Living with a Chronic Illness and a Feeding Tube
Medically Reviewed by Laura Urias, MCN, RD, CSO, LD, Registered Dietitian
Hi, tubie friends! It’s Ava! 🐾 I’m so happy you’re here! Living with a chronic illness can mean extra doctor visits, medicine, and, for many of us, a feeding tube. Some days might feel easy, while other days can feel a little harder—and that’s okay! Having a feeding tube is just one part of who we are. It helps our bodies get the nutrition and hydration we need so we can keep growing, learning, playing, and doing the things we love.
Let’s talk about some ways we can feel strong and confident on our HEN journey!
🐾 Big Feelings Are Okay
Living with a chronic illness can bring lots of different feelings. Some days you might feel happy and excited, while other days you could feel frustrated, worried, or tired.
Guess what?
Every feeling is okay!
When you’re having a tough day, talk to someone you trust—a parent, grandparent, teacher, nurse, doctor, or another grown-up. Sharing your feelings can help you feel better, and remember…you are not alone.
🐾 Learning Something New Every Day
At first, having a feeding tube might seem like a lot to learn. There are feedings, supplies, and tube care to understand.
But every day is a chance to learn something new!
Maybe you helped gather your supplies or flushed your tube with help from a grown-up. Every little step helps you become more confident.
Learning takes time, and that’s something to be proud of!
🐾 Your Family Is on Your Team
Your parents, grandparents, brothers, sisters, and caregivers all want to help you stay healthy.
They cheer you on, help with your feedings, and celebrate your victories right alongside you.
Remember to tell them when you need a hug, have a question, or just want someone to listen. You’re all working together as a team.
🐾 Keep Being YOU!
Having a feeding tube doesn’t stop you from being YOU!
You can still:
- Go to school
- Play with friends
- Read books
- Create art
- Celebrate birthdays
- Travel with your family
- Dream big
Sometimes your family might pack extra feeding supplies or plan your schedule around your feedings—but that just means you’re ready for your next adventure!
🐾 Celebrate Every Victory
Did you help with your tube care today?
Did you learn something new?
Did you have a great clinic visit?
Did you try a new activity?
Those are all BIG wins!
Every small step helps you grow stronger, more confident, and more independent.
🐾 One Last Tail Wag…
One of my favorite things about being part of the tubie community is knowing there are so many amazing kids just like us.
We may all have different stories, but we share something important—we’re brave, strong, and never alone.
Our feeding tubes help our bodies get the nutrition we need to grow and stay healthy, but they don’t define who we are.
We are kind.
We are courageous.
We are strong.
And together, we’ve got this! ❤️
Sources
Feeding Tube Awareness Foundation. Resources for Families. https://www.feedingtubeawareness.org
The Oley Foundation. Resources for Home Enteral Nutrition (HEN) Patients and Caregivers. https://oley.org
American Society for Parenteral and Enteral Nutrition (ASPEN). Patient & Caregiver Resources. https://www.nutritioncare.org/Patients/
