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Posted 7/30/2008 3:33 AM (GMT 0)
I was reading that we are at an increased risk for developing blood clots (seriously, what are we not at risk for?). Anyone know how common that is? Just thinking, since I take birth control pills, if I'm really increasing my risks. I take them because I also get terrible messed up periods, and ovarian cysts. So they really help me. I'd say I even feel better tummy wise since taking them. I've been on them for years with no problems. My GYN knows I have Crohn's, and actually felt it might help me (since I have history of anemia also). Infact all my docs know I take them, and have never mentioned an increase risk. Kinda irritates me if it there is one!

Yes, I'm worrying again. Someone slap me. LOL nono

Posted 7/30/2008 3:58 AM (GMT 0)

Slap, slap :-)  Yes, I understand that there is a somewhat increased risk - BUT - consider the alternatives. I don't know about you but my menstrual periods ALWAYS aggravated my Crohn's symptoms! The ER docs were the first to notice it and bring it to my attention when I ended up in ER every month bloated and in pain and vomiting. It was an ER doc who first suggested that I take birth control pills to STOP my periods. (This was back in the late '70s).

Discuss this w/your doctor and come to an informed decision which you will be more comfortable living with.

Posted 7/30/2008 4:07 AM (GMT 0)
Thank you for the slap! Much needed every so often! :)

I know, the alternative really isn't good for me. I actually do skip my periods, and have them maybe 2-3 times a year because they are so bad. And yes, so were my Crohn's symptoms when I had them! Always would feel sick, crampy, and have D during the week before and the week of. So the pill has been wonderful for me. I'd hate to go off of them. I actually asked my GYN if she still felt it was safe for me to take them back in January, if I had anything further to worry about. She wasn't concerned she said. So all my docs seem ok with me taking it, I think they view the benefits as being better then the risks. Just need to STOP reading things online, and scaring myself. LOL
Posted 7/30/2008 12:47 PM (GMT 0)
Well, I'm not so sure you should stop reading things online. Yeah, some of them will give you pause and cause some worry. But those things that do you ask for personal experiences or opinions as you did w/this issue. There are bound to be a thing or two you read about that will be of benefit for you to try or something that will help you avoid making the wrong decision.

A good example is how close I came to starting Remicade and the resulting new info coming out about 'cade and lung problems. I was scheduled for my first infusion, I had visited the infusion center, I had my pred script for the pre-infusion. I FILLED that script. The VERY DAY before I was scheduled for that first infusion I read about the clinical trial of Remicade FOR COPD and its being stopped earlier than scheduled. I happen to HAVE COPD. I contacted the company conducting the trial and the company making 'cade but neither would tell me WHY the trial was stopped early altho one of them suggested I have my doctor make the contact and ask the question. Instead I cancelled the infusion.

Hey, what can I say? God looks after fools.
Posted 7/30/2008 1:54 PM (GMT 0)
I'm one of the people who the increased blood clot risk has affected :(  Oddly, I did a research paper on the connection between Crohn's and increased clotting a few months before my first clot and about a year before my stroke (at 22 years old).  So when the doctors were telling me they never heard of the connection, I was citing some of the scientific papers I read for the research.

But what can you do about it?  Sure it's affected my life - I need to be on blood thinners now (which sucks when I have bleeding symptoms by the way) but I can't let that get me down!  In my opinion the best advice is to continue what makes you feel healthiest but be smart and get checked out if you ever do run into any potentially dangerous symptoms.  I wouldn't live my life being scared of what could potentially happen.  I KNOW that I'm at risk and that's not keeping me from being happy in the present :)

Stay healthy!

Posted 7/30/2008 4:39 PM (GMT 0)

CrohnieToo said...
Well, I'm not so sure you should stop reading things online. Yeah, some of them will give you pause and cause some worry. But those things that do you ask for personal experiences or opinions as you did w/this issue. There are bound to be a thing or two you read about that will be of benefit for you to try or something that will help you avoid making the wrong decision.

