Valve selection 4 person with ulcerative Colitis

[hugh]

I am looking for info/experiences on valve selection considerations for 47 year old with ulcerative colitis (quiescient). May need to have VR for bicuspid aortic valve. Concerned about mechanical valve and coumadin with UC. Does it make more sense to consider Ross Procedure since coumadin could be problem in event of UC flare up (bleeding)? Aside from bad valve and UC I am in good shape (healthy diet and exercise) and very active. Thanks. Hugh.

 

[Susan BAV]

Hi Hugh and welcome to the site. I found a couple of previous posts about colitis. Look up above this message and click on "Search." Then click on the words "advanced search." Then, toward the left of your screen, type in "colitis" and click on Thread titles only, or something similar to that phrase. There were two threads discussing it in the anti-coagulation forum. Take care and post again.

 

[tobagotwo]

Some thoughts...

A tissue valve isn't apt to require warfarin, and should have little effect on your unhappy midsection. However, it will need to be replaced, meaning another surgery, and the risks associated risks with it.

The Ross Procedure may work for you, but depends on what shape your pulmonary valve is in. That can vary in people with bicuspid valves, dependent upon whether there are other tissue factors involved at a level that would affect the tissue of the pulmonary, or if there is a tendency toward aneurysms.

Mechanical valves will likely keep you from further surgeries, but the warfarin is a risk factor to people with gastrointestinal issues that can invovle bleeding. Internal bleeding can go undetected long enough to be dangerous, and it's difficult to determine volume accurately. Some people don't seem to change their bleeding habits very much on Coumadin, but others do bleed more easily and stop more slowly. You don't really get to find out which one you are until you've made the leap.

Ulcerative colitis is generally considered an autoimmune disease, along with psoriasis and most forms of arthritis. I don't know if there are interactions between warfarin and any of the newer treatments now in play.

If your colitis may require surgery later on, Coumadin adds to that risk. It will also require bridging for the type of exams you're undoubtedly treated to at least annually - again a risk.

Unless an overwhelming x factor pops up, you will need to determine which risks you tolerate best in life, and be guided mostly by that.

It's never simple.

Best wishes,

 

[briansmom]

Just My 2 cents worth. I would go with a tissue or Ross.

 

[tprice54]

Welcome

Welcome

To another Central New Yorker! I just PM'd you with some comments on local cardios and surgeons...good luck in your quest!

 

[bvdr]

Hi, I have had some problems balancing colitis and associated problems with being on coumadin. It has made the management of my INR difficult but still doable. I was on coumadin before my valve replacement because of atrial fib. This made my decision easy since I really didn't have a better option since the only reason for me not to have a mechanical would have been avoidance of coumadin which I already was on. If you are able to safely do a Ross then that seems like a good avenue to explore.

If you do decide on mechanical then really push for home testing. It has made a world of difference for me. I don't feel so tied down and doctor dependent in this area of my life...and that is a good thing.

 

[Arlyss]

Some people with BAV have delicate, fragile tissue in various parts of their body, which adds to the complexity of their decisions.

I suggest that you be seen in a major center that has an understanding of BAVD. Your entire aorta should be screened, since ascending aortic aneurysm is associated with BAV, and your entire family and personal medical history reviewed carefully.

The Ross procedure is controversial in those with BAV because of its potential for early failure due to abnormal tissue. It involves self-donation of one's own pulmonary valve into the aortic position - leaving the individual with a pulmonary valve from a human donor that may fail/calcify over time and the possibility of their own pulmonary valve failing in the aortic position. When left in its own place, the pulmonary valve generally continues to work well in those with BAVD.

The bovine pericardial tissue valve has the longest proven track record in the human body at this time. If we had known that in 1990 (of course that was impossible, it was early in its history in the human body then), we would have chosen that valve then. As you can see from my signature, my husband had surgery 11 years later for the aneurysm anyway. However, we did not know anything about what being born with a BAV might mean then.

As we live our lives, only hind sight is 20/20. However, more is understood today by physicians/centers that focus on BAVD, and I encourage anyone reading this to look for those who know the most about it to help you. What is done in those initial treatments/surgeries sets the course for the future, and you have my very best wishes in researching what is the best available today for you.

Best wishes,
Arlyss

 

[xbxb]

BAV Repair and Crohn's

BAV Repair and Crohn's

Sounds like you are asking the same questions I asked before my surgery.
I have a relatively mild case of Crohn's - and before my surgery - not sure of the valve we would use. Because I was only 42 it was a tough decision.
I was very physically active I was leaning towards a tissue valve.
If I had a mechanical valve installed the negative was that you have to be taken off Coumidin and then slowly back on after a colonoscopy. A 7-10 day process.
I had asked my cardiologist - "what if I try being on blood thinners for a few weeks before my surgery - to see how I handle it with my chrons" - he thought this was a great idea to test if a mechanical valve was an option. We were going to do this however their was one last option.

