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When I visited "my" gastroenterologist last week, the words and the tone of a statement he made clearly revealed his concern that his patients/clients and/or possible patients/clients of the future research on the internet information connected with their gastric concerns... He said, "95% of what you read on the internet is pure garbage", although what I read on the internet seems connected with NIH, the Mayo Clinic and who knows what else... regarding possible issues with illness etc. I find "The World's Healthiest Foods" website incredibly informative, although it lacks information about tropical/subtropical vegetables and fruits that have much higher levels than what is typically found in the U.S.; guayaba (guava)/#1 in Vitamin C, nopal (cactus paddle) for diabetes... I don't consider pharmaceuticals miracle cures, although creating a diet that truly removes FAP/Gardner's Syndrome/Crohns Disease/J-Pouch issues is very complex. I imagine the issue for the doctors is that they truly know the parts of the human body connected with their specialties 1,000 times more than any of their patients and "they'll be damned" if one of their patients/clients tells them how to cure an organ they've never truly studied. One of my greatest passions over the past 20 years has been that of international cuisine. If I had a restaurant or gourmet prepared food store or service, I would be damned if one of my clients, who is not an "expert" in the kitchen or international cuisine told me how to prepare (what was possibly lacking) one of my dishes...

There must be a greater discussion between the J-Pouch patient and the specialist. However, the moment we enter the doctor's office, we submit ourselves to the typical role of doctor (expert/god) and patient (defenseless and medically ignorant)... But that's the relationship. None of us will go back to school to become our own doctors and perform analysis and surgeries on ourselves. However, I feel that there is a giant abyss between the doctor and the true long-term issue experienced by the patient... Drug, drug, drug... "Take this, and if it doesn't remedy the issue, then we'll know that there's something else happening..." Back in 1997 I visit an ADD specialist after having read much on Adult ADD and it's neurological difference. When I mentioned a neurological imagery for diagnosis of ADD (Supposedly the ADD patients have a structural difference in the frontal lobes of their brains), the psychiatrist scoffed at the idea as being very expensive and unnecessary. He prescribed me an amphetamine and said, "Look, if the drug works, it's because you have ADD. If it doesn't work, maybe it's the wrong drug." Do you sense the risk in this experimentation? The psychiatrist must justify his career by swearing by and prescribing pharmaceuticals... Who knows? Maybe the issue isn't ADD but something else and that the Neurological tests would invalidate a certain percentage of ADD diagnosis, although the drug may help with the other possible physiological/mental issues... Now, what if we changed our diets well before we are diagnosed with Crohns or FAP or Gardners? What if we removed life style causes of IBD or Gastritis or Diabetes or or or...? Yes, it is clear that FAP/Gardner's syndrome is hereditary. However, there is a question as to just how much risk is created by our diets... Granted, most people (like me) don't reconsider their lifestyles until long after they've been diagnosed with problems. So, there is little risk to the Pharmaceutical companies and to the medical specialists and hospitals that they will find themselves without markets, clients, and steady income...

The only way I can inform myself about what may be occuring in my body and possible intervention not dependent upon a very costly service with extreme time restraints (the doctors only have so much time for "chatting" with their patients) is through the internet. However, it is clear that the doctors feel threatened by the amount of information accessible on the internet. Yes, there is a risk of being misinformed, that could cause conflicts within your relationship with your doctor and with your own healing. Turmeric is a wonderful natural "drug". However, it creates the possible risk of problems with the Gallbladder (people with gallstones are recommended against consuming turmeric)... These days I cook with a lot of turmeric, since it is a very strong anti-inflamatory that does not negatively affect the stomach lining. Supposedly it is wonderful for lowering blood pressure because it thins the blood. What would my new cardiologist say if I said, "I'm not going to take the blood pressure medicine because I am cooking with a lot of fresh turmeric."?

I imagine that the most satisfying doctors practice would utilize homeopathic remedies, since it would bring the doctor closer to the issues. The problem is that each fruit or vegetable has a different nutrient/sugar/fiber content than the others in the batch (too much variability impossible to truly measure..., impossible to guarantee; too slow in this "must be resolved yesterday" culture)... I have a dull pain near where resides my gallbladder... What if it ruptures tomorrow? What if I have an aneurism near my left kidney tomorrow? What if I have a heart attack tomorrow...? My opthalmologist father became ill with cancer of the colon and died of cancer of the Liver months later... The older brother of my landladies who runs mini-marathons was running one day (2 months ago) and what seems like the following day Lymphatic Cancer "exploded" in his mouth, pressing his tongue against the roof of his mouth and rapidly appeared in his legs... Now, he won't be running and is on Chemotherapy and radiation therapy...

So I feel these semi-new issues within my abdomin. And there is no doctor in the world who will spend time discussing the many possibilities and concerns. So, I spend much time "investigating" on the internet, something he lothes... However, the problem is the discrepancy between the information/response by the doctors and all that is felt/experienced by the patient...

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Doctors are trained in western medicine. If you believe a more holistic approach would benefit you, perhaps you can seek out a practioner and move in that direction. Before relenting to surgery I exhausted all western and alternative therapies to induce remission. If I were to get sick again, I would treat my condition the same way. Not all holistic doctors are worth merit, get a recommendation for a good one.

Sue Big Grin
suebear
Hi Ms. Frustrated. I'm glad you appreciated what I wrote and the responses. I have the tendency towards writing much more than most "Americans" wish for reading; always a bit personal. However, I believe the issues of and around and preceding the J-Pouch are horribly personal and isolating that part of relaxing around this incredibly personal issue is hearing from within another person with similar experiences... Although I have the tendency towards writing much and very personally, I tend towards feeling foolish afterwards, leading to the question of "should I make myself feel worse than I already do by sharing with others my experiences and concerns?" The U.S. is a country of super heroes... And super heroes don't complain or wince at pain. They don't become ill. I imagine that most of us wish we could appear that way with others. However, the truth is that the scars, the bathroom issues, the sexuality issues, the unpredictable discomforts, the unpredictable digestive responses to the same thing that didn't cause problems yesterday, the sudden changes, the uncertainty of the future is very isolating, horribly personal and effects our jobs (last night I couldn't sleep because I was running to the bathroom every 5 minutes because what was signaling that I must "evacuate" was not moving; usually broccoli or chick peas or...; actual this is today's issue and I'm doing what I can...), effects our relationships, and our oh so fragile confidence levels... No one lives your experience but you. And you learn that so well with Colitis or FAP/Gardner's Syndrome or Crohns and moreso with what connects us, The J-Pouch. It's funny, you don't learn that one of those super heroes had severe personal problems until you read that they died of, how about Anal Cancer and Farrah Faucet... But, I wonder just how much the stress of maintaining appearances and not complaining about anything to anyone impairs the person's immune system... And the truth is, one must be a super hero to endure these issues. Yes, I wish I could be devote all of my energy and desire towards my dreams of being my fantasy Ross without heavy duty health issues or concerns. But I have only one life and one body and this is my response. Writing.

I'm glad you appreciated. It helps much.

Ross
RJG

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