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

[Martin aka paused||M.E.]

Hi,

so as most of you know, I'm tube fed. Tube feeding mainly consists of cheap nutrients, no matter which brand you choose.

But: My concern after a recent discussion are the fatty acids. (My) As it comes to those, my tube feeding consists of 50% MCT oil, the rest consists of rapeseed oil and sunflower oil. So a lot of PUFA.

The attached article summarizes some research on essential fatty acids, especially oils.

Nevertheless, a substantial portion of dietary PUFA still accumulate over time in cell membranes (88).
Perhaps the reason the mammalian body appears to be hard-wired to get rid of the bulk of these fatty acids is because their excessive inclusion in cell membranes presents an oxidative liability that can wreak havoc on the cell.
PUFAs are fatty acids that contain two or more double bonds between carbon atoms. Double bonds make a fatty acid very easily oxidized – that is, they make its electrons easily stolen by free radicals. Because the typical oxidation reaction that occurs in cell membranes requires the presence of two double bonds positioned near to one another, it is primarily PUFA rather than monounsaturated fatty acids that are vulnerable to oxidation (see Figure 3 on page
22). The more double bonds they have, the more susceptible they are. Oxygen binds to PUFA at the site of the oxidized double bond, turning the fatty acid into a peroxyl radical. Peroxyl radicals initiate chain reactions within cellular membranes by interacting with other PUFA; in each reaction, the peroxyl radical becomes a lipid peroxide and the second PUFA becomes a peroxyl radical that can go on to react
with a new PUFA; the cycle continues, repeating this process. In the presence of certain metals, the lipid peroxides will break down completely into products such as MDA (see Figure 3 on page 22), which
can infiltrate the rest of the cell to damage proteins and DNA. Lipid peroxides themselves can be enzymatically cleaved from the membrane and cause damage to the rest of the cell.

So that is a concerning reading. As we know, oxidative stress and possibly proton lacks are a problem in ME/CFS. What I take away from this article is that my tube feeding might hold me back from getting better, further destroying my cells and as a consequence causes more harm than I already have.

The article itself is very drastic. It extends the harmfulness of fatty acids to include essential fatty acids and states that our daily need for fatty acids disappears (0.5-1%).

All in all my question is: the combination of high amounts of maltodextrin plus the fatty acids might be an explosive mixture that makes things worse or at least holds me back from getting better.

What are your thoughts?[/Quote]

 

[sb4]

I wouldn't be comfortable with the amount of PUFA in feeding tube meals.

I remember reading somewhere that tube feeding causes increased damage to the liver thanks to high PUFA causing NAFLD. They said they used to only use feeding tubes temporarily thanks to these liver issues. No idea if its true or not, just vaguely remember reading about it a few years ago where I was thinking I might need a feeding tube. Thankfully I never did though.

A side note, the MCT oil at 50% could be great if your body can absorb it, depends what form its in and how fast its dripped in I suppose but normal people has an increased chance of diahrea from only small amounts of MCT Oil. At least I did when taking only a couple of tea spoons of it with a meal.

I remember you saying diahrea was an issue so maybe that contributes?

 

[Martin aka paused||M.E.]

I wouldn't be comfortable with the amount of PUFA in feeding tube meals.

I remember reading somewhere that tube feeding causes increased damage to the liver thanks to high PUFA causing NAFLD. They said they used to only use feeding tubes temporarily thanks to these liver issues. No idea if its true or not, just vaguely remember reading about it a few years ago where I was thinking I might need a feeding tube. Thankfully I never did though.

A side note, the MCT oil at 50% could be great if your body can absorb it, depends what form its in and how fast its dripped in I suppose but normal people has an increased chance of diahrea from only small amounts of MCT Oil. At least I did when taking only a couple of tea spoons of it with a meal.

I remember you saying diahrea was an issue so maybe Does that contribute?

My liver is healthy. At least in the blood.
Diarrhea was caused by too much lactose in the whey. My whey now is lactose-free and now I suffer from the opposite
Thing is, many ppl with myopathies or other illnesses that cause difficulty swallowing are living their entire life on the be feeding. So I don't know what to think.
Being very severe my impression is you can only make things wrong.

