Valve replacement and Crohns Disease

[Boxwell]

Hello,

I have to get my aortic valve replaced in the summer (and my mitral repaired). I'll be 37 in a couple of months. I also have Crohns disease.

I need to make the decision on whether to go with a tissue valve or with a metal one like a lot of people here I guess. With Crohns disease I have this extra complication though. Sometimes I will getting some bleeding when going to the toilet, and I also have to watch what I am eating sometimes. I noticed someone saying that your diet has to change when you go on to Warfarin.

There's probably a good chance that I will need more surgery at some point with my Crohns (I had a resection about 3 years ago.)

A big part of me is saying to go with the tissue valve as when it may need replaced, on average about 10- 15 years time (is that correct?) then I hope there are medical advances where the next valve I get will be a permanent one that has no need for Warfarin. Is this sort of advance likely though?

My age points me towards the metal valve though, but then I have the issues with Crohns and Warfarin.

Really confused on what I should do and would love to hear your thoughts on my problem.

Thanks for any advice,

Graeme

 

[neil]

firstly hello a fellow brit, yes by all means do a bit of scouting round on here,you will get different views and opinions,but remember thats all there are, have a good talk with your cardio and surgeon as at the end of the day there are the experts, this is a great site and welcome aboard, you a footie fan then?

 

[Ross]

With Crohns, I'd have to say go with a tissue valve. Yes, because of your age, mechanical makes the most sense, but with the disease, it would be an enormous undertaking to be on anticoagulants. Tissue gets my vote here.

As far as Coumadin and diet, NEVER change the way you eat. Everything can be adjusted for. There is no need to listen to these silly people saying you can't eat certain things. It's all hogwash. As far as medical advances: They've been saying it for years and nothing has become of it yet. Don't place your life in the hands of the unknown and uncertain.

 

[Boxwell]

Thanks for your replies. The pig valve is the one I would prefer, it's just my age that is making me think about whether a metal one would be a safer bet. I feel in my situation you could almost toss a coin and have as good a chance of getting it right.

Neil - what are hbp tabs? Is it likely that I would need them and beta blockers as well?

Thanks again,

graeme

 

[Mentu]

Welcome, Graeme

Welcome, Graeme

Graeme, welcome to VR. When you speak with your surgeon, I think he will be able to provide additional guidance with respect to valve selection. Learning as much as you can now will help you to take an active part in that discussion. As you are no doubt finding, today, there are a number of tissue alternatives. I wonder, too, with the complicating factor of the Crohn's might you be a candidate for one of the less invasive options such as trans-catheter replacement? Let us know how things are going with you Graeme.

Larry

 

[Ross]

Thanks for your replies. The pig valve is the one I would prefer, it's just my age that is making me think about whether a metal one would be a safer bet. I feel in my situation you could almost toss a coin and have as good a chance of getting it right.

Neil - what are hbp tabs? Is it likely that I would need them and beta blockers as well?

Thanks again,

graeme

Ask anyone here, because of your age, I'd be slapping you silly not to go mechanical. Thing is, with Crohns, you don't need the additional worry of Warfarin. I still suggest tissue, even against my better judgement. Later, perhaps you can go mechanical, but try to stay off of Coumadin as long as possible with your disease. I don't like anyone to have multiple surgeries, but your an exception to my rules.

Replacement by catheter is not an option for you. That is reserved for those that would die if they had to undergo major surgery.

 

[Lynlw]

Ask anyone here, because of your age, I'd be slapping your silly not to go mechanical. Thing is, with Crohns, you don't need the additional worry of Warfarin. I still suggest tissue, even against my better judgement. Later, perhaps you can go mechanical, but try to stay off of Coumadin as long as possible with your disease. I don't like anyone to have multiple surgeries, but your an exception to my rules.

Replacement by catheter is not an option for you. That is reserved for those that would die if they had to undergo major surgery.

I agree with Ross about tissue with your Crohns.
I don't know if percutaneous valve replacements is just for the people who can't have surgery in the UK, but since you need both your aortic replaced and mitral repaired, I'm pretty sure you wouldn't be a candidate for it.
BUt hopefully if you get a tissue now, by the time this one needs replaced that could be done in the cath lab.

