Tube fed patients - does tube feeding keep us sick or even worse?

[Martin aka paused||M.E.]

This just doesn't sound safe to me unless you are a dietician trained in tube feedings.

Are you a trained nutritionist? Or how do you decide what you'll eat?
I've already done this for about half a year in 2020. The thing you need is a calculator to make sure you get all the nutrients and a a sufficient amount of kcal per day.

 

[wabi-sabi]

Are you a trained nutritionist? Or how do you decide what you'll eat?

I'm not, but I have seen one and found it helpful for my stomach issues. Does it help the ME/CFS? No. It's not a disease that can be fixed with dietary modification. Basically I eat what doesn't give me a stomach ache or make me nauseous.

Since I'm not tube fed I am far less fragile than you are. For most of us, nutrition comes out in the wash if you eat a varied diet. With a tube feed you just get what's in the packet, so if there's a tiny nutritional error it will multiply with time. Premade mixes have the benefit of being designed by someone with this specialist education. And you really, really shouldn't mistake youtube and twitter for real dietary advice.

You're a lawyer, right? Would you ever recommend that a person represent themselves in court n a life or death situation? That's the principal here.

 

[lenora]

Martin, have you asked for a discussion with a dietician who knows about tube feedings? Sometimes we can hear or read something that's alarming, but an explanation of exactly why something is done (or given) may help settle the matter in our minds. It's a very complex issue.

I'll readily admit that I know nothing about this matter....and really wouldn't want to do anything with some expert opinions. Life must be very frustrating....I do get understand that and I'd feel the same way myself. Wishing you better health. Yours, Lenora.

 

[Martin aka paused||M.E.]

nutrition comes out in the wash if you eat a varied diet

And that's exactly what I did in 2020 and what we want to do now and the exact opposite of nutrient from tube feeding.

Would you ever recommend that a person represent themselves in court n a life or death situation? That's the principal here.

Weird comparison. But to answer your question: there is no life or death situation in german court trials since 1945 but I get your point though and take your concerns seriously.

Premade mixes have the benefit of being designed by someone with this specialist education.

Yes and sometimes miss a lot of things themselves, so I had to take additional nutrients in the past and apart from that it's mainly based on cheap oils and sugar. And I did further research on the topic (apart from the article I linked in my first post) and with this amount of sugar and fatty acids I risk conditions like prediabetes, blood clotting and many more nasty things over time. I would like to have a workaround. So, that's my point. And I survived and improved on self-made mixes in 2020, so why not now?

really shouldn't mistake youtube and twitter for real dietary advice.

Thank you for your trust in our intelligence. We don't get our information from social media.

But thank you for your input and I will further discuss that with my internist next week (though I have already done that and he says it's no problem).

Best,
Martin

 

[wabi-sabi]

Thank you for your trust in our intelligence. We don't get our information from social media.

I am not trying to insult your intelligence. I am saying that nutrition, like lawyering, requires experience and expertise and so much more than book learning. I don't want you to hurt yourself is all.

And I fundamentally don't think you can get better with a different feed. That is partly my pessimism, but this disease is just too complicated to be fixed with food, despite what the internet tells us about every disease.

Of course, it isn't really my business what you choose to do. I'm just trying to warn you away from what (to me) sounds like a dangerous experiment and a needless waste of your energy. I don't want you to hurt yourself with false hope.

 

[Martin aka paused||M.E.]

I am not trying to insult your intelligence. I am saying that nutrition, like lawyering, requires experience and expertise and so much more than book learning. I don't want you to hurt yourself is all.

And I fundamentally don't think you can get better with a different feed. That is partly my pessimism, but this disease is just too complicated to be fixed with food, despite what the internet tells us about every disease.

Of course, it isn't really my business what you choose to do. I'm just trying to warn you away from what (to me) sounds like a dangerous experiment and a needless waste of your energy. I don't want you to hurt yourself with false hope.

Thank you! I don't think I will get better because of another diet. I just want to prevent further damages. I get your warning and maybe you are right and we contact a nutritionist on top of my doc. But it's definitely not a waste of time. Rancid oils and high amounts of sugar have their consequences. And I don't want to play Don Quixote.

 

[Martin aka paused||M.E.]

Life must be very frustrating

It is! And far beyond! Thanks we will check our plans with a nutritionist. We have a contact who is well educated and experienced with tube feeding and not part of a company which wants to sell their products.

 

[Viala]

And I fundamentally don't think you can get better with a different feed.

