Quick Summary: Living with a Feeding Tube
Living with a feeding tube often involves daily routines that help manage symptoms and maintain health. In this story, Lindsay shares what feeding tube care looks like in her everyday life, including draining and venting her GJ tube, caring for sensitive skin around the tube site, and learning to listen to her body over time. Through her experience with gastroparesis and long-term feeding tube care, she reflects on the routines that support her health and the parts of her life that bring her joy beyond illness.
What Is It Really Like to Live with a Feeding Tube Every Day?
For many people living with chronic illness, feeding tube care becomes part of everyday life. While the medical side of feeding tubes is often discussed in clinical settings, the day-to-day reality is rarely shared in detail.
Lindsay has lived with a GJ feeding tube for over five years. Through daily routines, challenges, and small adjustments, she has learned how to care for her body while continuing to embrace the things that bring her joy.
Continue reading to learn more about Lindsay’s daily feeding tube routine, the realities people don’t always see, and the lessons she has learned along the way.
What Does Daily Feeding Tube Care Look Like?
My feeding tube care is kind of an all day affair, I do different parts of my tube care throughout the day but most of the care is usually in the morning. For example every morning I drain and vent the G part of my GJ tube, clean the tube, change out the gauze, and then tube feeds I will typically do either during the day or at night depending on how I’m feeling that day or what I’m going to be doing.
Over time, this routine has become an important part of how I manage my health each day. Spreading the care throughout the day helps me listen to what my body needs while allowing flexibility depending on how I’m feeling.
What Are the Parts of Feeding Tube Care People Don’t Always See?
Feeding tube care when no one is around is dealing with sensitive granulated tissue around the tube that has built up over years of having my tube. Putting polysporin on it to help keep it clean, the not so glamorous parts of having a feeding tube that people don’t always see. It’s also doing belly rolls when you’re draining or venting to help it come out when it’s being stubborn.
These moments are rarely talked about, but they are a real part of long-term feeding tube care. Managing these smaller details helps me keep the area healthy and functioning properly.
Who Am I Beyond My Illness?
When illness isn’t the focus I see myself as a kind, resilient, girly girl who loves accesssible makeup/beauty, and adaptive fashion. A girly who is a proud dog mom and cat mom, crystal lover and collector, who loves everything pink and bows, and tries to spread love, happiness, and support wherever I go.
My life is so much more than medical routines. The things that bring me joy, like beauty, fashion, and caring for my pets, are what help me stay grounded and connected to the parts of myself that exist beyond illness.
How Did Feeding Tube Care Become Part of My Normal Routine?
After having a feeding tube for over 5 years now something that feels ordinary now even though it didn’t in the beginning, is the process of draining/venting my tubes! It became apart of my everyday routine and the care that came with it and in the beginning it was definitely a weird sensation and something I had to get used to and adjust to. Now it’s become second nature and honestly something I look forward to because it significantly helps with my chronic nausea from my gastroparesis and excess bile because I don’t have my gallbladder.
With time, something that once felt unfamiliar slowly became routine. Learning how my body responds and what brings relief has helped make feeding tube care feel like a natural part of my day.
What Has Living with a Feeding Tube Taught Me?
Living with a feeding tube has taught me how to really listen to my body, respect what it needs and its limitations, and how to trust my gut feeling when I know something is wrong or potentially out of place. It’s also taught me that my needs are important and that getting some relief and help to stabilize my health as much as I can, is possible and worth the extra effort and maintenance that having a GJ tube/feeding tube requires.
Living with a feeding tube requires patience and self-awareness. Over time, I’ve learned that trusting my body and advocating for what I need is one of the most important parts of caring for my health.
Follow Lindsay on Instagram to learn more about her journey.
Frequently Asked Questions About Living with a Feeding Tube
What is daily feeding tube care like?
Daily feeding tube care can include cleaning the tube site, draining or venting the tube, changing gauze, and managing tube feeds. For many people, these tasks become part of a regular routine that helps manage symptoms and maintain comfort throughout the day.
What does venting or draining a feeding tube mean?
Venting or draining a feeding tube helps release gas, bile, or stomach contents that can build up and cause discomfort. Many people with GJ tubes or gastroparesis use venting as part of their daily care routine to help relieve nausea and pressure.
What challenges come with long-term feeding tube care?
Over time, people living with feeding tubes may experience things like sensitive skin around the tube site or granulation tissue. Managing these issues often involves careful cleaning, protective ointments, and regular monitoring to keep the area healthy.
Can feeding tube care become part of everyday life?
For many people, feeding tube care eventually becomes part of their normal routine. While it may feel unfamiliar at first, many individuals learn how to incorporate care tasks into their daily schedules and adjust based on how their body feels.
At Care+Wear, we believe patient stories play an important role in helping others feel seen and supported. By sharing experiences like Lindsay’s, we hope to bring greater understanding to what daily life with medical devices can look like.
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