What Nobody Tells You About Having a Feeding Tube
Due to gastroparesis I’ve had a jejunostomy feeding tube for almost two years now. I’ve learned a few things since I’ve had it placed; things no one thought to clue me in on back then.
You can never have too many syringes. And I mean never. I swear there are syringe-stealing gremlins around here somewhere.
Water is your friend. Flushing your tube is literally the most important thing about tubie life. A clogged tube is a terrible experience.
IV poles aren’t just for hospitals. Who knew? When you have a feeding tube, you’ll often receive an IV pole to put your feeding bag and pump on for your house.
Catch ya later, gross-tasting medication! That disgusting liquid medication that made you gag last time you had to take it? Yeah, now you can just flush it straight down your tube. No need for that unpleasantness anymore! Win!
You might become known as “The Backpack Girl.” I have a backpack that carries my feeds and pump with me when I’m not at home. Basically anytime I’m out I have it on, and my friends and family are so used to seeing me with the backpack they question when I don’t have it on.
Beeping will take over your life. Anytime you’re at an important event or quiet meeting you can count on your feeding pump to start beeping to let you know about a kink in your tubing or lack of formula. Without fail.
There may be a few more, but I can’t give away all the secrets.
We want to hear your story. Become a Mighty contributor here.
Erika R. is 22 years old and lives in Texas. She has multiple chronic illnesses including gastroparesis, asthma, gastroesophageal reflux, hemiplegic migraines, nephrocalcinosis, Ehlers-Danlos syndrome and more. She has had asthma since she was born, and the other problems started around age 10. She has been wanting to write about her story for a while now and is just now getting to it! Her Instagram is @erikanicoleruss if you’d like to follow her story there.
erika-r