Patel Thompson, Jordan Rubin, and other self-cured IBDers as slick marketeers- thoughts?

kretinist said...

I don't usually get quite so worked up, but I feel like we're at a crossroads regarding my son's treatment.  He's been flaring for almost two years solid now and his GI essentially has demanded that he go on to 6mp.  But his doctors have done nothing regarding food allergies, diet, probiotics, managing his other symptoms, etc. and have instead just fobbed me off with 'Let's get this flare under control first.' which isn't happening. 

All of us who've sought alternative treatment therapies to avoid the various high powered IBD drugs have felt your frustration. In my experience, most allopathic GIs will not discuss diet, probiotics or anything else other than pharmaceuticals and surgery, where their training lies.

If you are fortunate enough to live on the east or west coast of the US, you'll be more likely to find a naturopathic or complementary medicine gastro doctor who can and will discuss these other supportive and positive approaches. You may be interested to read about the work Dr. Ronald Hoffman, a complementary medicine doctor,  has done in treating IBD: http://www.drhoffman.com/page.cfm/843

There's a ton of information out there, but you do run across conflicting messages and folks that seem to be in it for the money. For the first two years, I was desperately ill and housebound most of the time. During that time, I read every digestive health book I could find. I learned alot and common trends and principles emerged. If you're looking for a general, comprehensive book to learn all you can, Optimal Digestion is one of the best books I've found.

A lot of trial and error is involved because we all have unique causative factors and respond differently. Because it is a time consuming process, I feel meds have their place to get people past the crisis where natural approaches have a better chance to work.

A couple of things to remember: There are a lot of cases of misdiagnosed UC so people may genuinely think they have "cured" themselves of UC when it was not UC to begin with. Additionally, a certain small percentage of people have one flare or episode and never have another. So it is possible that the self proclaimed cured people are being sincere but what they are selling or giving out free advice for in actuality had or has nothing to do with a cure or tratment for UC. I do believe there are many products in the so called supplement or natural cure area that are just scams and are simply out there to exploit the misery of people with this disease. The internet has made the proliferation and sale of these products so easy and profitable that there will be those who take advantage of desperate people, that is the reality of life. This site periodically attracts people that are IMO shills for such scam products. There have been shills posting and posting back and forth to each other on the same or similar threads. When you think about it what better place to push your fake treatment at no cost then a forum dedicated to a disease with no cure and meds that have varying efficacy and often bad side effects. These shills are not that difficult to spot. There are also people that push methods out of the sincere desire to help others. I think Sheldon (vitamin A enema) Cfromutah ( spinach and sunflower seed) fall into this category and there are others, these are the good guys and really are valuable to have on the forum. Ultimately it is an individual choice to see if any alternative treatments work or to stick with the meds or blend the two in a complimentary treatment regime. Most on the site use a complimentary treatment which to me makes sense.

As far as I'm concerned, Princesa is the voice of reason on this forum.

I think one explanation why so many people with IBD turn to this list is because they fail to gain satisfaction from their care providers. It is only natural to look elsewhere for support when left with unanswered questions or the feeling that concerns are not given due consideration. In addition, in those situations in which traditional medical practice is not working, a number of us effectively take on the challenge of making our own decisions on how best to treat ourselves (perhaps following practices that may be deemed "slick" by some).

I genuinely like both my GP and GI, but find it difficult to talk to them about diet, alternative therapies, etc. because, as Princesa argues, it is not within their domain of experience. Fortunately, both have been willing to "humor" me so far and don't berate me for the decisions I have made. Perhaps that is the best one can hope for in many if not most situations.

Ideally our physicians would assist us in this process. But until this becomes the norm rather than the exception, we are often left to our own devices - with a little help from our friends.

