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Recently had a stroke and have UC. Doctors want to put me on warfarin- help?

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Posted 7/18/2014 8:15 AM (GMT 0)
Hi,
I've had left-sided UC for 15 years (I'm 30). Long story short but four years ago I had a fecal transplant, they'd worked great until this point, but when I came home from work I developed dizziness, which progressed to right-sided facial weakness/droop, inability to raise my right arm or walk. I was admitted to the ER where they diagnosed a Transient Ischemic Attack. Since that day I suffered with daily dizziness, vertigo and hear sensitivity to the point I thought I was developing MS. However two months ago I suffered a major stroke and they think I have anti phospholipid syndrome; another autoimmune disorder which essentially makes my blood sticky. They want to put my on warfarin which I'm terrified of given my UC; I'm already bleeding and they've just put me on low-dose aspirin!
Posted 7/18/2014 12:23 PM (GMT 0)
I'm not sure what you meant by your fecal transplant worked great UNTIL THIS POINT. How is your UC now? If it is still in total remission then I wouldn't worry about it. In any event, you really don't have much choice. Worst case scenario is you have a choice between worse strokes which may include death or being a vegetable or having your UC back. That's pretty much a no brainer.
Posted 7/18/2014 3:00 PM (GMT 0)
Hi, sorry your having such a rough time! It sounds like you have been through an awful lot. From what you have said I don't really see what the alternative is, I think you are going to have to take the warfarin, because you really don't want to risk another stroke in my opinion.
Posted 7/18/2014 3:12 PM (GMT 0)

Well, I can only share my experiences having both UC and having been on blood thinners.

I was diagnosed with UC in the 90's. In 2005, I had a rather significant DVT of my right leg. My UC at that time was somewhat under control. I was on Warfarin for about a year. I didn't have any issues with it during that year, even when I had some mild flares. From the time they took me off of that until this past April, I was on low dose asprin. I never had any issues, even when I began to have a flare in March 2013 that I'm still dealing with today.

In April of this year, I developed another DVT of the right leg. (Caught this one a whole lot earlier. I guess I am trainable.) This time, instead of Warfarin, I was started on Xarelto. I find Xarelto to be much easier. I didn't have to go into the hospital (bed rest at home for 2 days) and there is no need for regular blood testing, like you have on Warfarin. Even when my flare seemed to worsen, but turned out to be c. diff in June, which resulted in a rather hastily scheduled flex sig, I had no issues with the blood thinner. The bleeding that I had from the biopsy during that study was pretty minimal. The thought is that I'll likely be on blood thinners for the long haul.

Of course, if I notice that my bleeding (which is infrequent) would increase, I'd quickly call my primary care doc, and my GI. But in short--my situation with UC and blood thinners has not been much of a concern. (Sure beats the risk of another DVT or developing a pulmonary embolism.) Hope that helps a bit.

Posted 7/18/2014 9:14 PM (GMT 0)
I had a stroke, or 'thrombosis' - Sagital sinus thrombosis.

Worst headache for 36 hours and projectile vomit without nausea so I drove myself to ER knowing it was neurological.

Became paralyzed and in ICU, $64,000.

Warfarin is great! I got off in 3 months by taking 2 hour MRI/MRV with vascular layer showing it was totally resolved. I have some mice/voles munching on that rat poison in my front yard now, works great because its an overdose, they bleed internally and get thirsty and wander away from home and croak.

Never did Heparin nor Warfarin/Coumadin cause my gut to bleed. Totally safe.

The only thing I cannot remember after my stroke is my former limitations :)

Funny thing was I had interview with Bank one month after stroke to run their financial databases and all employees take the wonderlic just like NFL players. 50 questions in 12 minutes, I passed but was never sure if the difficulty was due to my condition or simply a really hard test.

Post Edited (aguywithuc) : 7/18/2014 3:17:19 PM (GMT-6)

Posted 7/19/2014 8:23 AM (GMT 0)
Garry - what I meant is I'd been having transplants for five years prior to this episode however I used a new donor and that same day I had the stroke.
Since the. I have not had another transplant due to fear. As such my UC is not under control, rather it grumbles along and I flare every few months. They've currently put me on low-dose aspirin and I've noticed some bleeding which has me concerned regarding the risk of warfarin and a major bleed.
You're all right, I don't wish to have another stroke as I was lucky enough to recover almost completely from this one, however if my risk of another stroke is 1 in a thousand, but my risk of living with no quality of life is 1 in 2 then I don't know - but thank you for sharing your experiences, I really appreciate it.
Posted 7/19/2014 10:29 AM (GMT 0)
I was given Warfarin when hospitalised in the UK with a viral illness and also in mild flare, I was told that it is standard practice as people with UC have raised risk of blood clots so they don't take risks while people are laid up in hospital. I did seem to bleed more with it however the majority do not or they would not continue to prescribe as standard.