A good example is how close I came to starting Remicade and the resulting new info coming out about 'cade and lung problems. I was scheduled for my first infusion, I had visited the infusion center, I had my pred script for the pre-infusion. I FILLED that script. The VERY DAY before I was scheduled for that first infusion I read about the clinical trial of Remicade FOR COPD and its being stopped earlier than scheduled. I happen to HAVE COPD. I contacted the company conducting the trial and the company making 'cade but neither would tell me WHY the trial was stopped early altho one of them suggested I have my doctor make the contact and ask the question. Instead I cancelled the infusion.

Hey, what can I say? God looks after fools.

Wow, that was lucky! Whew! I get a lot of good info online too. I have to be careful though because I tend to read a worse case senario and right away think that must be what I have, or it WILL happen to me! I've had such bad luck with my health, starting out so young, it's turned me in to a bit of a hypochondriac! I just end up adding worry to my plate that I really shouldn't be doing!
Posted 7/30/2008 4:46 PM (GMT 0)

dodger84 said...
I'm one of the people who the increased blood clot risk has affected :(  Oddly, I did a research paper on the connection between Crohn's and increased clotting a few months before my first clot and about a year before my stroke (at 22 years old).  So when the doctors were telling me they never heard of the connection, I was citing some of the scientific papers I read for the research.

But what can you do about it?  Sure it's affected my life - I need to be on blood thinners now (which sucks when I have bleeding symptoms by the way) but I can't let that get me down!  In my opinion the best advice is to continue what makes you feel healthiest but be smart and get checked out if you ever do run into any potentially dangerous symptoms.  I wouldn't live my life being scared of what could potentially happen.  I KNOW that I'm at risk and that's not keeping me from being happy in the present :)

Stay healthy!

Goodness how scary dodger! Were you flaring when the blood clot occured? I wonder how many doctors are really aware of all of our risks. I also wonder how big the risk really is, because if it's big enough I wonder why they don't put us on blood thinners during a flare (bit of a catch 22, because we do have bleeding problems to, I know I do!).

Which is why I worry about my being on birth control pills though. Although I have yet to come across anything saying we for sure shouldn't take them. Infact I've seen some of the opposite to be true, like they recommend good birth control while on certain treatments (would be dangerous otherwise for a pregnancy). I also have controlled high blood pressure, and my GYN said because of all my health problems she doesn't want me to get pregnant again, and recommended I stay on bc for that reason as well. But then again I look at my risks, and think "Gee are they trying to kill me here or what?" LOL I'm assuming if my blood pressure wasn't undercontrol she'd feel differently about that though.

Something to talk with my GYN again for sure. Unfortunately I can only see her once a year, without going through the whole referral thing again. Stupid insurance. So that means in January. Until then, good advice, just knowing any warning signs, and try not worry!

I really admire your postive attitude with all you've been through. Something to strive for!

Posted 7/30/2008 6:30 PM (GMT 0)
We are at risk, now if you have whats called factor 5 gene you are a very high risk. I myself have that and have had clots in my lungs one time and 4 times in the calf of my left leg.You can ask for a blood test, maybe that would make you feel better about.

Posted 7/30/2008 7:15 PM (GMT 0)
Oh, I didn't know they had blood tests that could tell you that, or that there were even different gene factors. Might really be worth bringing up to the doctors, thanks!
Posted 7/30/2008 11:12 PM (GMT 0)
Yes, there's another genetic blood clotting problem that can be tested for: von something or other.
Posted 7/31/2008 1:57 PM (GMT 0)
I was not flaring at the time of my clots.  The first one in my knee happened after I tore my ACL (playing dodgeball in college - guess I deserved that one).  They thought it was just trauma-induced.  Then the one in my brain (and 5 in my liver) happened & put me in the hospital for over a month (no flare here either).  Fortunately, I was on high-dose steroids in the hospital which put me into complete remission with my Crohn's symptoms for 6 months (which was great because I started grad school a month after getting out of the hospital and did not think I could deal with being sick at the time).

