Crohn's and Blood Clot in Lung

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Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 11/14/2007 11:15 PM (GMT -7)   
Has anyone with Crohn's gotten a severe blood clot in the lung? I am dealing with this on top of my flare and it has just been awful.
Let me know. Would like the details as to your experience with it. Not Good!
Appreciate all feedback!
Thanks so much!

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 11/15/2007 4:32 AM (GMT -7)   
Are you by any chance on Remicade or Humira for your Crohn's.

How old are you? If you are relatively young it might be worth while to be tested for a congenital clotting disorder.

I'm sorry to hear you've encountered this! Scarey as all get out I know! Good luck and God bless!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 11/15/2007 10:03 AM (GMT -7)   
Kasper87 said...
Love have you seen the doctor for this? This is deadly if that reaches your brain. How did you find out that you had a blood clot in the lung?
You possibly might have an embolism.

It's actually just as deadly in the lung! They usually start in the leg and travel to the lung. Where if not caught early enough can lead to death quickly. Scary stuff, my Grandfather died from it (his blood clot started in the pelvic area after prostate surgery).
I have read about it being an increased risk with Crohn's. I have to take birth control pils, which futher increases my risk. So it's something I certainly worry about!
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 11/15/2007 11:11 AM (GMT -7)   
Responding to reply's regarding my blood clot in the lung (thank you by the way)

OH YEAH ARE YOU KIDDING? Of course I am seeing a Dr. for it about 10. Things are under control.

I am on Humira and have been for about 8 months. It is not that though. No studies @ all about that. How it happened was very very scary.

about 3 months ago I was diagnosed from Severe Pneumonia (now that is and most likely caused to my immune system in general and then being on the Humira makes it a lot worse of course, as we all know). A LOT of pain was associated with this pneumonia and I could not even make my bed, walk up stairs @ all, etc. without having to sit to breathe. Yes I am young @ 27. So I went to the Dr. again (this was after 1 round of antibiotics). Well the Dr. I saw @ the time (not my gastro) said oh yeah this is a bad case of pneumonia and of course I am thinking are you sure? So another round? and then still as bad so one more round (of like the strongest antibiotic there is). So finally told my boyfriend and my family that tomorrow (meaning a Wed morning) I am going to drive myself to the hosp. and NOT leave until they tell me what is wrong and reassure me I am okay. At this point I have been suffering with all of these awful symptoms (pain when breathing, hard time breathing and shortness of breath, pain everywhere on my body, slight fever, etc) for over 5 weeks so I figured I would drive myself and call my loved ones once I find out the prob.

Well two hours later the Dr came in and told me I have a Moderate-Severe size blood clot in my lung (yes this is an AMBOLISM in the lung AKA: PS) I was in the hosp for 5 days on heavy duty blood thinners and am to this day (it has only been about 4 weeks). I have been OFF of birth control pills literally since the day we found out FOREVER. It is a very painful thing to have.

Oh and to mention I was taken off of the Humira temporarily to fight this pneumonia about 2 weeks before this all happened. So a week after the blood clot I ended up back in the hosp for another 5 days or so do to A TON of Blood loss (that was scary) but really something I deal with because of my Crohn's anyways. But because it was so much in a 10 min. time period AND I am on blood thinners it was even scarier.

My Crohn's is not doing well because all of this obviously so that is hard! I am back on the HUMIRA though and waiting for that to kick in. We will see. My Gastro Dr. is amazing so that makes things that much better I guess.

Some reasons as to why I got this clot:
* Birth Control Pills
* Some genetics ARE in me (and yes I did under go all tests for that)
* Crohn's has some risks for clots (inflammation, etc)

So as my Pulmonary Dr. says let's not look for any other reasons as to why you got it as to this is enough reasons to get it! I agree.

I will find out soon how long I will be on blood thinners. They are having a very hard time keeping my levels where they should be with this clot BUT I am SAFE because I I I I caught this in time. PLEASE BE AWARE!! of your body. This is a very scary and serious issue.

I am having such a hard time breathing so I under-go 2 breathing tests next week and I will see a great blood Dr. within a couple of days to see how long term these blood thinners, etc. will be.

I think I answered everyone's questions! Quite a big deal and really scared the Heck out of me.


Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 11/15/2007 7:05 PM (GMT -7)   
Hi Brittany Glad to hear things are getting better for you it sure sounds like it is scarry. Your right it is good to get them found early. Thank you for the info on it ,I have lung problems so it is good to know these things . Good you are able to get back on your Hum. how is it working for you? Hope you continue to improve, and keep in touch. lol gail

Veteran Member

Date Joined Jul 2003
Total Posts : 1256
   Posted 11/15/2007 8:54 PM (GMT -7)   
WOW that is scary stuff. Glad you are doing better.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)

New Member

Date Joined Oct 2007
Total Posts : 9
   Posted 11/16/2007 6:51 PM (GMT -7)   
I also developed a blood clot in my Lung (PE) during crohnes flare.  It was very scary.  I was put on Cumidin (sp?) for 6 months.  I was in the hospital for 2 weeks.  I was 24 years old at the time.  I am now 29 and I have not had another one.  Please feel free to email me with any questions.  Good luck.

Post Edited (desperate4help) : 11/16/2007 6:55:29 PM (GMT-7)

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 11/17/2007 12:56 AM (GMT -7)   
I was reading an article about it, I guess with Crohn's (or IBD in general) we have 3.5 fold higher risk of a PE. That is VERY scary. I'm going to talk to my GYN in January when I see her about me being on birth control. Not sure what I can do about it though, if I go off of it I get to deal with very painful ovarian cysts and messed up periods. Kind of a catch 22 for me.

Doesn't it just seem like were at a higher risk for EVERYTHING? Everything I read about is connected in some way to Crohn's. I just can't focus on it too much, enough to worry myself sick! But I'm very glad you caught it early and will be okay! Such scary stuff.
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

Regular Member

Date Joined Jan 2008
Total Posts : 37
   Posted 1/10/2008 4:43 PM (GMT -7)   
I didn't get a clot in the lung (yet) but I did have one in my brain, knee, and several in my liver last year.  It was not fun at all.  I spent a month in the hospital in the stroke unit and I'm now on blood thinners for life which is pretty unlucky for a 23-year-old.  It's a rough balance between anticoagulation and excessive bleeding for somebody with active Crohn's and a clotting disorder :(
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