Feeding Tube Awareness Week: What Tubies Wish You Knew

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “Feeding Tube Awareness Week” with an image of a red heart with an outline of a feeding tube. In the bottom left hand corner is the logo for Thee Crohnie Grace Blog]

This week starts off Feeding Tube Awareness Week, but for me I spend the majority of my time educating and bringing awareness to such things. So I will be discussing only briefly what feeding tubes are and what they do and then I will be giving some quotes from other Tubies on what they wish people knew about feeding tubes!

So what are feeding tubes? They are an alternative way to receive nutrition when it would otherwise be very hard for someone to receive nutrition through oral intake. There are various reasons as to why people need feeding tubes. Some reasons include malnutrition from Crohn’s disease, GI paralysis from various illnesses, Gastroparesis, inability to swallow from various causes, MALS, and many other reasons.

There are many different types of feeding tubes: Naso-gastric, Naso-jejunal, G tube, GJ tube, J tube and so forth.

A Nasal tube is inserted through the nose and either goes into the stomach (gastric) or further into the digestive tract and into the small bowel or jejunum.

[Image on the left shows a white silhouette of a man with his head turned to the side but body facing forward, it shows a feeding tube as a dark blue line going down the nose and esophagus and into the stomach, then shows a lighter blue showing where the nasal jejunal tube would be placed. Image on the right shows a white feeding tube coiled up on a grey background with a red end.]

With a nasogastric tube people are often able to insert the tube themselves and remove it. With a nasojejunal tube  they are often placed by a radiologist since they must be guided into the small bowl under x-ray.

With other tubes like a G, GJ, or J tube, they are surgically placed and inserted straight into the stomach or jejunal.

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[Image shows a tan silhouette of a person with their head to the side showing a simple doodle of the stomach and intestines. It shows a direct G-Tube leading into the stomach.]

With a GJ the G tube has an extension tube that goes into the jejunal. And with a J tube, it goes just straight into the jejunal.

So What Do Other Tubies Want You to Know About Feeding Tubes?

  • “Your throat can kill you if you have a simple cold… feels like something is rubbing raw against a cut open skin when swallowing.”

“People stare at you in public.”

“When you get your tube  caught on something and you try to save it by falling or ruining something cause you’d rather not have to go to [the ER].”

“Waking up in a puddle of bile and formula…while you sleep and it disconnects.”

-Sydney Rohmann

  • “It’s okay to eat in front of me even when I can’t and to invite me to hang out even if it is food-centered. I hate feeling left out simply because they don’t want to hurt my feelings or “make me hungry.” -Elizabeth Schmidt 

 

  • “Just because someone has a feeding tube doesn’t mean they can’t eat some things orally. In fact some people (not all people) can still eat a little bit orally even though they have a feeding tube.”

“I also wish people would just ask when they have a question instead of just staring. We are still normal people. We just have a medical issue…”

-Riley Skapik

 

  • You can have a feeding tube and not be dying.
  • Anyone of any age can have a feeding tube.
  • They are not always comfortable. For some people they can be quite painful.
  • They are life saving devices.
  • It is not a scary thing.
  • It is possible to throw them up if you’re not careful. And it is not enjoyable.

 

I am a college student who has had an NJ tube over a year now, and before that had an NG tube for almost a year. Soon, hopefully, I will be getting my GJ tube placed since my nasal passages have been developing more scar tissue which can make placement harder. But I am grateful for my feeding tube helping me maintain my weight and help me stay nourished.

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[Image shows me in a blue and grey striped shirt with my hair pushed back by my glasses, my hand is resting on my face. I have my feeding tube hooked up. At the bottom in the middle is a red heart with a feeding tube outline and in white text in the heart says “I am a tube”.]

 

 

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