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Blood clots - BEWARE!

T

twilight87

Hi,

My husband was diagnosed with UC in November 2010 at the age of 22 after being rushed into hospital. He first fell ill 2 months before and was so ill he was in intensive care for a week. He struggled a lot to control his condition, he was in and out of hospital, on many types of medication and underwent many tests. In May 2012 he was started on yet another new medication and we had his diet monitored and for the first time since his diagnosis, he began to co trol his UC - just in time for our wedding in June 2012.

However on christmas eve 2012, he woke up to a blinding headache and taken to hospital 2 days later with suspected mengitis. Tests for meningitis were negative and so he was taken for an mri. The scan showed a massive blood clot in his brain which had caused a bleed. He was started immediately on blood thinners but this caused the bleed to worsen making him seize. 4 days later after many procedures and an operation to remove his skull to ease pressure, he suffered a massive stroke and was pronounced brain dead. We said our goodbyes and turned off his life support.

We thought our biggest concern with his condition would be losing his bowel to a colostemy bag. Before his clot diagnosis, neither of us knew that IBD increases the risk of clots. We need to make more people aware. I am currently fund raising for crohns and colitis and I intend to make more people aware of the risks.
 
B

brooke206

I too suffered a stroke whilst having a flare up but obviously not as severe I too was unaware of the risk and applaud your efforts to make sure that this is brought to the attention of both sufferers and healthcare proffessionals I'm not sure where you're finding the strength from
 
Nyx

Nyx

Moderator
I'm so sorry for your loss. I am glad however that you're getting awareness out there. I developed 2 blood clots in my lungs during my surgery for my stoma and was in ICU over Christmas in 2009 because of them. The blood thinners eventually did their job, but I had no idea that surgery could cause them. I'm not sure if there are any preventative measures though.
 
D Bergy

D Bergy

That Is really sad to lose someone that way.

Thick or "sticky blood" is a problem for most people with Crohn's, but I am not sure how many are aware of it.

I take various supplements to prevent problems of this nature.

It is good to get the word out.

Thanks for the very personal warning.

Dan
 
I

Ihurt

Location
United States
I am so sorry for your loss. It is very scary indeed. I have been sick chronically for the last 9 years. I was tested by a doctor with a very comprehensive blood panel. I was told I have high fibrinigens in my blood which ALL people with chronic illness have. These fibrinigens make your blood thick and this puts people at risk for developing blood clots. Anyone who has any disease that is chronic has a higher risk of getting blood clots. Unfortunately there is not much you can do about it. I mean You can take low dose asprin( but many on here could not do that as it would aggravate the bowels). There are some natural things that can help but no western med doc is going to recommend them. My good friend who also has chronic illness had a pulmanary embolism a couple years ago. I mean it is scary. There are some foods that have anti-inflammatory actions that can help some too.

Also I was wondering, was your husband on any meds when this happened?? A lot of medications have tons of side effects as well... I am so sorry for your loss, my heart goes out you...
 
I

Ihurt

Location
United States
My son had knee surgery last year and his orthopedic surgeon had him taking asprin three times a day right after the surgery to prevent blood clots. My son is a big boy so he is more at risk as well from what the doctor had told me. He did good while on the asprin. Unfortuately I dont think people with bowel issues can take asprin though so that sucks... but maybe it would be ok to take them right after any surgery as a percaution ( maybe while taking some high doses of zantac to protect the guts.... I dont know, it is just a thought. I mean I have always known any kind of surgery puts anyone at risk for developing a blood clot. It is just more so for a person who has chronic illness...







Nyx said:
I'm so sorry for your loss. I am glad however that you're getting awareness out there. I developed 2 blood clots in my lungs during my surgery for my stoma and was in ICU over Christmas in 2009 because of them. The blood thinners eventually did their job, but I had no idea that surgery could cause them. I'm not sure if there are any preventative measures though.
Click to expand...
 
D Bergy

D Bergy

I take Ginger, Tumeric and Krill Oil to thin my blood. These supplements have many other benefits besides this. One big benefit is they are all help quell inflammation.

I also have evidence that these do in fact thin the blood. After my last surgery the surgeon asked my wife if I took a daily aspirin. She said that I did not. He said when he was stitching everything up, I kept seeping blood. He said it was not a problem but it was not typical. I had stopped taking the supplements a few days before, but apparently the effect had not left yet.

Some supplements thicken the blood also, so you have to know that ahead of time so you can counteract that effect. One used here is vitamin K. Anyone taking it should be aware of this.

Dan
 
Tesscorm

Tesscorm

Moderator
Staff member
Twilight87, I'm so very sorry for your loss! :heart: thank you for sharing your story and for bringing attention to this risk.

David, while looking for more info on blood clots, I found that there was no Wiki entry on clots and the risks of clots with IBD. Could an entry be made on the Forum Wiki, even if it only includes a link to this thread? This thread could provide some initial info for anyone looking for info on clots.
 