    Exactly Princessa.  My GI doctor has been pushing Remicade on me for the past three years.  Prior to that, he pushed 6MP, which I did start taking six years ago.  Okay, still getting flares while on 6MP, therefore, the push toward Remicade.  Well, our neighbor just happens to have her doctorate in pharmacology and ironically works for the manufacturer of Remicade!  Let me tell you what she had to say.  "Remicade has had some amazing results in treating people with Crohn's, UC, RA and other diseases.  However, it also has had some pretty big horror stories.  Remicade is NOT a cure.  So, Chris, if you are uncomfortable in receiving Remicade, especially the fact that you were exposed to the TB virus years ago, by all means refuse the treatment."  There you have it folks, straight from the horse's mouth.  She also admitted (which I knew already) that doctors get pretty hefty "kick backs" for pushing these drugs.  Needless to say, the last time my GI doctor mentioned Remicade to me, I told him to pay for his cruise like I did.

     Princessa, I am not familiar with George's aloe vera juice.  Where do you purchase it..and does it taste as yukky as it sounds?  LOL!

I think it's amazing and touching what lengths we will go to and what we will try to control this DD. And while some alternative healers are providing treatment they believe in with altruistic motives, it pays to be cautious. Because I also am amazed and disgusted by the number of people out there truly selling snake oil, knowing it and not caring as long as it makes them a lot of money.

People who trade on the misery of others are subhuman, in my opinion.

I don't think the slickness of the drug companies bothers me quite so much. Simply because they are obviously in it to make money. I don't really expect too much else from them at this point.

Okay, maybe I'm a bit of a cynic.

I have become quite fond of my "punch them in the face". In fact, I'm visualizing it with every article/website I read. Fun times!

princesa said...
It's a digestive disease.

 My only problem is with the above statement- IBD is not a digestive disease, it's a disease of the gastrointestinal organs, it manifests itself there. But is is most certainly not a digestive disease in that manner of speaking. I generally agree with princesa, for the most part. I don't know what to make of the "self-cured". Well yes I do, I personally have very little faith in their cures. But whatever, people will try/buy anything. I do have some issue with those posters who "blame" their GI's for bad advice, drug pushing, etc. People have to be pro-active in their health care- if you don't like what a doctor is saying to you, find another one! And I'm not referring to any one specific poster, just that attitude in general. Also the belief that a doctor "should" be able to "cure" you... that's just simply not true. They should be able to alleviate your symptoms to the point of living a pain-free, unimpeded life, & they should offer you EVERYTHING in their realm of knowledge to do that. Which is drugs & surgery, for Western medicine. The pharmaceutical industry is a whole different ballgame.

Unfortunately it's not always an option to just change doctors. I think a large portion of people are limited by their insurance coverage, incomes, geography, etc. I know we have to drive almost 6 hours to get to the pediatric GI at the other end of the state as there aren't any where I live. When we are in Alaska there is one pediatric GI who comes every three months. Not much choice .....

What concerns me about doctors though is that there is no standard. It's not just opinions on supplements or diets that differ, it's in the meds they 'push' as well. We've seen 3 GI's in the past few months. The GI who has been treating him said that he needs 6mp. The next, who works in the same hospital, said that he should be on cyclosporine. Then we went to the UK and they said that he should be on azathioprine. That's a whole lot of differences. Do we just pick based upon which doctor's personality we liked best? Whichever had the 'best' education? Or just the one who gave us the answer we wanted to hear?

I think that there is a difference between a doctor who doesn't listen to you or treat you with respect, and one who doesn't give the 'right' answers. I would love for any one of them to say that he should try colazal or dipentum. But that's not what they felt was the best treatment for him, whether I like it or not.

It's kind of up to the patient how they work with their doctors. If you go in expecting a certain answer and don't get it, then I think that's where some of the blame game comes in. As much as I hate them at times, doctors are coming from a very different background than I am as a lay person. Even if I feel they are 'wrong' it doesn't mean that they are or that I should hunt around until I find someone who tells me what I want to hear.

