I think that gmcraft makes some good points. Clearly we all agree that doctors with more knowledge and particularly intimate understanding of any particular patient are the people you have to trust. We as travelers on this journey have experiences to draw from, but they are never the equal to their years of school and clinical experience. We are not a substitute for them. But I have seen many examples over 22 years of doing this, that have taught me they are fallible human beings like all of us, and are not all knowing, and even sometimes make mistakes. Even with that knowledge people have to have their bottom line, go to person, that they trust and who is qualified to not only treat them, but answer a myriad of questions, many outside their area of expertise and training. The question is should we be asking a specialist in chemo therapy for answers about something related to eating?

For instance, I trust my radiation oncologist to determine in his area of experience, training, and expertise to use the tool he is trained in to kill my cancer. I’m less interested in what he thinks about surgery which is a world of details and a depth of anatomical knowledge he will never have. Ditto what he thinks about nutrition, also out of his realm. When it comes to PEG tubes I trust my Gastroentorolgy doctor, but even he is not a nutritionist. It’s a very specialized world to be in medicine. Knowing that, we trust teams over singular doctors.

The topic of blended diets crosses two different disciplines gastro and nutrition. Each with a perspective of a topic that has evolved and changed greatly just in the last decade. The Oley Foundation who has more information about tube feedings and nutrition is a good source. I read about my button type Mik-key PEG tube system there and I knew immediately I wanted rid of my dangling tube that was in the way, prone to clogging and had no good way to unclog it at home, causing emergency trips to the hospital to have it taken out and replaced, and in general as something not being balloon retained, that I could not change ever at home. Only my GI doctor understood my desire to change and why, the rest of the team was clueless that the button type even existed let alone its advantages.

When it came to nutrition, my original nutritionist was only interested in keeping me on pharma company formulas. God forbid that I should eat the real food that has sustained me and most of humanity forever. Brainwashed comes to mind as I think of that. Obviously to her, those canned products must be better in someway.

There are reasons for some people, in some situations, that formulas are better. But tens of thousands of people on PEG tubes blend their own foods when they return to a normal life, but are NPO or nothing by mouth for various reasons. There is no reason that with a little education people cannot do this if they do not have contradictory medical issues. It’s healthier and cheaper. Even if they just blend up what’re the rest of the family is eating most of the time, they are frequently better off. They are no more prone to nutrition or digestion issues than anyone else. Most of America lives on junk food. It’s bad for you on so many levels. My cardiologist could not be happier with my cardiovascular health since I started eating the things I do on a real food, PEG diet. Every part of my blood health is at optimal levels. Even my blood pressure went down to normal over time as the fats and other things I was consuming no longer clogged my arteries. I’m actually healthier this way. All that aside I would kill today to eat some great tasting well cooked meals; even a hamburger commercial reminds me of what I have lost. Food is one if life’s great pleasures. I’ve come to accept its absence. But if I have to do things through a tube I’m going to optimize it. That ability to add a variety of healthy natural foods is not happening on canned formulas. Just read their labels.

Just remember that doing this well is very dependent on getting set up right. The right blender, the right diameter PEG tube and design, the right consistency of blend for bolus syringe feeding. None of this is rocket science but you have to learn it like anything else.