T

twilight87

Thank you all for your kind messages.

Ihurt: His medications were 200mg azathioprine, 6g pentasa and 2g asacol foam enema.

David: i would love to add him to the candle room, thank you.

xx
 
David

David

Co-Founder
Location
Naples, Florida
Tesscorm said:
David, while looking for more info on blood clots, I found that there was no Wiki entry on clots and the risks of clots with IBD. Could an entry be made on the Forum Wiki, even if it only includes a link to this thread? This thread could provide some initial info for anyone looking for info on clots.
Click to expand...
Certainly. Are you or someone else willing to start the wiki entry?
 
wildbill_52280

wildbill_52280

so sorry to hear of this,
thank you for telling us this story.


this is my opinion based on my own management of my own blood clots and reading lots of science:

it is the oxidative stress from chronic inflammation that interacts with LDL that is responsible for the blood clots, soluble fiber supplements can be very helpful and protective for people with IBD to avoid blood clots, Such as Apple pectin, inulin, and psyllium, from 4-24 grams per day. also, it is the saturated fat that raises LDL cholesterol. Saturated fat raises ldl, that then can become oxidizing depositing on the arterial wall, stopping blood flow.

i have been learning to manage blood clots for about two years now, it is very dangerous, and now i believe i have understood these relationships very well.

truthfully, it might be easier for me to remove the inflamed intestines, but i am finding a donor to do fecal transplant. I have no symptoms of clotting for about two months now since returning to regular fiber supplements, and keeping saturated fat intake very low. it has taken me alot of reading and self observations/dangerous trial and error to understand how to control them and now eliminate them, without any drugs. i also consume a turmeric pepper tea and resveratrol that both inhibits my disease activity and the clots as well.
 
wildbill_52280

wildbill_52280

D Bergy said:
I take Ginger, Tumeric and Krill Oil to thin my blood. These supplements have many other benefits besides this. One big benefit is they are all help quell inflammation.

I also have evidence that these do in fact thin the blood. After my last surgery the surgeon asked my wife if I took a daily aspirin. She said that I did not. He said when he was stitching everything up, I kept seeping blood. He said it was not a problem but it was not typical. I had stopped taking the supplements a few days before, but apparently the effect had not left yet.

Some supplements thicken the blood also, so you have to know that ahead of time so you can counteract that effect. One used here is vitamin K. Anyone taking it should be aware of this.

Dan
Click to expand...
the fish oil has always been linked to risks of excessive bleeding, but turmeric, is has antioxidant and anti-fibrinogen properties, making it pretty good for blood clots and also inflammation.
 
I

Ihurt

Location
United States
I think that you can have a completely normal healthy LDL cholesterol and avoid Saturated Fats, but if you have a chronic illness that is inflammatory then it does not matter.. The whole reason people develop blood clots when having a chronic illness it becasue the body produces too many fibrinogens. When you have any active inflammation in your body, your body sends out these fibrinogens to fight the inflammation. Well that is what the body is suppose to do, but usually in normal circumstances this is a temporary thing( i.e. a person sprangs their ankle or gets an infection, the body sends out these fibrinogens and they try and help the body fight the inflammation. Once the injury is healed or the infection is gone, your body does not send out the fibrinogens anymore. Well with a person with a chronic inflammatory disorder, the body is constantly producing these fibrinogens. Fibrinogens make the blood sluggish and thick and that is what makes the person at risk for blood clots...

Now with taking the tumeric, that makes sense as it is a natural anti-inflammatory. I also have heard that apple pectin can be useful as an anti-inflmmatory. That and aloe vera. But you have to be careful with aloe vera as it can cause diarreha in some people as it has a laxative effect.

I am trying to find natural ways to fight inflammation too. I tried the many different fish oils, but they all bother my intestines so bad( go figure). I wonder if boswalia is safe to take or white willow. They are the natural asprins. But I have heard that NSAIDS are not suppose to be used in people with IBD as it can make them worse. Wonder if it is different when using natural forms??









wildbill_52280 said:
so sorry to hear of this,
thank you for telling us this story.


this is my opinion based on my own management of my own blood clots and reading lots of science:

it is the oxidative stress from chronic inflammation that interacts with LDL that is responsible for the blood clots, soluble fiber supplements can be very helpful and protective for people with IBD to avoid blood clots, Such as Apple pectin, inulin, and psyllium, from 4-24 grams per day. also, it is the saturated fat that raises LDL cholesterol. Saturated fat raises ldl, that then can become oxidizing depositing on the arterial wall, stopping blood flow.

i have been learning to manage blood clots for about two years now, it is very dangerous, and now i believe i have understood these relationships very well.

truthfully, it might be easier for me to remove the inflamed intestines, but i am finding a donor to do fecal transplant. I have no symptoms of clotting for about two months now since returning to regular fiber supplements, and keeping saturated fat intake very low. it has taken me alot of reading and self observations/dangerous trial and error to understand how to control them and now eliminate them, without any drugs. i also consume a turmeric pepper tea and resveratrol that both inhibits my disease activity and the clots as well.
Click to expand...
 