They think I have protein C deficiency but are unsure because they did the blood tests after I already started blood thinners, which screws up the results.  They're too afraid to stop the anticoagulation just to get a more accurate test because regardless of the cause, I will have the same treatment (warfarin) so there's no point taking a risk.  Doctors suggested that my parents get tested but they refuse because neither wants to be "responsible" for giving me my health problems.  It's extremely annoying because I would never blame anybody for genetics - I'm just thankful I'm still around!

Anyway, there is a basic panel of tests that can be done to determine if you have the highest risk genetic problems.  If you are really paranoid you might ask your doctor to ease your mind. 

 

Posted 7/31/2008 4:23 PM (GMT 0)
Wow dodger, that's just all amazing what you went though. I'm glad your still here too! I agree about them not risking the tests, forget it, not worth something else happening to you!

Part of me feels if I had some kind of genetic problem it should probably of surfaced by now, I'm going on 31. But who knows. My Grandpa died of a clot that went to his lung, but that was after major surgery and bed rest. I think that is PART of what may be increasing our risks. We have high rates of surgery and bedrest. That has to be part of it anyway. Scary stuff either way!

But I'm sure glad you are doing okay on warfarin!
Posted 8/1/2008 1:17 AM (GMT 0)
Hi Jen when I had my resection surgery they had me on blood thinner needle once a day for a few days till I was walking really good. So some surgeons out there are aware of the problems with clots. I know you must be extra worried because of your Gramp.lol gail
Posted 8/1/2008 3:20 AM (GMT 0)

Hi there,

I just wanted to add, I have had blood clot problems and it was actuallythe reason why the doctors got serious and finally able to Dx me. I had a retinal vein occlusion (blood clot in the back of eye). At the time of my blood clot I have having horrible crohns symptoms and lost tons of weight but no one knew what was wrong with me. When the blood clot happened after going to many doctors in this area to find out exactly why, I was eventually referred to mayo clinic. My platelets were very high and they said that might have been due to the inflammation going on in my body. My doctors recommended I stay off birth control pills because my my clot. However, I became pregnant with my second child(lol) about 5 years with no b/c..When I was pregnant with him I became increasingly concerned with getting another clot since pregnancy also puts your body in a hypercoagulable state. After I had some tests done and there were lots of 'weird values' coming back on some of the clotting factor tests..I was given the option to take lovenox injection through out my pregnancy and I did. A few months after my son was born I went on REmicade and I was feeling wonderful!!!.. I was very sick for soooo long and the pregnancy just drained my body. After being on remicade for many months I took the clotting factors tests again as well as a normal CBC to show my platelets and for once in 7 years ALL my values were NORMAL!!!.. So I really do think there is a flare/increase blood clot corralate.

Posted 8/1/2008 4:11 AM (GMT 0)
I have a mini flare every month with my period. I have also noticed since the Crohn dx that I have some pretty huge clots during that time of the month. To my knowledge except prior to surgery I have not been tested for blood clot risk. I never could take oral birth control because of severe leg cramps. I know most of us that have had a resection either were put on blood thinners during the recoup period and/or devices that massage the lower extremities and improve circulation to the legs/feet to prevent blood clots. I think this would be standard procedure for that type of major surgery though. Interesting post. It does give one something to think about.
Posted 8/1/2008 4:39 PM (GMT 0)
Thank you for sharing your story Danielle! I think it really is food for thought. Something we all should at the very least be aware of, and keep an eye out for. Like everything else with this darn disease, it's hit or miss, and I guess something we can't worry about. Who knows who it will strike!

I agree iwth you broomhilda about the blood thinners and major surgery. I know people that took such precautions with major surgery that didn't have any other health risks. I think in some cases that's why we are at a higher risk anyway, since a good % of us have to have major surgeries. That alone jumps our risks. Plus many of us take to bed when we fall ill with a bad flare. Another thing that alone will increase our risks!
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