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

[wabi-sabi]

Then ME/CFS would be an really exceptional disease.

Actually, I think it might be the other way around and PAD might be the exceptional disease.

This is really part of my bigger picture on healthcare and medicine in general. I feel we place too much importance on diet and lifestyle to fix everything. Yes, there are some diseases, like PAD, CAD, HTN, DM2 that respond very well to lifestyle stuff. We tend to take these diseases as paradigmatic, but I think they're not. They are just common in the developed world, so we tend to focus on things that will fix them to the exclusion of other stuff. They are a small handful that we have some small control over with lifestyle stuff.

I know this is an unfashionable opinion where there's such an overwhelm in our culture/internet on the importance and power of diet. And I'm not saying they're useless, just not as powerful as we'd like. That's one of the central lessons of chronic illness for me- this is not something you can willpower away or think your way out of with a perfect diet, supplement, or pacing routine. It's here to stay and I have to be able to come to terms with that, painful as it may be. Other parts of life have taught me if I work hard enough I can overcome. Disease is the exception.

Partially, this is an outcome of my experiences with ME/CFS. In other ways, I am quite healthy, maybe due to good diet. But my good diet has zero, zero, zero effect on the ME/CFS. I'm more than a little frustrated with this. It's taught me on a bone deep level that some diseases are diet related and some aren't. The wellness we can all get with a good diet isn't the same thing as our disease going away. If it won't make my disease go away, maybe I don't want to be putting that much effort into it.

 

[wabi-sabi]

Alright, here I am just being snarky, but I'm having a hard day and need to distract myself.

Headline from Time Magazine:
Poor Diets Are Linked to 20% of All Deaths Worldwide, Study Says. But These Foods Could Help https://time.com/5562994/diet-disease-mortality/

Reading the reverse of this, 80% of deaths aren't diet related. So I 'l take my ice cream and not worry about it.

 

[pamojja]

I know this is an unfashionable opinion where there's such an overwhelm in our culture/internet on the importance and power of diet.

The problem is not what appears on health forums. The sad reality is that my GP confirmed to me that I'm the only of his patient taking control of my health with diet- and lifestyle changes.

And he has a really overrun office, with 150 patients in only 2 opening hours. That's less than a minute each for writing prescriptions and sickness-leaves. That and not 20% taking control of their health with diet is the reality.

 

[wabi-sabi]

The sad reality is that my GP confirmed to me that I'm the only of his patient taking control of my health with diet- and lifestyle changes.

And I find this so fascinating, in a weird way.

I don't eat as well now as I did before ME/CFS, mostly because I am often too sick to cook something healthy. I have to wonder what prevents other people from doing more on the lifestyle changes and I have to think that they also face something difficult, even if it's not ME/CFS. How can we make the healthy way easier for people? Why can't we admit that people need help with this? It feels like there's so much patient blaming for not "choosing" properly.

 

[Viala]

How can we make the healthy way easier for people? Why can't we admit that people need help with this? It feels like there's so much patient blaming for not "choosing" properly.

I think the problem may be in products themselves. They are often highly loaded with sugar, salt and fats and every year they put a bit more of them just to get clients to buy their products. There is also MSG which artificially changes the flavour to super delicious and makes people more hungry. People get used to all of this and anything healthy doesn't taste good anymore. I've seen a documentary that in Japan it is better because they have much more healthy choices in ready to eat variety of dishes, which makes them more healthy.

 

[pamojja]

It feels like there's so much patient blaming for not "choosing" properly.

Neither I nor my GP does. I only correct if someone tells me never-ending poly-phamacy without hope for remissons would be the only viable way. Therefore actually telling/blaming me for not choosing properly.

I don't think people need help with healthy living, most of the time the answer I get in real life, along with unshaking believe in what their doctor told ('take your pills'), is 'we have to die anyway one day'. Which at least sounds like the most convinient option for most, and I see no reason to blame that at all.

But don't you think we are going far too off-topic now?

 

[Martin aka paused||M.E.]