 

[andyguitar]

The article itself is very drastic. It extends the harmfulness of fatty acids to include essential fatty acids and states that our daily need for fatty acids disappears (0.5-1%).

Thing is, many ppl with myopathies or other illnesses that cause difficulty swallowing are living their entire life on the be feeding. So I don't know what to think.

Well if some live for years whilst being tube fed then the article might be way to pessimistic.

 

[Martin aka paused||M.E.]

Well if some live for years whilst being tube fed then the article might be way to pessimistic.

I hope so!

 

[Howard]

All in all my question is: the combination of high amounts of maltodextrin plus the fatty acids might be an explosive mixture that makes things worse or at least holds me back from getting better.

What are your thoughts?

This is all beyond my ability to comprehend, however, I may be able to offer some insight.

My feeding formula does not contain maltodextrin, but does have organic high linoleic sunflower oil, organic MCT oil, and organic flaxseed oil.

I use Kate Farms Peptide 1.5 (please check their website for nutritional information)

I tried other formulas prior to this one, but each had some form of milk protein or a milk derivative, which caused horrible bloating (I am lactose intolerant, among many intolerances).

Otherwise, I've not noticed any difference (as it relates to overall health, or energy levels) since I started on this formula two years ago (versus regular food). However, my blood work no longer indicates that I am suffering from malnutrition.

The only real negative aspect regarding feeding tube reliance, is that my peristalsis has worsened considerably in recent months. Not chewing or swallowing food (much at all) since February has slowed my digestive system down tremendously.

There seems to be no trigger (neurological communication) from the top end down, to initiate the digestive process. Mostly, it seems my intestines are in stasis, not doing anything, and not recognizing that there is actually "food" in the jejunum.

To combat this, I use ginger powder rather frequently (orally in small amounts), chew natural ginger gum, breathe deeply, and manually massage my gut in a clockwise motion. Stimulating or shocking the nervous system also helps (as a last resort).

Didn't mean to dump all of this information upon you, but all of this interrelates, so it's sometimes difficult to find a stopping point.

H

 

[wabi-sabi]

If the alternative is starving to death or getting terribly malnourished (and I'm betting it is, otherwise you wouldn't be tube fed) then the tube feeding is a good thing!

 

[Tammy]

You might check out Liquid Hope by Functional Formularies.

 

[pattismith]

tube fed people may suffer with some vitamin deficiency on the long run (biotin...) maybe something to check?

 

[Woof!]

Hi Martin and Howard...
As someone who has many dietary triggers and as a retired veterinarian who knows the pitfalls of tube-feeding animal patients (someone who honors all the hard work our GI tracts do to nourish us, maintain homeostasis and rid us of sooo many toxins), this topic interests me. Would you mind sharing a full list of ingredients you're getting?
Also, if you don't mind, please share what got you to the diagnosis of gastroparesis and the decision to be tubefed. The more I know, the less I'll assume (so I don't come off as completely ill-informed when it comes to human tube-feeding).

 

[Martin aka paused||M.E.]

what got you to the diagnosis of gastroparesis and the decision to be tubefed

Why do you think that we have gastroparesis? Why would a tube be helpful in this case? I don't.
The decision was not to die.
This is my tube feeding:
https://www.bbraun.de/content/dam/c.../b6/produktinfo-sn-nutricompenergyhpfibre.pdf
Sorry but I can't translate everything that's in it. It's mainly based on maltodextrin and MCT-Oil. But I mix it with whey... And take additional nutrients.

 

[wabi-sabi]

The decision was not to die.

Exactly!

I have to admit, I'm a bit confused about your question if the tube feeding is good for you. If it keeps you alive, it has to be good, right?

If you're worried about the optimum mix of nutrition in your feed, I'm not sure. But I'm guessing that there just isn't data on it and the research hasn't been done yet. I'm also not sure how much self experimentation is safe, if you're sick enough to need a tube feed.

