Katie is a Care+Wear community member and chronic illness warrior living with a feeding tube. Over time, feeding tube care has become part of her daily rhythm. From mornings to family dinners to quiet nights, her routine reflects how care weaves into life rather than standing apart from it.
Keep reading to hear Katie share her experience in her own words.
Where Feeding Tube Care Fits Into the Day
My feeding tube care fits into my daily routine right away. It’s the first thing I do in the morning, cleaning up dinner that ran overnight and setting up feeds for a few hours during the day. It also fits right in during dinner with my family.
This is how my mornings begin, and it sets the tone for the rest of my day. Feeding tube care isn’t something I do once and move on from. It weaves in and out of my routine alongside everything else that makes up my life.
I’m lucky that I’m able to eat some orally, and having my feeds around the same time makes it feel like I’m eating right along with my family. When it’s time for bed, everything gets hung on my little pole, and I doze off while the feeds do their thing.
Being able to share those moments with my family matters to me. It helps feeding tube care feel less isolating and more like part of a shared experience, even on the days when it feels hard.
What Feeding Tube Care Looks Like When No One Is Around
Tube care when no one is around looks like flushing the line multiple times a day to keep it from clogging, and still having moments of fear when it doesn’t flush the way it should.
These are the parts of care that don’t always get talked about. They’re quiet, repetitive, and sometimes stressful, even when I know what I’m doing.
It also looks like setting up formula and water bags in silence, followed by the loud beeps from the machine in the middle of the night letting me know the feed is done.
Those sounds have become familiar to me. They interrupt sleep and routines, but they’re also a reminder that care is happening, even while I rest.
Who I Am When Illness Isn’t the Focus
Strong, beautiful, Badass, compassionate, loving, hopeful.
These are the words that come to mind when I think about myself outside of illness. My feeding tube is part of my life, but it is not all of me. I carry so much more than my diagnosis or my care routine.
What Feels Ordinary to Me Now
Waking up and still having a feeding tube in my face. Or doing the daily feeds, it’s part of routine now.
Things that once felt overwhelming have slowly become familiar. What used to feel like a constant adjustment now feels expected, even ordinary. That doesn’t mean it’s always easy, but it does mean I’ve learned how to live alongside it.
What Living With a Feeding Tube Has Taught Me
My body is wicked strong. My body can take a lot (even though it shouldn’t have too). My needs have changed and are constantly changing. They may look different now and they may not look the same ever again, but I know that my body and I can get through it together.
Living with a feeding tube has taught me to pay attention. To notice when I need rest. To accept that my needs today may not look like my needs tomorrow.
I make sure to take care of my body and that I try to listen to her needs and wants. I make sure that when going about my day that I take rest so that my body can keep up and to keep going.
Rest has become part of how I keep moving forward. Listening has become just as important as doing.
Having the feeding tube helps with all of these things right now and for that I’m really grateful.
Gratitude doesn’t erase the challenges, but it helps me hold space for what is working and what is supporting me in this season.
Why I’m Sharing My Story
Feeding tube care often happens quietly, but sharing experiences like mine helps make space for understanding and visibility. This is just one version of what life with a feeding tube can look like, but it’s mine, and it deserves to be seen.
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