? for those with blood clots

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woahitslibby
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/30/2008 8:58 PM (GMT -7)   
hi everyone, I've been reading this forum for a few months now and have found all your info to be very helpful and was hoping you might have some answers for me today :) sorry if this gets long...

I've had indeterminate ibd for the last 6 years - almost 5 years of remission before I suffered my first flare. When I had the first flare I was in my first semester of college so I decided to ignore it hoping it would go away - it didn't and 2or3 months later I landed in the hospital with a severe blood clot in my right leg. it was attributed to the flare and my severe dehydration and I did the standard 6 month course of coumadin and also a course of pred. I was mostly better for around 7 months but never reached complete remission. I then had another flare and after a week of being sick went to the hospital. There it was discovered that I had a blood clot on my brain and I have been on coumadin ever since (this happened in 10/07).

The last time I saw my hematologist I was pretty sick and we decided I would be on coumadin indefinitely but now that I feel better I'm anxious to get off of it. My veins aren't nearly as good as they used to be (from the constant blood draws) and I need them to last for many more years(I'm only 20!) I guess the theory with the clots is that they only happen in severe flares so as long as I'm not severely flared and dehydrated I'm fine. My fear though is that if I stop the coumadin I could have a bad flare and if it doesn't respond quickly to meds that I could clot again.

sooooo I was wondering if those of you who had had blood clots now took any kind of measures to prevent future clots?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/30/2008 9:30 PM (GMT -7)   

EVOO aids with blood clots...

http://archive.newsmax.com/archives/articles/2007/8/21/91050.shtml

 

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 7/1/2008 12:36 PM (GMT -7)   
Sorry to hear about your problem.  I have not had blood clots, but I know that Vitamin E works in a way that prevents blood clots.  If you're having surgery, they ask you to stop taking Vitamin E beforehand so that it will not effect your blood clotting.

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 7/3/2008 6:08 PM (GMT -7)   
I got my first blood clot in my knee when I was 21 and in college and did 3 months of coumadin treatment.  They took me off and I had a near-fatal stroke that summer and needed brain surgery.  I also developed multiple clots in my liver and am therefore indefinitely anticoagulated. 
 
I'm in grad school now and the coumadin doesn't really bother me anymore since I keep a stable diet and avoid risky behaviors.  Also, I only get my blood checked once a month (at a clinic) and they do a finger-prick instead of blood drawing.  If you can find a place that does this, I highly recommend it.
 
There's a good chance that you have a true clotting disorder (protein S or C deficiency, etc) since you are experiencing multiple clots.  These disorders are more common in people with ibd than the normal population (according to several scientific publications).  I am sometimes anxious to stop the anticoagulation as well (only 24 yrs old) but I know, realistically, it is not worth the risk. 
 
I know for a fact, though, that you CAN NOT up your intake of vitamin K as suggested by Kasper because this increases clotting (and interferes SEVERELY with coumadin dosage).  It sucks being on a blood thinner, especially when my crohns is causing GI bleeding, but it would be much worse to be back in the stroke unit for another month of my life not knowing if I'm going to survive. 
 
In the end, you need to discuss this at length with your doctor if you are considering stopping anticoagulation.  In my case, I'll be visiting my coumadin clinic once a month for the rest of my life. 
 
Good luck & be careful!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/3/2008 6:23 PM (GMT -7)   
I have to agree with dodger84 on this one. I have not had a blood clot but had really bad atrial fibrillation (rapid irregular heartbeat) and they put me on Coumadin for about 6 mos. I hated it too, but you have had multiple clots and I think it would be best to stay on the medication. I did not stay on it (I am 50) for the same reasons you want to quit. BUT......I never had any clots mine was just for prevention purposes in case I had developed a blood clot from the A-Fib. I think you are better safe than sorry at this point. But I sure do understand what you are going thru. If we could do the baby aspirin, it would be okay for us to use instead of the coumadin, but any kind of NSAID (aspirin, ibruprofen or aleve) are big no-no's for us.

