Virtual Colonoscopy Anyone?

[RCB]

Get him moving

Get him moving

Warren,
It is important to get your father moving. No one can
tell how much he will be able to get back. The key to his
recovery is to get him moving as soon as possible. OSU has
a very fine rehabilitation unit( I was there in 1982 ) and they do remarkable things. As Nancy says " Never give up..........."!
Tell your father everyone here is pulling for him.

 

[Marty]

About Chris's idea

About Chris's idea

Chris, I think the main problem is that there is no agreement in the profession as to how to manage anticoagulated patients who need surgery. I myself was totally surprised by this fact when I began to look into it a few months ago. My final authority was the chief of vascular surgery who is called on frequently to operate on warfarin patients. He said he had no specific plan but considered each patient individually and worked out a bridge or simple hold with the patients cardiologist.( I think deep down he favors in hospital heparin drip) No one including my cardiologist was able to give me a definite plan except my gastroenterologists who said they bridge with Lovenox prior to colonoscopy.

 

[ccrawford]

Marty - Thanks - I didn't know that. I don't know exactly where this action plan is going yet, but it has to include heightened awareness of both patients and docs, and it will probably include a card with maybe multiple web sites that discuss the issues, maybe a place for the patients cardio phone #, maybe web sites re drug interaction, herb interaction, etc. For the time being, I want to give people a chance to comment so we can get the best ideas we can before going forward. DuPont already provides a card with the brochure they give out to patients. In my opinion it doesn't go far enough, and I would think they would be receptive to some ideas, especially if we can get some support from the Cardiogists. I looked in "The Pill Book" and found 4 1/2 pages devoted to Warfarin alone. Just look at the amount of information available on Al's web site. I've been a casual student of warfarin for about 18 months now and I'm still learning. It scares me to think about those patients who don't take their Coumadin seriously, and it scares me even more to think about docs who are not aware of the Coumadin related risks. Chris

 

[Nancy]

For people who have mechanical valves, holding without any bridge therapy is dangerous. We know it, cardiologists know it, or should anyway, medical professionals who monitor Coumadin patients with mechanical valves know it.

If that is the case, and it is a universal danger, it would make good sense to have a definite plan for mechanical valve patients.

I don't see how there could be much controversy in this case. It seems to be a pretty hard fact.

You have a mechanical valve, you're on Coumadin, you need to have proper bridge therapy.

Help me to understand how there could be disagreement in this case.

 

[bvdr]

When I had my colonoscopy, they held my 9 PM Lovenox injection. At 6 AM I went down for the procedure with my 9AM injection taped to my chart to be given immediately after it was done.

I had several doctors on my case. 1. PCP
2. Gastroenterologist
3. General Surgeon
4. Electrophysiologist
5. Cardiologist
6. Another consulting internist

There was no concensus on how to handle anti-coagulation for me. the only concensus was that I had thrown a clot that blocked blood supply to my right colon. The problem was that I never had a low INR except the first couple weeks post op....and then it never was below 2.0. This happened 4 months post-op. I still have this ache in my side that is just a shadow of what it once was but enough to let me know it is still not all the way healed.

I know this is a little off topic but what I have learned is that the right(ascending) colon doesn't have the best system of blood supply as compared to other areas of the colon. It is the area that is more likely affected by an embolus and also an area more prone to injury from reduced blood supply following any aortic surgery. I had mitral valve surgery but I just thought all you aortic valvers might want to be aware of this. (If you do a search on this you might want to include the words "Marginal artery of Drummond". There is a very good article about it in the Cleveland Clinic Journal of Medicine, volume 70, number 11, November 2003.

Another reason that I include this information is that oftentimes a colonoscopy is ordered to investigate a problem and I don't know how often this cause is included in the diagnosis choices (differential diagnosises). It may be another area that we may need to be our own advocate because one of the treatments for it is to maintain a little higher blood pressure which is directly contrary to the effect of many of the medications we are often prescribed.

Sorry this got a little lengthy. This morning sitting in church my side was aching....and I ignored it, then I got an ocular migraine so I took my imitrex and tried to ignore it. Then I went into rapid atrial fib and I decided to wait it out since I thought the imitrex might have triggered it. No one but me was aware of any of this and now everything is back to normal except this ache in my side. This whole clotting/anti-coagulation issue hits very close to home for me but there doesn't seem to be a set answer.

 

[Blanche]

Warren:

I am so sorry to hear of your dad's stroke. I am the wife of a stroke survivor and know first hand the pain and suffering that this event can cause a person and his family. Please know that there is hope. When my husband was struck, he could not walk, talk, or use his hands. His vision was also affected. Today, he tells people who ask that he can do everything he wants to do and that everything works, but some things just work a little differently.

I went with him to therapy sessions, informational meetings, and other functions for stroke survivors. It was amazing to see people who improved every week. Our neurologist said that everyone improves but the degree of improvement varies. Physical therapy guarantees a greater degree of improvement. I know that it helped my dear one to see other patients who were struggling to overcome the same sorts of problems that he had. It helped me and our son to attend a support group for the families of stroke survivors.