G

GutlessWonder86

I have eaten healthy but no matter what I do, my body still throws clots. My Crohns is in remission so after my stroke, my hematologist ran 1 more test that the hospital missed and diagnosed me with MTHFR mutation. She ran more tests after that and it turns out that one of the genes that was tested can't be fixed with diet or even vitamin B complex..it is definitely a gentic disorder that one of my parents gave me as I'm heterozygous A1298C single mutation.

She then went on to tell me that if my Crohn's ever acts up, that will put the risk of my body throwing more clots over 75% due to inflammation in the body. So not only do I have to worry about keeping the Crohn's in check, I have to take Arixtra daily to prevent the clots from getting bigger. I almost bled to death on coumadin and heparin. Lovenox stopped working so this is a new game plan for me.

I'm dealing with dvts in both legs since November 2012 so I'm on restriction until March. Elevate both legs, wear stockings, limit time doing chores, and no exercising on my stationery bike. This too shall pass as they say.....
 
I

Ihurt

Location
United States
My girlfriend also has MTHFR mutation. It is must to take methyl-folate. This is suppose to help as well. My friend is seeing a doctor for this since she is trying to get pregnant and she is worried since she does also have chronic health issues as well. And pregnancy is also a risk of blood clots in itself for women. But this doctor told her anyone with this mutation has to take methyl-folate. Plain folate is No good, it has to be methyl folate..
 
my little penguin

my little penguin

Moderator
Staff member
Thank you so much for posting
Hopefully it will make other aware of the risks to people with Ibd.
My son had vasculitis as part of his Ibd.
Thankfully his doctors were in top of it .
Explained the risk of clotting was higher for him and did an ultrasound for clots right away.

I am so sorry for your loss.
 
M30

M30

Location
United States
Oh my gracious. I did not expect your post to end on a bad note :(

I am truly sorry for your loss. I, I am at a loss for words. So so sorry for you and your families.

My docs always did a blood thinner and the ankle / leg massage pumps. Now I see why. I will keep this in mind.

I am so sorry once again. My condolences.
 
Tesscorm

Tesscorm

Moderator
Staff member
Some additional information re inflammation and blood clots:

Any patient who has undergone major surgery, sustained a significant trauma or suffered a serious infection will have a widespread inflammatory response. Visibly, inflammation causes fluid to collect throughout the body tissues, making the patient look swollen. It also makes the blood vessels dilate, leading to a reduction in the blood pressure. This often needs to be treated with large amounts of intravenous fluids. Systemic inflammation will also increase the metabolic rate, causing the heart rate and breathing to increase. It can also cause a mild fever and rise in the white blood cell count.

Inflammation also activates the clotting system. The medical term for clotting is coagulation. When a patient has systemic inflammation, they can develop systemic clotting. If the cause of the inflammation is not relieved, clotting can become a serious problems. It can begin to occur in all of the tiny capillaries, blocking the flow of blood and oxygen to the tissues and organs. This can lead to organ failure.

When a patient has a lot of clotting taking place, they can run out of the cells that they need to make clots. Platelets are a type of blood cell that will stick to the wall of a blood vessel and create a clot. We also have many different proteins in the blood that stimulate clot production, and make the clot strong. These proteins are called clotting factors or coagulation factors.

When clotting factors get used up because of excessive clotting, the patient may begin to bleed. Bleeding that develops due to the depletion of clotting factors is a life-threatening complication called Disseminated Intravascular Coagulation (or DIC).

Laboratory tests can be done to evaluate the coagulation system. The most common tests are called the INR (International Normalized Ratio) and the aPTT (Activated Partial Prothrombin Time). These tests measure the time in seconds that it takes the blood to clot. If it takes longer for blood to clot than normal, the INR and/or aPTT become higher. This indicates an increased risk for bleeding. If the INR and aPTT has increased because the patient has used up too many clotting factors, we can replace the clotting factors by giving a transfusion of Fresh Frozen Plasma. On rare occasions, we may give a concentrated preparation of a specific clotting factor.

We sometimes want to prolong the time it takes for blood to clot. We may want to do this if the patient is at risk for serious clotting problems, such as a heart attack or Deep Vein Thrombosis. Drugs that prolong the time it takes for blood to clot are called anticoagulants or blood thinners. Heparin is a commonly used anticoagulant.

If a patient has excessive clotting, they may also use up their platelets. If they bleed, they may lose red blood cells, which causes the hemoglobin to drop. We may need to give red blood cell or platelet transfusions.
Click to expand...
http://www.lhsc.on.ca/Patients_Families_Visitors/CCTC/Words/coag.htm
 
Josephine

Josephine

Location
Middlesbrough
Thank you Twilight for your thread, I am so sorry about husband and the vital information that you told us will hopeful help someone else does not going throught the same as you. Take Care. x
 
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