For Erica, living with a feeding tube isn’t just a medical experience — it’s part of how she moves through the world every day. After nearly two years of navigating tube feeding, routines, and self-care, she has found ways to make care feel both practical and deeply personal. Her story offers an honest look at independence, routine, and identity beyond illness. Continue reading to learn how Erica integrates feeding care into her daily life and what it has taught her along the way.
Where Feeding Tube Fits Into My Day
After almost two years of having a feeding tube in March, it has become a part of my daily routine. I started with a dangler PEG-GJ and then after 6 weeks transitioned over to a GJ low profile feeding tubes. I now have a GJ mickey button and I utilize the j portion for feeds and meds and my g tube to vent. I set up feeds and run them 24/hours a day. I use Kate farms peptide 1.5 and pedialyte for my hydration. I administer feeds via an infinity pump and use an adaptive backpack to travel with my feeds to make them portable and accessible.
Over time, these steps stopped feeling overwhelming and instead became part of the rhythm of my day. The routine gives me structure, allowing me to keep moving while still prioritizing what my body needs.
What Care Looks Like When Nobody Else Is Around
It pretty much looks the same as if people were around. I change my tubie pad or split gauze when people are around and also when they’re not around. It doesn’t look much different. Care doesnt really look different. I care for myself and my tube around my friends/family and apart from them. I even have some accessories from tubie tech that assist me so I don’t have to rely on others. I have a stand that allows me to set up my feeding bag and set up my feeds.
Independence has been a huge part of my journey, and small tools make a big difference in helping me feel confident managing things on my own. Whether people are present or not, care remains something I own.
Who I Am Beyond My Illness
I am still me. My illnesses are a part of me but not all of me. My health and medical journey has shaped who I am and who I am becoming. I love that it’s made me more empathetic towards others from the personal health battles I’ve faced.
There are still so many parts of me that exist outside of medical care, and holding onto that identity has been grounding. Growth and empathy have come from experiences I never expected, but they’ve become meaningful pieces of who I am.
Tube Changes Are Rudimentary
Every 3-6months, I get my feeding tube exchanged via IR at the hospital. I get local sedation but pretty much get it down awake. It has become routine and I love all of the scheduling, nursing, and managerial staff that are all on board with my case that make it go the smoothest it could be. My last tube exchange was at the end of January and went smoothly because all of the team members were working together.
What once felt intimidating now feels predictable, and that consistency has helped me build trust with my care team. The collaboration behind the scenes makes a huge difference in how supported I feel during each exchange.
What Feeding Care Has Taught Me
My feeding tube and living with it has made me realize the importance of penciling time for myself and self-care. Whether it be when I crush and administer medicine or set up feeds, I am forced to make time for myself. and it has been a beautiful to witness. I love how much more self-care tume I make for myself now that I have a tube to manage.
Slowing down to care for myself has shifted how I see daily life. These moments are no longer just tasks — they’ve become reminders to be present, patient, and compassionate toward myself.
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