I did, I tested many diets and found one which is making my symptoms less severe. I did not recover, but have a bit more energy and less pain. Dietary guidelines changed over the years, in the last century people were encouraged to eat sugar and were told that margarine is healthy, we know now that it is not the case and that history may repeat itself. Nowadays many people eat unhealthy, but many also eat healthy but still get sick and suffer from diseases like diabetes, so I think that dietary guidelines are not perfect yet. I believe that with a proper amount of research and testing different options we may find some good solutions and still be safe.

 

[Woof!]

Why do you think that we have gastroparesis?

Whoops! There I go, making assumptions by generalizing one person's situation to others (and wasn't I trying not to do that by asking questions?). My bad!

 

[Martin aka paused||M.E.]

I did, I tested many diets and found one which is making my symptoms less severe. I did not recover, but have a bit more energy and less pain. Dietary guidelines changed over the years, in the last century people were encouraged to eat sugar and were told that margarine is healthy, we know now that it is not the case and that history may repeat itself. Nowadays many people eat unhealthy, but many also eat healthy but still get sick and suffer from diseases like diabetes, so I think that dietary guidelines are not perfect yet. I believe that with a proper amount of research and testing different options we may find some good solutions and still be safe.

Not to forget who makes these guidelines... The government who also grant-aid the industry, especially the milk and flesh producing industry. Apart from that the thing with rancid oils is not even a controversial topic in nutriential science (what is very rare)

 

[Viala]

Not to forget who makes these guidelines... The government who also grant-aid the industry, especially the milk and flesh producing industry. Apart from that the thing with rancid oils is not even a controversial topic in nutriential science (what is very rare)

True, it reminds me how Dr. Michael Greger summarized this conflict of interests, 'You just don't mess with the candy men'.

 

[Martin aka paused||M.E.]

True, it reminds me how Dr. Michael Greger summarized this conflict of interests, 'You don't mess with a candy man'.

nice one … it’s the exact problem with these recommendations… hell in the 50ies cigarettes were recommended by governments and doctors.

It’s our sheer human arrogance and ignorance that we always believe to be super advanced and omniscient while the truth is that science is a shifting and twisting history and yet doesn't really know what is healthy - though we know some things that are unhealthy over time.

If we would meet here in 50 years we would laugh about what we now think is a “healthy diet”.

One has to find the right balance in this jungle.

We only have two tools for this: science and the reaction of our bodies.

And that's the topic of this thread.

 

[pamojja]

I mistook tube feeding to mean directly in the vains. But if it means just circumventing the stomach, than the food doesn't has to be really that sterile, and I could think of a lot of much more healthy replacements than what's in this formula.

I google translated the list of ingredients in your formula:
'Water, Maltodextrin, Milk Protein, Vegetable Oil (Medium Chain Triglycerides/MCT Oil [Coconut/Palm Kernel]), Soy Protein, Rapeseed Oil, Starch, Inulin, Fish Oil, Wheat Dextrin, Calcium carbonate, emulsifier: soy lecithin, potassium citrate, cellulose, sodium chloride, sodium hydrogen phosphate, magnesium carbonate, emulsifier: mono- and Digylcerides of fatty acids, choline, vit. C, sodium citrate, iron (III) phosphate, zinc sulfate, vit. E, niacin, pantothenic acid, copper sulfate, manganese chloride, vit. B1, Vit. B6, sodium fluoride, vit. B2, Vit. A, ß-carotene, chromium chloride, folic acid, sodium molybdate, potassium iodid, sodium selenite, vit. K, Biotin, Vit. D, Vit. B12'

Most of those supplemental forms of essential nutrients are really their inferior forms. Is it possible making roasted (organicaly raised) beef-liver (the most nutrient dense food) with veggies, crushing and mixing it like a smoothie? Then basically any healthy food we usually chew but prepared this way would work.

 

[Viala]

nice one … it’s the exact problem with these recommendations… hell in the 50ies cigarettes were recommended by governments and doctors.

It’s our sheer human arrogance and ignorance that we always believe to be super advanced and omniscient while the truth is that science is a shifting and twisting history and yet doesn't really know what is healthy - though we know some things that are unhealthy over time.

If we would meet here in 50 years we would laugh about what we now think is a “healthy diet”.

One has to find the right balance in this jungle.

We only have two tools for this: science and the reaction of our bodies.

And that's the topic of this thread.

That's exactly my thinking. Yes it was the same with smoking, I wanted to write about it as well. Funny how these things change over the years.