Is there a dietician who can help you who knows about these things?

 

[Martin aka paused||M.E.]

Exactly!

I have to admit, I'm a bit confused about your question if the tube feeding is good for you. If it keeps you alive, it has to be good, right?

If you're worried about the optimum mix of nutrition in your feed, I'm not sure. But I'm guessing that there just isn't data on it and the research hasn't been done yet. I'm also not sure how much self experimentation is safe, if you're sick enough to need a tube feed.

Is there a dietician who can help you who knows about these things?

The question is: if these oils further destroy my cells and mitochondria do I have a chance of getting better or does it hold me back.
The only thing that I'm worried about are the fatty acids. It's as if you drink a glass of oil per day.
Every tube feeding is based on water and oils.

 

[wabi-sabi]

The question is: if these oils further destroy my cells and mitochondria do I have a chance of getting better or does it hold me back.

I don't see why they would...

And if you die of starvation without tube feeding, you won't have a chance to get better later.

I guess what I'm trying, rather clumsily to say, is don't worry about this. Don't let the perfect be the enemy of the good. Get as much nourishment into you as you can and use your limited precious energy on something else.

 

[Irat]

The question is: if these oils further destroy my cells and mitochondria do I have a chance of getting better or does it hold me back.
The only thing that I'm worried about are the fatty acids. It's as if you drink a glass of oil per day.
Every tube feeding is based on water and oils.

It's right that the free radical processes of oxidative rancidity processes harm cells in different ways, such as inhibiting their ability to produce energy and contribute to cell aging and inflammation....BUT question is do you have any other choice ?And does this process may takes years to cause damage? Things you can t change right now I would just skip to think about and accept how it is .The worry causes probably more harm and oxidative stress

 

[wabi-sabi]

Things you can t change right now I would just skip to think about and accept how it is .The worry causes probably more harm and oxidative stress

Yes, this exactly!

 

[Howard]

Hi Martin and Howard...
As someone who has many dietary triggers and as a retired veterinarian who knows the pitfalls of tube-feeding animal patients (someone who honors all the hard work our GI tracts do to nourish us, maintain homeostasis and rid us of sooo many toxins), this topic interests me. Would you mind sharing a full list of ingredients you're getting?
Also, if you don't mind, please share what got you to the diagnosis of gastroparesis and the decision to be tubefed. The more I know, the less I'll assume (so I don't come off as completely ill-informed when it comes to human tube-feeding).

This is a link to their website (Kate Farms).. lists all ingredients, vitamin content, mix ratios, etcetera.

https://www.katefarms.com/for-clinicians/products/peptide-1-5-plain-formula/

I started with tube feeding (formula) August of 2019. I've since put on 40+ pounds (up from 87lbs.) My CFS/ME hasn't improved much at all, but I have few complaints regarding the tube itself. The formula is a big neutral, but at least it doesn't seem to cause any unintended side effects (besides the previously noted lack of regular peristalsis events). I've developed MANY food intolerances and sensitivities in recent years.. so, being able to find a product that's tolerable is a godsend.


And thank you for asking.. I do have severe gastroparesis. And I shall respond in regards to that in a private message, as that content appears as though it may be slightly off topic for this thread.

H

 

[Viala]

This is my tube feeding:

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'

My question would be, is it in any way possible to make your own formula with ingredients of your choice, but based on this formula as a guideline? I think all of these ingredients can be bought separately, you could have a safer choice for yourself, although it would definitely need some work to prepare all of this and help of other people. I don't know much about tube feeding, but wonder if it's possible to mix ingredients on your own.

 

[Martin aka paused||M.E.]

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'

My question would be, is it in any way possible to make your own formula with ingredients of your choice, but based on this formula as a guideline? I think all of these ingredients can be bought separately, you could have a safer choice for yourself, although it would definitely need some work to prepare all of this and help of other people. I don't know much about tube feeding, but wonder if it's possible to mix ingredients on your own.

It is possible and @Push Fwd and me will do that next week

 

[wabi-sabi]

It is possible and @Push Fwd and me will do that next week

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