Welcome to Healingwell and we look forward to hearing more from you.

Good Luck,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


woahitslibby
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 7/3/2008 8:18 PM (GMT -7)   
thanks for all the info! I will definitely look into a coumadin clinic- once a month finger pricks sounds WAY better than the every other week blood draws I'm doing now. I actually had all the genetic testing done for clotting disorders but I didn't have any. They tested me after the first clot and then tested me again after I had the second one because they were sure that if I had two there should be something else going on but nothing that they found. I have an appointment with my hematologist this summer and I plan on discussing stopping with him but if he thinks it necessary to stay on I definitely will - you're right I would MUCH rather get blood drawn then end up in the hospital with another clot.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/3/2008 8:41 PM (GMT -7)   
Hey Libby . . .

There are a couple of pretty simple blood tests (maybe your doc already did them) that look for certain antibodies that cause thick, sticky blood. These antibodies are common in Lupus. Not trying to scare you . . . but these auto-immune diseases like to overlap.

The tests are: Anti-phospholipid antibodies . . . and Anti-cardiolipid Antibody

These are the the cause of many strokes and heart issues, as well as miscarriages, in women with Lupus.

Just a thought.

And I agree with the others . . . . two blood-clots would have me testing as often as necessary.

Hugs to you !!! . . . . and

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/29/2008 12:26 AM (GMT -7)   
Hi Libby!
I've been diagnosed with UC BUT being the unique person that I am (according to my mother), I've had blood clots AND a current fistula for 8 years to which a new surgery using a plug failed 2 weeks ago. Apparently flare ups can cause blood clots (DVTs) and that fistulas are not wholly and solely the domain of Crohns and can be caused by UC. I have had about 10 or so years of misdiagnosis with practically everything before keeling over in Jan 2005 with bleeding.

Re the blood clots, when you have a flare up, it releases stuff into your bloodstream that makes you predisposed to getting a clot (that means everyone who has CD or UC). Yay me got 3 clots in the left calf muscle, 1 in the left leg and a great big one (known as a Pulmonary Embolism) in the right lung, all at the same time in November 2007.

I did not have the classic symptoms, only a calf muscle that would swell the MORE I walked. Thank God for the pharmacist who I went to after a week to ask what I could rub on it who advised me it sounded like a clot and to get to hospital. The hospital was going to send me home due to the non classic symptoms and to come back the next day for an ultrasound. Luckily one of them bothered to take my temp which was high and to which I did not feel feverish. They did the ultrasound, found out the clots in my leg, gave me warfarin and clexahn injection in my stomach. OMG, run if they say clexahn to you. The pain and bruising is incredible. I then got told I could take home the injections and give them to myself for 5 days. You can imagine the look I gave the Dr....

Anyway, came back the next day and mentioned I felt like someone was pressing their hand against my chest. They did a lung scan and found the clot, making them promptly admit me. I was on the warfarin for 6 months but in that time, had another flare up. Reason being is that last year I had 4 flare ups, making the Dr change my medication to Colazide 9 x 750mg daily. I then had to wean down to 6 x 750mg in December and then in Jan 2008 to the maintenance dose of 4 x 750mg. This wasn't strong enough so starting flaring and started small bleeds. Being on blood thinners, it is imperative you go to the hospital asap and tell them you're on them. You should see how fast they respond. I was put on pred to slow down the flare but unfortunately it increased the effects and my blood thinned to 4.8. I don't know what your blood has to be thinned to Libby but I was supposed to be between 2 & 3 but my INR was never stable and would bounce around within days.

Because of the pred, after a week, I started bleeding and wouldn't stop. Bleed for about 36 hours and luckily collapsed unconscious in front of a nurse. The human body holds about 3.75 litres of blood and I had 7 litres of blood and 1 litre of plasma plus copious litres of saline being pumped into me while it was all coming out the other end. The Drs thought they were going to lose me and admitted to me that they were just trying to keep up with the blood loss. Anyway, to shorten the story, I was there for 2 weeks while they reintroduced the warfarin, put me back on 6 x 750mg of Colazide and started me on 6MP, the same drug they give leukemia patients.