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

Yes plenty. I take Life Extension Mix as a basic supp and a good whey. And apart from that I'm experimenting with different things like benfotiamine and so on.
The nutrients in tube feedings are always crap. I haven't found a good one. It's just making money.

 

[Martin aka paused||M.E.]

@wabi-sabi 20% of deads which are directly linked to diet is quite much IMO. Bec what we don't know yet is which impact for example chronic inflammation and oxidative stress really plays in diseases like cancer, stroke, heart attacks etc. It's controversial. But a hot topic in nutritional science.

And we have to take into account that many studies on diet might be biased/financed by the food industry. They do their homework. Just like the pharmaceutical industry.

Most ppl with autoimmune diseases can tell you (me included) that diet can make the big change between very sick and remission. So yes, some diseases which are not the classic “lifestyle-diseases” can get better with the right diet.

Apart from that I can only repeat myself: I don't think I will get healthy due to diet. I want to prevent further damages to my body. Based on what we already know due to studies on FA.

Thank you all for your inputs!

 

[wabi-sabi]

Thank you all for your inputs!

Anytime! I sure have lots of opinions.

 

[GlassCannonLife]

Hi @Martin aka paused||M.E. , very interesting discussion.

I have actually been looking into PUFAs a fair bit in recent weeks, and found Chris Masterjohn has a lot of great resources on this topic. He is a strong advocate against excess PUFA consumption. He mentions that if you have had a high-PUFA diet and want to stabilise your cell membranes and reduce oxidative stress by replacing them with more stable fats, this can be achieved by reducing/removing PUFAs from your diet (as you have said in your posts here).

However, he says that this process will take around 4 years to complete, as (I assume this is why - didn't check the duration details) it involves essentially piggybacking on the gradual replacement of a large number/all of the cells in your body. He also says that you have a greater demand for vitamin E during this time (or any time you have high PUFA intake), as the main role of vitamin E is lipid stabilisation in this context.

He recommends a mixed tocopherol/tocotrienol compound such as the Jarrow TocoSorb, or a few others that are on Iherb. Note the RDA for alpha-tocopherol should be followed here (as is the case with these supplements), which is far lower than the 400 IU that is very often included in cheaper mainstream vitamin E supplements.

Alpha-tocopherol is the most important vitamin E type, and the main transporter for vitamin E is named after it as it is also the most essential and has the highest affinity for the transporter. However, in a balanced diet you would never get so much of just alpha-tocopherol, so taking such high dose supplements can oversaturate the transporter and cause you to miss out on the other forms.

Sorry if this is a bit waffly I'm just about to fall asleep but thought I'd write this out. Hope it helps. I do like your idea of a custom feeding solution, but I agree that micronutrients need to be closely monitored - unless you can vary it enough all the time that it is pretty much just a normal diet that is liquified - that should be ok!

 

[Lisa108]

Homemade tube feeding (is that the correct english term?) seems to be widely used, especially in (but not limited to) families with chronically ill / disabled children.

Reasons behind this are: better tolerance and less unwanted side-effects, better practicability, more independence.

THE requirement would be to have a proper digestion (no intestinal motility disorder / gastroparesis).

Some steps to pay attention to: a wide enough tube, basic hygiene, a good food blender [see links below for recommendations], adding enough fluids for the right consistency, a balanced diet.

The following products are hard to blend: sticky textures (like gummy bears, Mozzarella cheese, raisins), corn grains, potato chips, muesli and rice. (According to the first german link below. More info re: this also in the in the first english link.)

Here are some links in german:

https://pflege-professionell.at/stellt-selbsthergestellte-sondenkost-ssk-eine-gefahr-dar
("Does homemade tube feeding pose a risk?" Spoiler: if done correctly, it doesn't)

https://projektlebenaktiv.com/2020/05/28/sondennahrung-selbst-gemacht/
(German blogger, also shares recipes here and here)

and some in english:

https://oley.org/page/HomeTF_BlenderFoods/Home-Tube-Feeding-with-Blenderized-Foods-

https://oley.org/page/MakeYourOwnFoodTF



Bon appetit!