 

[neil]

hi graeme.hbp.....high blood pressure tablets,cant say if you will be on either,hopefully not, have a good talk to your cardio and surgeon about choice,personally i would go tissue,but i am not an expert lol,listen to all the opinions on here,and from the cardio etc,then make YOUR CHOICE,whichever way you go its sure gonna be a better valve than the one you got now,

 

[Kathy McCain]

Hi Graeme,

I would have to say tissue too, because of your Crohns. You need to make the final decision with your Dr's. I wish you all the best! Please keep us updated.

 

[Philip B]

Choices

Choices

Yeah, going tissue is a no brainer if Crohns presents bleeding issues. Hopefully, should you go with tissue, you'll be able to avoid coumadin. Of course, there aren't any guarantees that coumadin won't be necessary even if you go with a tissue valve.

-Philip

 

[arnie2498]

i notice you live in UK. do you hear about DABIGATRAN ?it may help you change your mind.

 

[Ross]

i notice you live in UK. do you hear about DABIGATRAN ?it may help you change your mind.

I wouldn't count on it. We've been hearing about it for years and even now, it's not being used for valve patients.

 

[Lynlw]

I wouldn't count on it. We've been hearing about it for years and even now, it's not being used for valve patients.

Not to mention any anticoagulant could be a problem if you have to deal alot of bleeding ect and other things that can go along with having crohns.

Graeme, IF it helps, many large centers like CCF are giving more tissue valve in ther patients 40 and up now, since valves are lasting longer, REDOs have better stats.

 

[bvdr]

I'm not in your same situation because I'm older (OK, old) and I didn't develop problems with my colon until after I had a MVR with a St. Jude mitral valve. Since then though, managing my warfarin has been more difficult. It isn't just the bleeding issues but the times I've had to be on steroids and/or antibiotics for colitis since the meds affect my INR. I didn't really have a choice about what kind of valve since I have atrial fib issues as well but with your situation, I think you would be served better with a tissue valve.

 

[dsouter]

The whole reason I chose a Tissue valve first time around was because my sister had just been diagnosed with Crohn's and my brother Colitis.
I got a good 9 - 10 years out of my valve and another year so so.

I did not end up having these issues though so am going Mechanical this time round.

 

[lstein]

I have had colitis for 35 years. I have been on and off prednisone the whole time since nothing else works. I had AVR when I was 3 months short of my 60th birthday. My surgeon (who has been doing this for 30+ years and has done tens of thousands of replacements) and I agonized over how to factor in my colitis to the choice of valve. So did my gastroenterologist. I was surprised that neither of them had much, if any, experience with the effects of warfarin on someone with long term colitis and prednisone use. They were both concerned about adding long term (hopefully!!) warfarin use to the mix but couldn't definitively rule it out. In the end I opted for a tissue valve primarily for reasons unrelated to the warfarin however it was a factor that I considered--I have enough drugs going through my system without adding yet another and one that can react with other drugs. One final note for what its worth--prior to the surgery I was on 20 mg of prednisone a day. Since the surgery (which was almost 7 months ago) I am down to 2.5 mg of prednisone and continuing to taper off and I am symptom free. Perhaps OHS is a cure for colitis! Hopefullly, it works for Crohns as well. Best of luck.

 

[tobagotwo]

I suppose if one really stretches and says it was exacerbated by poor bloodflow, it could have had some effect on the colitis.

Dabigatran is an anticoagulant. While it is less volatile than warfarin, it's still going to allow fee bleeding when (and where) you need it least.

The three top dogs as far as tissue valves are the Medtronic Mosaic (porcine), the Carpentier-Edwards Perimount Magnum (bovine pericardium), and the St. Jude Biocor (mixed grille). The Edwards and the St. Jude have the longest track records at this time, each averaging over 20 years in older (over 65) patients. I had a Mosaic put in at age 52, which I just had replaced after five years with a Biocor. The Edwards Magnum has an enthusiastic following on the site.

Lots to think about.

Best wishes,