If you have to be on blood thinners for life, DO NOT CHANGE YOUR DIET to thin your blood, otherwise you will be having twice a week blood draws to get your INR right rather than stabilising it and getting down to monthly or even 6 monthly blood tests. Thankfully I was given a booklet about how much Vit K certain foods, herbs and drinks have in them. You need to keep between 250 to 500 micrograms of Vit K in your diet each day. Exceed it and it affects your INR and subsequent comaudin dose.

I don't have my booklet on me at present but do NOT take supplements of vit K, large doses of vit c, cranberry juice, chamomile or green tea. A cup of cooked spinach is 440 micrograms and 1/2 cup of lettuce is like 100! Eating green vegies in great quantities is a no no as well. You can still eat salads and green vegs but only in small quantities. Also DO NOT TAKE fish oil supplements, under any circumstances and regulate yourself to no more than 200ml of alcohol a day. I know that this may scare you but once you get it under control, you can live with it. I'll look up my book which was my bible in vit K counts. You need to remember not to binge drink or eat, and definitely no dieting. If you love a certain food that is high in Vit K, take it regularly so that they can adjust your dose to make you stable. The worse thing is to pig out on something one week and then not the next.

Since mid May I have been part of a global stage 3 clinical drug trail. The drug is Rivaroxaban and it's to prevent reoccurrences. I could be on the placebo but the way I'm reacting to it (I get adverse drug reactions), is exactly the same way I did when first put on warfarin for the first 2 months. This new drug will hopefully cross all the ts and dot all the is as it's designed that you only have to take 20mg each day and NO blood tests (unfortunately being on the trial, they suck the blood out of me every 3 weeks) as the body regulates itself. Best of all, if you need surgery, it gets out of your system within 36 hours as opposed to warfarin and coumadin which can take up to 60 hours.

I hope this helps and will get my vit k booklet count for more info.
Cheers
Bron

woahitslibby
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 8/29/2008 8:49 AM (GMT -7)   
Wow, thanks for all the info Bron!
When I had my blood clot in my leg my only symptom was swelling too, I noticed it was a little swollen one morning and by the next morning it was at least twice the size of my left leg! They kept asking me if it hurt and I kept telling them no. I'm lucky enough not to have much pain with my ibd either, so I guess that's one thing I can't complain about.

I've never heard of clexahn, but I had a scope done a few months ago and since my GI didn't want me on blood thinners for the procedure I had to give myself heparin shots. It was one shot twice a day in the stomach and it HURT. I only had to do it for a few days but at the end my stomach was a mess of bruises. My hematologist told me that I could continue on the heparin instead of coumadin if I wanted, I probably gave him the same look you gave your doctor.

I definitely don't binge drink or diet and I try to eat a fairly consistent diet but I've always found eatting the same amount of vitamin k everyday to be challenging. In the hospital they gave me a long list of foods with v k in them and I was like, I eat a lot of these foods, but I can't eat the same amount of each of these foods everyday. I finally settled on just trying to eat a few pieces of lettuce or broccoli a day and not eating a huge plate of any of them but my INR still bounces around some.

I'm really interested in the Rivaroxaban, that sounds like a very excited drug. I know if its still in clinical trials that it could be a while before it would be approved but if I'm going to be on an anti-coagulant forever, I guess I have plenty of time to wait. :)
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


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/29/2008 7:46 PM (GMT -7)   
Hi Libby
My INR kept bouncing around due to the pred as everytime I weaned down to a lower dose, the INR smashed. So after 2 months they started to get my INR right and I only had to go once a week for blood testing, and THEN the flare up happened and so for 4 months I had to wean off the pred while they sorted out everthing else.

