Posted by ImproveCareNow™ on February 04, 2025
Hello, I am Caroline! I’m 20 years old and live with a feeding tube. Since I was diagnosed with Crohn’s disease at the age of 10, my experience with feeding tubes has taken many forms. What can that look like? There are a variety of types of tubes which include nasal and surgically placed tubes, with many different reasons and uses such as nutrition, hydration, medication, or drainage. For me, the process of learning more about feeding tubes with my providers started when I was 12 years old.
I was in the middle of 6th grade and I was just coming off a high dose of steroids to treat my Crohn’s. Because of where the inflammation was located in my small intestine, it was affecting the absorption of the foods that I ate. This led to me losing weight and having difficulty maintaining weight, stunted growth, low hormone levels, vitamin deficiencies, low bone density, malnutrition, and fatigue. The way that feeding tubes can help in situations like mine is to ensure that all necessary calories, proteins, vitamins, and minerals are received, if that cannot be done solely by oral intake.
My caloric needs to get me back on the growth chart were way higher than I could manage by eating food alone; especially with active GI symptoms such as nausea, bloating, and fullness after eating small but frequent meals. In April 2016, my treatment consisted of a combination of medications and 3 months of Exclusive Enteral Nutrition (EEN) through a NG tube.
With the treatment of EEN, there was now a way to keep my body nourished and to provide the freedom of my ability to maintain my health and energy levels when it all seemed so uncertain. I was able to participate in life the way I wanted to as a 12-year-old. I continued playing soccer and dancing ballet by pausing my continuous feed and then tying the NG-tube into my ponytail or bun. Later in 2018, I got a G-tube placed to continue shorter periods of EEN and at other times Partial Enteral Nutrition (PEN), where I was eating by mouth during the day and then receiving formula through the tube overnight. While challenging, I adapted and began to sympathize with this unexpected lifeline. It's a reminder of the body’s fragility and its capacity for resilience.
Living with a feeding tube can affect many parts of our lives beyond having to eat in a different way. In the beginning, a feeding tube can present a huge disconnect from your usual sense of normalcy. From learning how to do daily maintenance and care, to understanding food cravings in a new way, to navigating school, friendships, and other’s assumptions and comments, to also grieving our health and what we once knew...the emotional and psychological impacts of living with a feeding tube can be significant.
When you have a feeding tube it's very important to take time out of each day to check in with yourself and recognize your needs and identify areas where you could use more support. My biggest tip is to schedule fun into each week or weekend, whatever that looks like for you. Discover someplace new, set up a time to meet with friends/your safe people in person or online, experiment with different fashion styles (with matching tubie pads of course)! While it may sound counterproductive, baking and cooking for others helped me to still be a part of the mealtime process. These activities provide something to look forward to and build motivation to get through the hard days where setting up your feeds is the last thing you want to do.
I have found that being tube fed is about adapting, finding new routines, and redefining what it means to care for oneself. While times are not always easy, tube feeding has given me a chance; for my future, personal growth, advocacy work, and the realization that nourishment isn’t just about food—it’s about finding the means to thrive, whatever form that takes.