My report from my genetic 23andme screen (they no longer offer this health report) that I received some years later said that I would have an increased response to Warfarin and should need lower doses than average. I don't know how accepted that information is in the medical community but here is some info from my report

Although a variety of factors influence a patient's ideal dose of warfarin, the genetic variations in the CYP2C9 and VKORC1 genes reported by 23andMe play an important part. In January 2010 the FDA updated warfarin's label to say that information on these variants can assist physicians in selecting a starting dose of the drug. The agency also provided initial dosage recommendations for patients with different variant combinations. The FDA does not, however, require that genetic testing be done before prescribing warfarin.

Versions of the CYP2C9 gene known as *2 and *3 can slow down the body's ability to break down warfarin. This causes the drug's concentration in the bloodstream to decrease more slowly, so the patient needs a lower dose to begin with. Each T at indicates a copy of CYP2C9*2. Each C at indicates a copy of CYP2C9*3.

The normally functioning version of CYP2C9 is called *1.

Warfarin exerts its anti-clotting effects by inhibiting a gene called VKORC1 that is involved in vitamin K recycling. This in turn reduces the body's vitamin K levels, which translates into less clotting because many of the proteins involved in the clotting process depend on vitamin K in order to function.

Some people have a version of the VKORC1 gene that reduces its function even in the absence of warfarin. Like those with the CYP2C9 *2 and *3 variants, these people may also need less warfarin than people who do not have this variation. Each T at increases a person's sensitivity to warfarin.

The variations in CYP2C9 and VKORC1 reported here are present at different frequencies in different populations. For example, about 20% of people with European ancestry have at least one copy of CYP2C9*2, but this version is rarely found in people with Asian or African ancestry. These prevalence differences at least partially explain why the ideal warfarin dose tends to vary by ethnicity.

A small number of people whose data indicates that they have CYP2C9*1 may in fact have a different version of CYP2C9. Some of these different versions may affect the body's ability to break down warfarin in the same way that CYP2C9*2 and CYP2C9*3 do.
Posted 7/19/2014 10:39 AM (GMT 0)
Has it been proven that your FT with your new donor had anything to do with your stroke, or was it just a coincidence?
Posted 7/19/2014 12:04 PM (GMT 0)
No it has not been proven that the transplant caused the stroke, although how you would prove that I'd never know. Perhaps just a terrible and odd coincidence. Although I know there is research going into the role of gut commensal organisms in anti phospholipid syndrome, and this may corroborate that.
Posted 7/19/2014 6:01 PM (GMT 0)

WorriedUCer said...
just a terrible and odd coincidence

Could not be anything else.

UC'ers need to understand that we have a greater chance of stroke.

Crohn's and Colitis May Be Tied to Risk of Heart Attack, Stroke

consumer.healthday.com/cardiovascular-and-health-information-20/heart-attack-news-357/briefs-emb-10-14-8amet-ibd-stroke-heart-attack-risk-acg-meeting-mayo-release-batch-969-681075.html

This is why I pull bloodwork frequently at self-pay pricing to examine my platelet count which always goes sky high during a flare and contributes to cardiovascular incidents.
Posted 7/19/2014 10:09 PM (GMT 0)
And if this had been an old drug with an established safety profile and a wealth of large clinical trials behind it then I think I could reach that conclusion. Even so my stroke would have been noted down as a serious adverse event and that data collected to see if there is a potential safety signal. However as it is an experimental treatment with virtually no clinical trial experience and they don't even understand what it does or how it works I don't feel particularly confident that I can just dismiss it.
I know everyone is excited of it as a new treatment, and I was too, and I don't think that will change, but like everything there may be risks involved, and we don't know what those are yet.
Posted 7/19/2014 10:20 PM (GMT 0)
I guess my ultimate question for you is: how are your stress levels? Is is possible to take off from work to help with recovery? I certainly hope you are taking care of yourself.

Stress happens to be the trigger for UC flares, as well as strokes, so it therefore comes off as no surprise to me that UCers have a higher risk of stroke.

Best.
Posted 7/19/2014 10:36 PM (GMT 0)
My stress levels are ok, I really thank you for asking me how I'm doing :)! In the last few years I've become somewhat of an anxious person, I guess a result of from a very young age learning to cope with this difficult condition. However I work from home most days which I love and just enjoy spending time with the people that matter to me, so all in all I feel quite lucky to have that
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