I've only had heparin via an iv drip. Had to have the clexahn recently after surgery as the vascular surgeon ordered it. As he said, he has to take it I might be on the placebo and so, once you've had multiple clots, the chances are now higher to get them again. Plus, after 6 months of blood thinners, they found that I still had one in my left calf. The bruises as you know are spectacular and I think, not having much fat on me (lost a stone in hospital in Feb), they hurt even more.

I understand what you mean re the food. All the foods I like have vit K, eg mushrooms, corn, broccoli, tomato, lettuce, asparagus, etc. My poor Mum, whenever I visited, she was like, can you eat this, what about this, etc. She asked her GP what could I eat and he said 'fresh air' is the only thing that doesn't affect the INR.

One thing you'll never be able to take again since getting clots is no contraceptive pill or any hormonal stuff. HRT has a bad rep anyway regarding menopause but if you've had clots, it's a definitely no no. Even family members shouldn't take it if anyone in their family has had clots.

Because of all the clots I was a bit concerned about going off the warfarin after 6 months and so that's why I got referred to the vascular surgeon re the drug trial. It's just so simple to take with food and I take it whenever I eat dinner. Not like the warfarin which has to be at the same time each day or within 2 hours. The way I see it, if it goes ahead and gets approved, I'll definitely be putting my hand up to stay on it for life :)

Cheers
B

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/30/2008 8:16 PM (GMT -7)   
Hi Libby. I didn't know about others with clots either. I had an incident january 08. I was 7 months pregnant. I was waking up for about a week feeling as though some one had been sitting on me while I slept. My left arm was in excrutiating pain and didn't know what it was from. I also shortness of breath and chest pains. The way I usually deal with things, I do it myself because doctors look at me funny because I have so many problems. They make me feel as if I am a person who thinks that everything is wrong with them. So the pain got to me and I finally spoke up to my gyno who was over seeing my pregnancy because I was so sick. She instantly said that something wasn't right and it sounded like a blood clot. I was visiting my sister in a city an hour away from my hometown because I had a few doctors appointments and it was convenient so it really sucked when she told me I had to go to the hospital and get a chest xray. My gyno wrote a letter that she sent with me to Emerg. I waited 5 hours before anyone saw me. Even with a note stating I had a possible pulminary emballism they didn't prioritize me. At the time I wasn't really scared because I was trying not to think about it. I ended up staying in the hospital for 4 days. Its soooo sucked. The doctors weren't really telling me anything. My lovely bf stayed the whole time with me. I think he was more scared than I was. The chest xray showed 3 blood clots. I didn't realize that Crohn's causes blood clots. My doctors told me it was also caused by my pregnancy plus inflamation from crohn's. When I was in the emergency room the nurse gave me a shot of anoxoperin. I stayed on it from January 11th to March 7th. I had to give myself shots twice a day that whole time. It was super hard to do because I hate needles. I would have taken pills but it wouldn't have been good for the baby. She came out all good. I wanted to smack the nurse that gave me my first shot because she was so ruff with me. I had only gained 11 lbs the whole pregnancy and there was no fat on my belly to pinch for the needle and I ended up with a huge sore bruise. After I had my baby they put me on IV blood thinners, heparin. I stayed a week in the hospital only because they wanted to regulate the blood thinners before I went home. After the week went by they realized that they could have sent me home a lot sooner. A week with an IV in your arm starts to hurt. After they took it out it felt so weird. I had gotten used to working around it. I found myself doing the same all though it had been removed. When I got home I was on warfarin. Weekly blood tests every wednesday. Ouch my veins are thorougly woren out. The whole time I wasn't at a theraputic level so it was pointless to have even taken it. Like someonelse said the levels are suppose to be between 2 and 3 to be helpful and I was always at a low 1. Sorry for the long babbling and all over the place reply, but hopefully we don't get any more blood clots.Big smiles and huge hugs.
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 8:44 PM (GMT -7)   
Holy dolikins Chronicallyill, you've certainly been in the wars! Congrats on the baby. I too had a rough as guts nurse who initially whacked the stomach injection into me - the bruise only faded after 2 months and was the size of my palm. Was probably good she was rough as I refused to take the needles home and they said to come in each day to have it done. That's when I mentioned the chest pressure the next day and they found the PE.