If you think we could be helpful to you, please send me a PM. And, for your information, the test that you mentioned is called a Transesophageal Echocardiogram. http://www.heartsite.com/html/tee.html

With the kindest regards,

Blanche

 

[catwoman]

I had a check-up with my cardio 4/1. I had called his office 1-2MO ago asking about procedures for a colonoscopy with a mechanical valve. The GI doctor's office wants me off coumadin for 48 hrs. My cardio said Thursday no to that. I mentioned that 2 very small polyps were removed 3 years ago (my first colonoscopy) and that there is family history of colon cancer. He said again that he does not want me to go off coumadin -- have a routine colonoscopy and if anything is found, we'll proceed from there. I told him I did not want to go off coumadin w/out protection.
I have an appt. w/ my PCP tomorrow (4/5). I'll huddle with him then.

Warren:

I'm so very sorry for your dad's situation. I'll be praying for him and your family.

Al:

I'm curious: If I remember right, the prep work for a colonoscopy precludes eating veggies, basically anything containing vitamin K. If you continue taking coumadin, how much is the INR affected by the time you have the procedure?

 

[bvdr]

Warren,

I wanted to mention too that I think you made the very best choice keeping your dad on heparin. I'm sorry that he, and really your whole family, is going through this and hope that he regains alot of his function. Thank-you so much for sharing this hard time in your life with us. I do believe good will come out of it.

 

[warrenr]

thank you

thank you

Thank you very much

 

[Blanche]

Catwoman:

I'm not Al, but I did have a colonoscopy on March 1. My instructions included, "Start a clear liquid diet the day before the procedure. Clear liquids consist of the following: Coffee, tea, Sanka, clear broth, etc." There was no mention of Vitamin K, but there is very little in the clear liquids that are allowed. The cleansing process I used was very simple. I drank a bottle of Magnesium Cirtate (10oz.) at Noon the day before and took three (3) Ducolax tablets (5mg.). At 6PM, I took three more Dulcolax and that was that, or should I say, that was all that was ingested. The rest of the procedure you know!

Blanche

 

[Guest]

Chris,
I think that your plan of mobilizing people has merit. The part with the drug companies will meet with resistance. It is either the law or FDA policy that a drug company cannot advocate use of a drug for which it is not approved. I am meeting some resistance in getting money for the October meeting because I would be talking about bridge therapy. Aventis cannot fund a talk to non-medical people about an unapproved use of a drug. I even asked about providing Lovenox tee shirts to attendees and was turned down because it the do not have approval to use it in valve patients.
The only way a company can be involved with an unapproved use is to have information in their library. Then if a licensed health care professional requests information they can supply it with a disclaimer that it discusses unapproved uses. If I am going to discuss bridge therapy with a group of health care people, I have to make a disclosure that I am discussing an unapproved use. This is very tightly enforced. You frequently see ads in magazines eyc stating that the FDA has determined that an ad was misleading and that the company has to print another ad with a retraction.

 

[Nancy]

What does the FDA have to say about ANY bridge therapy? It sounds like they have do not approve anything for that situation.

I wonder what they think people with mechanical valves should do.

 

[tommy]

I appreciate all of the information.

I've had Lovenox bridges twice. While there is a window of no protection, I've felt like I quickly get double protection in the few days just before my INR is back in range. My hernia surgery took an extra week to recover due to bleeding - internal and incision. I never really stopped bleeding until the Lovenox was stopped.

I'm due for a 50 year colonoscopy (my first). I will push for the "virtual". If for some reason that doesn't work, I know that my cardio will personally negociate with the GI doc before any cutting takes place.

 

[Guest]

The FDA says nothing about bridge therapy.

Evidence-based medicine has a serious flaw in that their "gold standard" is the randomized, double-blind, placebo-controlled study. Obviously this is impossible to perform in many cases. Who wants to be in the group that gets the salt water instead of the Lovenox. The neurosurgeon at our hospital is fond of saying that most of what he does has no evidence to support it. For instance if he gets someone with a broken neck, there is no evidence showing that people do better if he repairs it. This is because there has never been a large group of people who were assigned to the group to have nothing done to see if people who had their neck repaired really did do better than those who did not.

There are many studies showing that bridge therapy is effective, but they do not meet the gold standard level. When a drug is approved, then physicians may use it for "unapproved uses". However, there is some resistance. Hospital legal departments may express reservations - limiting its availability. Insurance companies may say that it is experimental and refuse to pay. Then there is always the threat of a lawsuit lurking in the background. So this puts doctors in the position of being liable if they do nothing as in the case of Warren's dad and being liable if Tom's bleeding from his hernia surgery had resulted in the need for a blood transfusion which could have caused him to become a victim of another disease.