One thing that I like about my doc is that when I asked about diet, he said that unfortunatley, I'd have to figure it out for myself. He said that some IBDers have a lot of trouble with food and others don't, but there was no way he could tell me what to not eat. He did suggest that when I'm in a flare to eat low residue foods, just to be a bit "kind" to my colon when it's all inflammed. As for probiotics, he basically said that he's had many patients tell him that they help, but that he really doesn't want to suggest one type over the other because there aren't enough good studies to show which are best.

Probiotic said...
Kretinist- I know what you mean, but we do have to be careful of what we wish for in terms of doctor's meeting a "standard" in terms of treatment. The push for a more government-controlled "evidence-based medicine" is just another version of what insurance companies now do to dictate a cookie cutter approach, with various hoops, for what meds or treatments will be applied/allowed based on symptoms and responses to meds- and in the process making us all fit square pegs into round holes sometimes to fit the cookie cutter. Whether we seek help from MD's, naturopaths/"alternative" docs or self-treat, we all need to take charge ourselves with research, trial and error, and common sense. Incidentally, 6MP and azathioprine both metabolize to the same thing and it is a case of doctor's individual preferences and comfort- but on the whole I am glad different docs are free to pursue different approaches when i comes to these sorts of drugs.

I just wish most MD's weren't pretty much as universally hopeless, as Princessa points out, at even considering anything other than their narrow blinders of drugs and surgery- even as complements- it's truly pathetic. In an ideal world one would have both a regular and an alternative practitioner consultant, but even then they usually loathe one another so you have to balance in the middle using self-research.

I just find it odd that three different doctors, presented with the same facts, come up with three different answers.  I know about 6MP and azathioprine.  When the UK doc suggested azathioprine though, she also said "Yes, they're really big on 6-mp in the US.  We seem to get better results with azathioprine."  Bit of an odd statement to make in my view. 

Ultimately though, I ignore brochures for just about anything.  I look at what research studies I can access, seek out side-effects, dosing and indications.  Other than that I ignore most stuff promoting any drug one way or another.  There's nothing like a P & G sponsored reasearch study....

I also agree that it is pathetic that the majority of doctors don't look at complimentary medicine, particularly in IBD.  A dietician that I met with while Garrison was in ICU said repeatedly that he could have anything because he was so malnourished.  Even then, I knew that to be a horrible idea, but didn't know enough to aruge my point.

His first meal tray once he was able to eat 'regular' food and properly swallow again, was a cheeseburger on a sesame seed bun, french fries, a chocolate brownie with walnuts and orange juice.  It makes me cringe thinking about how long he was on the toilet, in completely agony after that meal....

It's ridiculous that 'they' don't think what you put in has to do with what you put out. 

 

seconder said...
As someone who does a lot of his own research I often find myself at odds with doctors who are extremely rigid in their practices -- which is nearly every GI I've met.  What confounds me the most is the insistance on implicit consent.  It's very much a system that presents a toxic choice, waves away the serious side effects, and then sets it in the patient's lap if something untoward happens.  "Well, you knew the risks."

I've had the same experience with multiple GIs. "You knew the risks" is CYA.

What confounds me, too, is when a patient is able to achieve long-term remission, after two solid years of misery, I've yet to find a GI who is interested in hearing what that patient is doing. They seem to have no curiousity or desire to learn more - to learn something that might help their other patients. I finally asked one GI why he didn't question me concerning my successful management of UC and he laughed and told me I was simply in an unexplained remission. I could go back into a bad flare at any time and I should be sure to call him when I was ready for more medication.

I've found that a lot of medical practice is CYA -- with little or no improvement in outcomes.  There's an interesting article in the New Yorker that covers some of this ground:  http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande

If remission didn't occur due to 5ASAs >> immunosuppressants >> biologics (or pred.) it's unexplained.  Wouldn't it be a joy if life were that simple?  Well, if it isn't milk or juice or water, it's an unexplained liquid.  Who could be happy with that?