I had an Aortic valve sparing repair - (my own valve) and an Aortic Root replacement. This may be an option for you.

There are not a lot of places do this type of repair - and much of the data in the literature is old - w/poor results. However there are hospitals that are having success - the benefits are it is your own valve and no blood thinners.

My surgery was done at Mass General - but I received opinions from Cleveland Clinic, Texas Heart Institute, Brigham & Womans.

If you have any questions send me a message. Good luck!

 

[hugh]

Questions

Questions

Thanks for responding to my posting.
Can you tell me more about aortic valve sparring repair? Also, if on coumadin does one have to stop taking it for annual colonoscopies? What risks does that present?

 

[xbxb]

I am not an expert in Coumadin - I think there are many on this board.
What I did learn from my experience was that they slowly take you off Coumadin, and then scope you. As I underestand it there is an increased risk, but you would be managed under a Dr.'s care- there are not many options. My understanding is a person would be in the hospital for 5-7 days prior. What I learned is it was doable - the problem is if your bowel problems get worse or you have many flare ups and bleeding- you may not want to be on blood thinners- then what do you do? I would recommend whatever conversations you have with your heart Dr.'s - your GI Dr. should be involved. Be sure your heart Dr.'s are well aware of your circumstances.
As far as the bicuspid valve goes - is your Aorta dilated? 50% of Bicuspids will need an aorta replacement. A bicuspid valve is a disease of the Aorta.
Some bicuspid valves can be repaired - I was given a 50-80% chance. They do not make the final decision till you are in surgery.
The valve cannot be stenotic - calcified. The best test to tell is a TEE - where they put a scope down your throat.
There is not a lot of data in the medical literature on repairing a bicuspid Aortic valve. Many Dr.'s are not aware. Most of the time the valve is replaced- patient is older, or depends on the experience of the institution where you are having your surgery. There is a little bit of data from the medical literature 98-02 where success was soso on bicuspid repairs but the data pool is very small - remember most people that have a bicuspid valve repair are older and have it replaced.The biggest complication and what made my surgery complex was the aortic root replacement. There are many, many valve surgeries, but less w/root replacements and much less with repairs of bicuspid valves.
I spoke w/many educated people (cardiologists, surgeons, etc.) before my surgery. I also had the help of my cardiologist - who helped me digest all the info and was looking to help me find the best outcome - my opinion is that many of the Dr.'s that are out there are not familiar with repairs- I think due to the number of patients they see that would be considered a good candidate. Most people that have valve surgery are close to 70, and an animal valve that could last 12-20 years is an option. Also as you get older bicuspids tend to get stenotic - and thus become unrepairable. As you know in your 40's or low 50's- a valve type decision is a little more difficult. Also the little data that was available in the medical literature had many redo's - that is why many people hear a repair is not possible.
My experience was to find the people that did have experience with cases such as mine - and these people all believed a repair was most likely the best option. I actually was searching for Aorta specialists. The AORTA was the serious part of my operation - and in my opinion there are far more experienced valve surgeons than Aorta specialists.
After a lot of searching the 4 institutuions I found that have the most experience w/ repairs of my type w/some level of experience: (You will not find surgeons that have done hundreds of your exact surgery - there are just not that many of these cases) I got opinions from all these institutions- all the big names -FedEx is great-you can too.
Cleveland Clinic
Mass General
Brigham & Woman
Texas Heart Institute
I chose Mass Gen. The surgeon needs to be an experienced valve man AND Aorta specialist. My surgeon in his entire career has only done 15 surgeries of my type - with no redos. But there is no guarantee.
It is true that no one can tell you how long the repair can last. No one can tell guarantee how long other types of valves will last either. It is expected that I will need another surgery some day- but the hope is that I will be much, much, older. Because my root was replaced with an artificial piece, the sense is my repaired bicuspid will last longer. My Aorta dilation is no longer a high risk - was much more of a concern than the valve itself.
Each time you have surgery the risk goes up due to scar tissue. A mechanical would likely guarantee you only one surgery. An animal valve guarantees you likely more than one surgery 12-20 years- and a good repair- likely a second surgery - but hopefully I will be old and grey. The feeling was that a repair is better than a tissue valve - because it is my own. Most of the Dr's I spoke felt a tissue valve lasts approx 12 years - and with luck maybe more. My surgeon told me that the there is not a lot of data on tissue valves lasting much longer as many people mention. I know their are newer treated tissue valves, but all the surgeons I spoke with put the range of 10 -15 years. So for me a repair seemed the best choice if it was an option. Had a repair not been possible I chose a tissue valve as my #2 option. I am quite active- quality of life- and that along w/Crohn's helped me make my decision.
There are a lot of things to think about- be sure to get a lot of opinions-from people that have experience. Best of luck.

 

[briansmom]

FWIW, my son had a colonoscopy when his INR was 5.1. The docs were not real worried about it, or anyway they were more worried about his anemia level that was dropping like a stone.