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A Feeding Tube Patient’s Reaction to 'Feeding Tube Diets'

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woman with a feeding tube

For years I have seen articles promoting “feeding tube diets,” and I usually keep my disgust private, but today I am fresh out of patience.

As a patient who has relied on a feeding tube to live, there are a few things I want fad dieters to know.

1. There is nothing glamorous about a feeding tube. Your face may break out because you have tape stuck to your cheek 24/7. The tube is either plastered to your face or jutting out of your abdomen. It can make for a self-conscious experience. Pumps beep in the most inopportune places, like the middle of a movie theater. Sooner or later, you will wake up in the middle of the night, bathed in formula. Want to blow your nose while sporting that nasogastric tube? Think again. And don’t get me started on granulation tissue.

2. I am
 not sympathetic when you complain about the problems this diet has caused you.  I totally understand losing weight and getting yourself healthy can be a daunting task. You have to be motivated and practice obscene amounts of self-control. With that said, if a feeding tube is your diet of choice, I’m not feeling bad for you when someone stares or when you’re missing your favorite foods. You chose this. As far as the half million Americans who depend on feeding tubes for survival are concerned, you are in no position to complain.

woman with a feeding tube at the hospital

3. I would give anything to be tube-free. In full disclosure, I have been eating most of my nutrition by mouth for the last six months. For the five years before that, however, I dreamed about eating a complete meal. Literally. I actually had dreams about food. You don’t realize how many of life’s social gatherings revolve around food until you can no longer eat. (The answer is all of them.) Even though I eat fairly regularly now, it is likely I will never be able to have my feeding tubes removed. My autoimmune disease could reappear at any time, and I’ve had too many surgeries to create new tube sites. I think I speak for all Tubies when I say there aren’t many things we wouldn’t do if it meant we were able to live a tube-free life. So if you are physically able to eat and live without feeding tubes, we don’t understand why you wouldn’t.

Society has put a lot of pressure on us to look “perfect.” I know this has greatly influenced the trend of feeding tube diets. But if there is one thing I have learned from five and a half years of feeding tubes, it’s that when given the option, I will always choose the food.

Originally published: July 17, 2016
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