We will probably find that many things considered healthy today will not actually be healthy. And it is harder nowadays because industrial changes are super fast now and we are exposed today to many many new ingredients which we don't know much about, even less how they interact with each other and what will their influence be after decades of using.

I find it surprising that we did send people to the Moon but still don't know which diet is really healthy. It can't be that hard.

 

[andyguitar]

Most of those supplemental forms of essential nutrients are really their inferior forms.

Yes it's not the best forms of nutrients. Particularly the minerals. Do you take any supplements @Martin aka paused||M.E. ?

 

[Woof!]

The name of this thread hooked me immediately, since it brought several things to mind. In no particular order (and begging your indulgence, since I'm not tube-fed myself)...

(1) As someone highly sensitive to corn products, processed sugars and most all starches except oats (any exposure results in serious Sjogrens Syndrome, increased ME/CFS symptoms, vertigo and debilitating migraines), I worry that the corn products, processed sugars and starches in tube feeding formulations are making/keeping people sick. It's junk nutrition, not good nutrition, and it's poison to people like me (and others who have yet to make the connection between individual triggers and disease).

Martin said, "Not to forget who makes these guidelines... The government who also grant-aid the industry, especially the milk and flesh producing industry." AGREED!

(2) Our GI track is so much more than a glorified poop-chute. A moving, healthy GI track is vital to move toxins out of our body, and peristalsis needs volume (fiber) to work right. Liquid diets alone don't cut it. When I was in practice (veterinary, not human), I always saw the first poop after surgery as a good sign that the GI track was doing its job supporting my patient.

(3) In veterinary clinics, tube-fed patients are more susceptible to life-threatening fungal infections. I don't know if that's true for humans, tho.'

Back to Martin's original question... "Does tube feeding keep us sick or even worse?" I think it's an excellent question for every longterm tube-fed patient to ask, to advocate for the best possible nutrition, and I'm glad he's asking it!

Are there practitioners with an expertise at weaning patients off long-term tube feeding?

 

[andyguitar]

Are there practitioners with an expertise at weaning patients off long-term tube feeding?

It's usually done gradually. At least thats how it is done for stroke patients who lost their swallowing ability and regained it. One who i knew got back to normal over a period of a few weeks.

 

[Woof!]

And I fundamentally don't think you can get better with a different feed..

Gotta respectfully disagree there, based - if nothing else - upon my own experience. Garbage-in means garbage-out, and our poor bodies deserve better when we're asking them to deal with so many issues.

Even if it's not a matter of getting-better, it's still a matter of not-getting-worse, and that takes good nutrition. (Just MHO, says Lynne, reaching for a homemade organic green smoothie which she would share if you were here - grin.)

 

[wabi-sabi]

Gotta respectfully disagree there, based - if nothing else - upon my own experience.

Actually, I'm speaking from my own experience. I was a health nut type before getting sick- little good it did me! All the dietary changes I've made have either made me sicker or done nothing, with the exception of getting dietician advice for my tummy trouble which at least decreases my tummy pain.

I feel that all this talk and focus about diet is really about trying to control the uncontrollable- our illness. As horrible as it is, it just isn't going to go away anytime soon, with any home remedy that I can make or any lifestyle change. It's going to take hardcore science and medicine. That's terrifying how helpless it makes us. I am utterly dependent on a few researchers who are trying their hearts out with not enough funding and some doctors that don't get it and dismiss me. Of course focusing on diet feels preferable to facing that reality, and denial is sometimes a perfectly good and compassionate coping mechanism. But other times I need to take a step back and admit that I cannot control this disease for my own sanity. Too much dietary tweaking is the short road to an eating disorder (at least for me).

Thanks for the smoothie offer (I'll pass since that's a stomach ache in a glass for me), but I'd love to send you a chocolate covered ice cream bar! They never fail to make me feel better!

 

[pamojja]

As horrible as it is, it just isn't going to go away anytime soon, with any home remedy that I can make or any lifestyle change. It's going to take hardcore science and medicine.

Then ME/CFS would be an really exceptional disease.

When I was diagnosed with PAD and a walking disability was told by MDs that however much green I would eat, my condition is considered non-reversible (by them) and having a 30% chance of dying within 5 years. Nothing science or medicine or healthy eating could change about.

Glad I didn't believe a word, and indeed accomplished remission not only from the walking-disability from PAD, but also from an additional COPD diagnosis and constant PEMs all by lifestyle-changes, comprehensive supplementation and dietary changes.

But that is the sad predicament for anyone suffering from CVD - the no.1 killer before cancer - and believing in such patented 'science' and conventional medicine only.

So sad.