 

[Martin aka paused||M.E.]

Hi @Martin aka paused||M.E. , very interesting discussion.

I have actually been looking into PUFAs a fair bit in recent weeks, and found Chris Masterjohn has a lot of great resources on this topic. He is a strong advocate against excess PUFA consumption. He mentions that if you have had a high-PUFA diet and want to stabilise your cell membranes and reduce oxidative stress by replacing them with more stable fats, this can be achieved by reducing/removing PUFAs from your diet (as you have said in your posts here).

However, he says that this process will take around 4 years to complete, as (I assume this is why - didn't check the duration details) it involves essentially piggybacking on the gradual replacement of a large number/all of the cells in your body. He also says that you have a greater demand for vitamin E during this time (or any time you have high PUFA intake), as the main role of vitamin E is lipid stabilisation in this context.

He recommends a mixed tocopherol/tocotrienol compound such as the Jarrow TocoSorb, or a few others that are on Iherb. Note the RDA for alpha-tocopherol should be followed here (as is the case with these supplements), which is far lower than the 400 IU that is very often included in cheaper mainstream vitamin E supplements.

Alpha-tocopherol is the most important vitamin E type, and the main transporter for vitamin E is named after it as it is also the most essential and has the highest affinity for the transporter. However, in a balanced diet you would never get so much of just alpha-tocopherol, so taking such high dose supplements can oversaturate the transporter and cause you to miss out on the other forms.

Sorry if this is a bit waffly I'm just about to fall asleep but thought I'd write this out. Hope it helps. I do like your idea of a custom feeding solution, but I agree that micronutrients need to be closely monitored - unless you can vary it enough all the time that it is pretty much just a normal diet that is liquified - that should be ok!

Thank you very much! Great stuff. I will further look into it!

 

[Martin aka paused||M.E.]

Homemade tube feeding (is that the correct english term?) seems to be widely used, especially in (but not limited to) families with chronically ill / disabled children.

Reasons behind this are: better tolerance and less unwanted side-effects, better practicability, more independence.

THE requirement would be to have a proper digestion (no intestinal motility disorder / gastroparesis).

Some steps to pay attention to: a wide enough tube, basic hygiene, a good food blender [see links below for recommendations], adding enough fluids for the right consistency, a balanced diet.

The following products are hard to blend: sticky textures (like gummy bears, Mozzarella cheese, raisins), corn grains, potato chips, muesli and rice. (According to the first german link below. More info re: this also in the in the first english link.)

Here are some links in german:

https://pflege-professionell.at/stellt-selbsthergestellte-sondenkost-ssk-eine-gefahr-dar
("Does homemade tube feeding pose a risk?" Spoiler: if done correctly, it doesn't)

https://projektlebenaktiv.com/2020/05/28/sondennahrung-selbst-gemacht/
(German blogger, also shares recipes here and here)

and some in english:

https://oley.org/page/HomeTF_BlenderFoods/Home-Tube-Feeding-with-Blenderized-Foods-

https://oley.org/page/MakeYourOwnFoodTF



Bon appetit!

Yes it is widely used. My doc says he has more patients who did/di this. Thank you for your input!

 

[lenora]

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

Perhaps no one has the answers to this rather complex problem. @Howard has been on tube feeding for 6 years, I believe. @Howard, what do you have to say about these questions? Yours, Lenora.

 

[Martin aka paused||M.E.]

Perhaps no one has the answers to this rather complex problem. @Howard has been on tube feeding for 6 years, I believe. @Howard, what do you have to say about these questions? Yours, Lenora.

These effects don't necessarily show up within a few years. I recommend reading the article that summarizes many studies.

 

[Lisa108]

Looking a bit deeper into the scientific literature behind homemade tube feeding vs
commercially produced formula.

One thing stuck to me in particular (although it is so obvious in hindsight):

YOU DON’T HAVE TO DO ONE OR THE OTHER EXCLUSIVELY.

