Blood clots anyone?

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Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/10/2009 6:07 PM (GMT -7)   
So I'm on my 10th day in the hospital and ready to go home....not for crohn's this time though. I was admitted after they found that I had pulmonary embolisms in both lungs. My legs were scanned by ultrasound and they didn't find any clots there, so they don't know for sure where the clots came from, though it's assumed they came from my legs because that's where most pulmonary emboli come from. They're also assuming that being on birth control caused the clots. Here's what makes me wonder though: a good friend of mine, about the same age, also has crohn's, also was on Humira also went through the same situation last year. My doctors (both pulmonologist and GI) say there's no link between Humira and clots, but I kind of wonder...it's one of the things that we had in common when both of us got clots that went to our lungs. Also, why would I get clots after I stopped taking birth control, and not while actually on it? I stopped taking it about a month before getting the clots.

I'll also note that my GI explained to me that crohn's patients hypercoagulate, making us more prone to clotting (just another thing we need to worry about being predisposed to) and that could be the reason...

Anyone else here with CD have DVT's or pulmonary emboli?
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 10/10/2009 9:31 PM (GMT -7)   
I haven't had this, but I too have heard about us being more prone to it. My Grandfather died from a pulmonary embolism (his was from prostate surgery though), so it freaks me out. I'm also on birth control pills. I have terrible periods, migraines, cramping, ovarian cysts ect... so I don't want to go off of them. But can't help but worry about such a thing.

How did you know you were having them? Were you short of breath, coughing or anything? Is your Crohn's flaring up? I've heard it's more common when we're in a flare. So scary, I'm glad your home and doing better!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/10/2009 9:40 PM (GMT -7)   
People with IBD are predisposed to clots. I think it's because of the nature of the disease - it causes bleeding, and when you bleed, the body's natural response is to staunch the loss of blood by clotting. That's why when you are in a flare with bleeding, usually your platelet count is high, because your body is trying to stop the blood loss by making the blood clot.

If you suspect Humira, then, have the doc check your blood counts, and see if Humira is causing an unusually high platelet count (thrombocytosis) or something like that. If the platelet count is high, and you have no bleeding, then it could point to Humira causing the high platelet count.

Hey, I maybe wrong, but it's my theory, and I'm sticking to it. :-D

I am so glad they found it, and took care of it! What a scary thing to happen! Glad you're ok.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/11/2009 10:08 AM (GMT -7)   
How did I know? It's kinda a complicated story...I'll try to give you a condensed answer: I had a cough caused by a virus for about a month. I woke up one morning with pain when I took a deep breath. When the pain wasn't gone the next day, I went to my PCP, who said it was a pulled muscle caused by the cough. They prescribed flexeril and naproxin to help get rid of the pain. I took the meds, and later in the day, the pain was getting worse, so I called the dr's office and spoke with the dr on call, who suggested going to the ER because it could be something worse if the flexeril didn't help at all. I went to the ER and had a chest xray and VQ scan (nuclear medicine study for clots) and both came back normal. Went home from the ER, but was called back and they said one of the studies was misread and they wanted a CT. They gave me steroids and benadryl since I'm allergic to contrast for CTs, and found clots on the CT, so I was admitted.

It was one of the most painful experiences I've ever had, and I've had 2 major abdominal surgeries and multiple obstructions, so that's saying a lot. It hurt to move, breathe, cough...everything. I hope none of you ever have to experience it.

As for being in a crohn's flare....my GI doesn't think I am in one, but I do...haven't had a solid bowel movement in months, and frequently have nausea and pain after eating. The thing that complicates it is that I've had tests done and they haven't found anything on a small bowel series or CT of my abdomen...so I'm just dealing with that and being careful of what I eat. The PA at my GI's office told me "there's nothing physically wrong with you" which really made me mad. I have to think that even if they did suspect a flare, I'm on Humira, and they wouldn't change anything besides diet since my GI is very anti-steriods unless they're absolutely necessary.

If I had a chance to go back and decide whether or not to take birth control...I would probably still take it because I too had bad cramps, headaches, etc. I'm not looking forward to having my next period not being on birth control, but now that I've had this happen, there's no way I'll ever take them again :( I wish I could...or that there was another option that controlled PMS and kept my hormones in control without the risk of clots...
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 10/12/2009 12:26 PM (GMT -7)   
Wow! I didn't know that Crohn's Patients were prone to be/have hypercoagulation...I've never had a clot but, years ago had genetic testing done and I have The Factor Five gene mutation which is a disaster for clots! So I have allot stacked up against me! HEhehE......
Something new I learned today!
 I'm sorry I have nothing knowledgeable to tell you but, I hope you feel and get better real soon!
Dx w/ Crohn's Disease May 2000
Asacol 400MG
Small Bowel Resection November 2008

Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG


chappie1967
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/12/2009 6:40 PM (GMT -7)   
Hi Guys,
 

I was diagnosed with Crohn's 20 years ago and since then have only had two flare ups, but in recent years I have had a lot of Crohn's additional symptoms, including blot clots in my lungs.  I noticed on occassion over the last few years I was getting shortness of breathe and a weird pain in my chest.  I had x-rays but nothing was found.  Then last year I went to bed with the usual discomfort and woke up in a lot of pain and not being able to breathe properly.  This got steadily worse so off to emergency.  By the time I was in emergency I was in a lot of pain, and had a lot of problems breathing.  The diagonised me with blot clots in my lungs.  I have not family history of blood clots and since then I have found out that blood clots are on the list of crohn's issues. I dont seem to get the flare ups very often, but seem to get a lot of peripherial issues, which seem to be inflamation related.

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