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When There’s No Manual for Navigating College With a Feeding Tube

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There are questions every girl asks herself before going to college — “Am I actually going to make friends?” “Does the freshman 15 really exist?” — answers to most of which can be found by reading Cosmopolitan or talking to older siblings. However, the summer before my freshman year I was forced to ask myself a different set of questions: “Will my roommates be annoyed with my feeding pump?” “How will my friends react when I tell them I throw everything up?” And the most important one, “Will guys still find me attractive with a feeding tube?” The summer before college is supposed to be one of the best, but mine was riddled with anxiety as I tried to dissect the answers to these questions.

For the past 10 and a half years, I have suffered from two gastroenterological conditions: rumination syndrome, a rare disorder characterized by the regurgitation of undigested food recently after being eaten, and gastroparesis, which means my stomach muscles are pretty much paralyzed, resulting in delayed gastric emptying. Due to these co-occurring illnesses, I am unable to keep food down, resulting in me being fed through a J-tube in my intestine and having a gastric pacer in my stomach to regulate my nervous system. I had always known going to college with a feeding tube could be a possibility, but I just assumed things would be solved by that time.

Going to school, I knew I had two options. I could either hide my illnesses or I could be open and upfront about them. I chose the latter. A few weeks before leaving for school, I was wearing a crop top that put the clear plastic tube on my stomach on full display, and my dad asked me if I was planning on wearing crop tops at school. I thought his question was ludicrous. My tube was part of me, so why would I hide it? Back at home my friends had become so desensitized to seeing my tube and scars that they often forgot about them. Part of me assumed this was how people at college would act.

It wasn’t.

When most freshmen want to blend in, I was standing out. It’s hard to ignore the girl with something “weird” on her stomach. One of my friends was dating a senior, and soon he and his friends began referring to me as “Feeding Tube Girl,” a nickname which was soon adopted by other groups. The nickname never really bugged me; I knew it was just shorthand, but I was annoyed by the attention it brought upon me.

For most situations in life there is some sort of manual you can consult when you need help, but there is no such manual that can prepare someone with a chronic illness for college. There is no article to look to when your feeding tube leaks all over a boy’s bed, or when you have to correct someone that the thing on your stomach is not an exotic belly piercing. There is no app that can feed you the perfect response for when a guy asks if you have puked yet or refuses to get you a drink because “you’re going to throw it up anyway.” No articles exist on Total Sorority Move that tell you the proper rush etiquette for turning down yummy snacks because you don’t want to leave to go to the bathroom, or how to dress appropriately to accommodate for your feeding tube.

Going to college with a chronic illness means having to navigate a new world without much guidance, but that doesn’t mean you have to do it alone. Although my friends cannot relate to my condition, they do their best to help me through it. Earlier this year I experienced problems with my pacer, resulting in me being hospitalized. My best friend drove me to the emergency room and stayed with me until 3 a.m. Once I was admitted, she came to visit every day and even had her mom come down to be with me during a procedure. Not only did my friends come visit me in the hospital, but they also remind me to use my feeding pump when I don’t want to, help me stick to my gastroparesis diet and help me avoid situations that could be harmful to my pacer.

When I went to college, I made the choice to be honest about my chronic illnesses — and even though I have had to deal with some ignorance, I could not imagine doing college any other way. My conditions are a part of me, and running away from them would be denying who I truly am. A part of college is about discovering who you are, and I am doing just that.

group of five college women
Mady (second from left) and her friends at college.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: February 24, 2016
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