Instead, it is a continuum! You can mix it

• according to your dietary needs (high/low calorie intake, micro-/macronutrients, etc.)
• adapted to the situation (travel, illness, power outages, delivery delays, or simply conveniance), when one or the other is not available or feasible.

[Walia C, Van Hoorn M, Edlbeck A, Feuling MB.: The Registered Dietitian Nutritionist's Guide to Homemade Tube Feeding. J Acad Nutr Diet. 2017 Jan;117(1):11-16. doi: 10.1016/j.jand.2016.02.007. Epub 2016 Mar 17. PMID: 26994758.] see pdf attached.

 

[Martin aka paused||M.E.]

Looking a bit deeper into the scientific literature behind homemade tube feeding vs
commercially produced formula.

One thing stuck to me in particular (although it is so obvious in hindsight):

YOU DON’T HAVE TO DO ONE OR THE OTHER EXCLUSIVELY.

Instead, it is a continuum! You can mix it

• according to your dietary needs (high/low calorie intake, micro-/macronutrients, etc.)
• adapted to the situation (travel, illness, power outages, delivery delays, or simply conveniance), when one or the other is not available or feasible.

[Walia C, Van Hoorn M, Edlbeck A, Feuling MB.: The Registered Dietitian Nutritionist's Guide to Homemade Tube Feeding. J Acad Nutr Diet. 2017 Jan;117(1):11-16. doi: 10.1016/j.jand.2016.02.007. Epub 2016 Mar 17. PMID: 26994758.] see pdf attached.

Thank you for more insight insights and your work on this!!!!

Yes you could but that would not solve the problem this thread is about.

 

[Lisa108]

Yes you could but that would not solve the problem this thread is about.

Sorry for being unclear.

I think that, for some people (with a functional gastro-intestinal system), homemade tube feeding might be the best diet. Especially if it is balanced, non-gmo, organic, free-range, etc...
But this might not be feasible in some situations. Living alone? Partner working long hours?

So sometimes it boils down to what is practicable. To substitute one formula meal a day for a blended "real" meal would be better than none?

 

[Martin aka paused||M.E.]

Sorry for being unclear.

I think that, for some people (with a functional gastro-intestinal system), homemade tube feeding might be the best diet. Especially if it is balanced, non-gmo, organic, free-range, etc...
But this might not be feasible in some situations. Living alone? Partner working long hours?

So sometimes it boils down to what is practicable. To substitute one formula meal a day for a blended "real" meal would be better than none?

Of course!

 

[pamojja]

I think that, for some people (with a functional gastro-intestinal system), homemade tube feeding might be the best diet. Especially if it is balanced, non-gmo, organic, free-range, etc...
But this might not be feasible in some situations. Living alone? Partner working long hours?

I don't know, but it seems a basic feeding formula keeping fresh in the fridge for a few days doesn't seems that difficult. Amounts would have to be calculated with cronometer.com

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'

• Water ..a high mineral content mineral water like Rodgaska DonatMg. Has 1g of Mg, 1.5g Na, ..and even 3mg of Litium per liter.
• Maltodextrin ..a bit of honey instead. For the bulk of carbs I would use plant powders available organic (brocccoli, kale, spirulina, beet, carrot, tomato, kelp, blueberry, acerola...), also digestion aiding spices
• Milk Protein ..curd from organically raised sheep or goat (non-A1 casein). Add other organic protein powders upto what's needed.
• Vegetable Oil ..demeter quality of greek olive oil. Liquid fish oil.
• MCT Oil ..organic
• Soy Protein ..soft boiled organic eggs pureed into the water/curd base
• Starch ..resitant potato starch. For more fiber would also add milled flax, sesame, chia seed, inulin..
• All the other essential vitamins and minerals most convinient with LEF-mix powder. Which sadly also contains Maltodextrin. Sunday.de doesn't has unneccesary filler and takes care to include organic ingredents, but don't have it at such high doses as in LEF-mix. They do have however a higher dose B-complex.