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Does anyone have a feeding tube to conserve energy?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
As I’ve become more severe, I find that I’m too tired to eat, I am in bed 95% of the day now. I am not getting the nutrition that I need simply because I don’t have the energy to stay awake and eat. It’s really worrying me but I don’t know what to do.

I need to have some sort of caregiver to help me prepare meals or a feeding tube so I can literally just focus on resting.
The more I do the worse my cognition seems to get
 

Howard

suffering ceases when craving is removed
Messages
1,333
Location
Arizona
I am sorry you are struggling.

My J-tube was placed because fluids were not emptying (or being recognized) in my stomach.. but I feel it's unlikely any doctor would place a feeding tube unless there was a specific issue. Heck, they were initially reluctant to give me one when my weight was down below 90 lbs! So in my non-expert opinion, I think it would be a tough sell.

When I first became 100% bed-bound, my wife left me with a cooler full of food and snacks each morning, enough to last all day and into the evening. If you are alone, perhaps you can have meals dropped off, or daily snacks/packed by someone else. Or maybe a local volunteer would suffice?

Please note, a G-tube is far less invasive (directly into the stomach, versus intestines), so perhaps a G.I. would be more willing to place that instead, if it were deemed medically necessary.

I'm not sure if any of that helped, but I am hoping that with a little help, you can get through this.

H
 

Woof!

Senior Member
Messages
523
A few points to consider, @crypt0cu1t...
(1) when you use tubal feeding, this cuts down on the variety of nutrients and micro-nutrients you ingest. In addition, the quality of nutrients is often far below what a good, organic whole food diet can offer your body, and your body needs the best it can get to heal.
(2) It's vital that you make every food you swallow work for you! For example: walnuts/pecans/pistachios offer good nutrition whereas processed cheese crackers don't. A lunch of avocado, nuts and tomatoes (one of my easy-to-assemble favs) or a premade & microwaved spinach & muschroom omelet is much soooo healthier than a bologna sandwich, and a green smoothie is oh-so-much better than a diet Coke. If you're interested in the topic of easy-prep (or delivered) whole foods, we can talk some more about it and how you can get some help.
(3) Some tubal preparations and "nutritional" supplements are loaded with starches. I'm a good example of a once-severe/now-moderate ME/CFS patient who would quickly deteriorate given anything with starches (they cause migraines and very bad Sjogrens for me).
(4) Anything that interrupts the natural movement of your GI tract interrupts your body's daily detoxification. Volume & fiber play a big part in this, and tubal feedings can mess with it.
(5) GI tubes require cleaning and upkeep. Best to put your energy into nourishing your body through a thoughtful, well-chosen diet that works for you rather than use your energy maintaining a tube. Just MHO.