn't "attack" me... It builds and builds and takes nearly a whole day for me to get to the point of needing something for it. I've taken MAYBE a total of 5 xanax my entire life! They ran ALL kinds of tests on me.. and nothing. They were terrified I had a blood clot in my lung, but they never found one and after SEVERAL nebulizer treatments...they sent me home.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


woahitslibby
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 9/27/2008 9:27 PM (GMT -7)   
I've had 2 clots due to the crohn's - they happened while I was flared up and I have no other genetic risks factors. Luckily never of them broke off. Were you guys flared up when you had clots or were they totally random? because that would be really scary if we were at a higher risk even when in remission? I was under the impression that the risk was from dehydration and active inflammation.

When I was in the hospital with the first clot my doctor showed me some interesting studies that low molecular weight heparin (a blood thinner) can actually improve crohn's disease in some people. I know it seems totally counter-intuitive to give someone whose bleeding blood thinners and some people in the study did have worsening bleeding and no improvement but it if works then you can get 2 birds for one stone. My doctor wanted me to try it but its 2 shots a day and I was like um no, thats ridiculous.
Dx Crohn's 12/02 at age 14
Blood clot in right leg 12/06, another on brain 10/07
currently on Remicade, 7.5 every eight weeks, coumadin


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 9/27/2008 9:50 PM (GMT -7)   
woahitslibby said...
I've had 2 clots due to the crohn's - they happened while I was flared up and I have no other genetic risks factors. Luckily never of them broke off. Were you guys flared up when you had clots or were they totally random? because that would be really scary if we were at a higher risk even when in remission? I was under the impression that the risk was from dehydration and active inflammation.

When I was in the hospital with the first clot my doctor showed me some interesting studies that low molecular weight heparin (a blood thinner) can actually improve crohn's disease in some people. I know it seems totally counter-intuitive to give someone whose bleeding blood thinners and some people in the study did have worsening bleeding and no improvement but it if works then you can get 2 birds for one stone. My doctor wanted me to try it but its 2 shots a day and I was like um no, thats ridiculous.


Never got an official clot, but was treated as preventative while flaring.

On your 2nd thing about the Heparin. That is VERY interesting as I felt GREAT pregnant. No idea if it was the pregnancy, the Heparin, the asprin, or the IVIg.... your guess is as good as mine. We all vote the combination! But, yes, 2 shots a day for Heparin, and they leave some pretty nice bruises! I did 2 a day everyday for nearly 28 weeks. I was SO glad to be done with those shots.. SO glad!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old

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