As I wrote this, I became aware of another solution. Why not instigate a letter-writing campaign to the FDA. Somebody can find the address for public comments. It would also not hurt to follow-up with a copy to your representative and senator. After all this is an election year - who knows what stange things happen in those years.

 

[warrenr]

Awareness

Awareness

Last week, the Today Show ran a series on Colonoscopy. They made it sound like the best thing since sliced bread. I agree with the importance of the procedure but they did not talk about any of the complications which most of you on this sight face because of your valve replacements and or warfarin/coumadin therapy. I emailed "[email protected]" all of the replies that are on this sight concerning what happened to my father. Don't think that they will fully understand the problems that can be encountered by all of you when preparing for colonoscopy. Maybe if they understood the gravity of the situation and the ignorance of most of the medical profession concerning bridge therapy they would talk about it on national television. Maybe if everybody on this sight emailed "[email protected]" they would get the message out and that would be great for everyone, even the hard headed no it all doctors.

 

[Rain]

Thanks for sharing....

Thanks for sharing....

I?d like to thank you, Warren for sharing this with us. I?m so sorry to hear about your Dad. His best friends are a positive attitude and determination. I?m sending him lots of positive vibes!!

Anyone who says, ?coumadin is no big deal? should read this thread. It IS a bid deal.

 

[Blanche]

Warren:

If I might suggest, in addition to contatcting the Today Show, you should consider contacting Katie Couric. I suspect that she is directly responsible for Al Roker's televised colonoscopy. Her colonoscopy was televised about four years ago. Couric is one of the founders of the Jay Monahan Center for Gastrointestinal Health at New York Presbyterian Hospital, which opened March 30, 2004. Her husband, Jay Monahan died of colon cancer at age 42 in 1998. If this particular Center were to take a stand on anticoagulation and colonoscopy, it would certainly have an impact nationwide. Just my thoughts.

Blanche

 

[Karlynn]

My $.02

My $.02

Warren,
Thank you also for sharing your Father's story. I'm glad there is improvement and I will pray for his continued improvement.

I think the tragedy of this lesson is that there is still so much misinformation and bad medicine being practiced in relation to Coumadin. It is a serious medication, but one that, for most people, should be able to be managed safely through most of life's ups and downs.

When people post that they don't want to be on Coumadin because of all the horror stories - it's my opinion that those horror stories are primarily caused by a medical community with members that don't understand the correct protocol for warfarin and insurance companies that refuse to pay for home testing which would allow the warfarin user to be optimally monitored in the same way that diabetics are.

I would rather hear people say that they chose a tissue valve because of their extremely active life style and the risk of injury they would encounter due to that life style. But to hear a 30 year old say "I'd rather have 3 or 4 additional surgeries, and the decline in health preceeding those surgeries, than risk coumadin ." just tells me how much misinformation is out there or that the wrong people are giving that information.

I haven't responded to Warren's post until now because, quite frankly, his Father's story infuriates me. It is an horrendous example of the harm that an uneducationed medical community can do. Coumadin did not do this to his Father, medical personnel did. And to keep people from accepting a life saving drug because of the ineptness of physicians is inexcusable.

 

[Nancy]

In this thread we are talking about a particular aspect of Coumadin management which is poorly understood by many in the medical field, especially those who are out of the cardiology field or who do not regularly deal with Coumadin issues. That aspect is "bridge therapy".

That doesn't mean that Coumadin is bad for you or anything remotely like that. It means that this aspect of Coumadin management has to be brought out into the light and there has to be some awareness made of how to go about "bridge therapy" the proper way.

It is ignorance here that is the bad thing, not Coumadin.

If doctors would be willing to discuss these issues with each other, it would help their patients considerably, and would make their Coumadin patients safer.

The medication Coumadin, properly managed has very few side effects, and most people will learn to live wth it very comfortably.

If a Coumadin patient has a doctor who does not understand Coumadin, that is indeed a problem. But then, if any patient has a doctor who does not understand his medical problems, it's a problem also.

So we're not condemning a medication here, we're condemning ignorance.

I've said it before, and I'll say it again, for Joe, having been on it for 26 years, it has caused few problems. He has had doctors in the past who did not do a good job at managing it, but that is not the fault of the Coumadin. That is the fault of someone who didn't take the time to learn.

 

[Rain]

Rat Killer

Rat Killer

You can blame it on ignorance of doctors, you can blame it on life style, you can blame it on anything you want to... but in the end.... it?s still a result of taking rat poison.

Most people don?t post their horror stories here... that doesn?t mean they don?t happen EVERY single day. Telling folks it won?t impact their lives is just as bad as telling them horror stories. I?m not out to influence anyone?s decision of valve choice.... I absolutely do not want to do that.

I agree that the person who is in a rocking chair leading a very ?consistent? lifestyle is not going to have nearly as many problems. But as Karlyn implied... an ?active? person will realize the impact of taking coumadin... some more than others.