I only found out about the 'oh, it's known' link between flareups and DVTs/PEs earlier this year from the GI. The info I was given last year at the hospital had nothing about the link, only the A&E Dr and a poster in the ward mentioned Inflammatory Bowel Disease as a possible cause. I waited 4 hours at the A&E and was going to give it another 15 mins before leaving when they came and got me. I too didn't realise how serious having a PE was until only a few months ago when I was ordered to have the clexahn after recent surgery, apparently 1 in 4 people with PEs die.... I'm glad I was ignorant at the time as I believe being calm about it worked for me, and yes, being stuck in hospital when you feel well does suck :)
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/30/2008 8:47 PM (GMT -7)   
Just wondering - did they give you that clot buster tPA or tissue plasminogen activator? It is usually used for stroke, but I can't help wondering about keeping a Crohn's patient on blood thinners indefinitely. If you start bleeding during another flare, it might be dangerous. If you are in danger of multiple clots like dodger84, no question, use the coumadin. If you are only in danger during a flare, maybe you could start coumadin then? Things to ask your GI...

woahitslibby
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 8/30/2008 9:07 PM (GMT -7)   
My dad had actually had a PE 4 years before I got my clot so the instant that I got to the hospital and they said "blood clot" I went into full freak out mode.
When he had his my whole family was sitting around watching tv and he mentions that he doesn't feel well, which is a weird thing for him to say as he really never complains about being sick. After at least an hour of him trying to convince himself that he was getting the flu, my mom called an ambulance since at that point he really couldn't breath to well and we were afraid he was having a heart attack. Talk about being scared out of my mind, I was 14, had been diagnosed with IBD 6 months earlier and now my dad is in the hospital being told that he was "lucky to be a live"! The whole time I was in the hospital for my clot I literally sat with my hand over my heart to make sure that if my heart started doing anything funny I would know immediatly.
Anyway after the PE they did the genetic testing and he does have a mutation that increases his risk. They decided that his clot was mostly due to a broken leg so he decided to go off the coumadin with the understanding that if he had another clot he would be on it for life. I mean I think I've pretty much resigned myself to being on coumadin for life but it bothers me a little that I have to do it forever because of the IBD, which has really only a vague connection to clots, when my dad, who has a well known increased rick doesn't have to do anything. I guess I'm just not as big a risk taker as he is lol.

Oh and my doctor did tell me that should I ever decide to have kids that I would have to see a lot of doctors and it would be a rick since of the increased clotting rick during that time and also because of the ibd. Yet another scary thought :(
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


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 9:41 PM (GMT -7)   
I also had the hereditary testing done which was negative. Your Dad was so lucky. Recently on the news here a 19 yo died 4 hours after fainting. She had only started taking the pill 4 months earlier and they now believe she had a higher risk than most in getting PEs and the pill tipped the balance. I know what you mean about the hand on the heart. I twice had weird episodes whilst in hospital. The only way I could describe it was feeling like I had overimbibed alcohol and had that 'I'm about to pass out' feeling and was trying to fight passing out. I stared at the ceiling and mentally told God that there was no way I was going to die as I hadn't been a povo poor student doing a PhD without getting the bloody thing finished and passed.

That feeling of trying not to pass out scared me. As well I had heaps of pain in my right side when breathing out a few days after diagnosed. The Dr there in the hospital told me (in layman terms) that where you have the PE, that part of the lung 'dies' as no blood is circulating in that section/tissue and the pain I was having was my body letting me know that the warfarin and clexane (enoxaparin sodium) were starting the blood to circulate. Whether that is the correct info I don't know but it made sense.
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 

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