RD2BE Tube Feeding Story

Some may say that college is the best 4 years of their life. No one ever told me I would be fighting for mine. 

Throughout the last 7 years of my life, I have battled a multitude of rare and chronic illnesses that have reshaped my career path completely. Growing up I had illnesses off and on but my health didn’t start to spiral until high school. In high school I knew I wanted to get into the medical field, but I was unsure exactly of where I would end up and what exactly I wanted to be. It was not until I started having my own nutrition issues that I wanted to become a Registered Dietitian. 

It all started once I was having symptoms of a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). Essentially my collagen in my connective tissue does not work the way it should. I had a long list of symptoms ranging from daily headaches, joint subluxations, hypermobility, and tingling in my arms and legs. As years went on, I started getting different symptoms that later led to malnutrition. I always felt pain when eating, drinking, and even running. It was a constant pain that never went away. I went to many doctors and was constantly told that “it was just a tummy ache”. After so many rounds of blood work, x-rays, CTs, MRIs, endoscopies, and even a gallbladder surgery, I was still in so much pain.  I began to feel so uneasy with doctors and had trust issues with medical professionals. 

At the end of my freshman year of college, I was given my first feeding tube (nasojejunal) or what I like to call the nose hose. It went from my nose all the way to my small intestine to fuel me and give me enough nutrition. I had it for about 3 months before switching to a more permanent tube (which was luckily not on my face) called a GJ tube. Even though it was not an ideal form of nutrition for me, it did give me my life back. 

My tube allowed me to go back to school, have a job, and have enough energy to hang out with the people I love. It allowed me to pick nutrition as my major as I was living what I was learning about. 

While the tube helped me tremendously with my energy, no one warned me about all the complications that could arise. For example, waking up to formula all over your bed is definitely on my list of one of the worst things to wake up to. Or having your stomach try to digest the tube which surprisingly is not painful but just feels SO weird. (It makes a popping sound too that startles half my friends) They can also have complications of moving out of the GI tract which, trust me, you do not want to happen. 

I was not also prepared for the mental aspect of having a feeding tube. The stares and rude questions certainly were enjoyable. Mentally, I was destroyed and had a hard time coping with having a feeding tube and not being able to participate in social events evolving food. I quickly learned that mentality was everything when it came to everyday life. After talking with a therapist, I switched my mentality and taught myself to give myself grace. Because I was simply fighting for my life everyday and there was no need to get down on myself. Life is a gift and it is up to us on how we use it. 

So how did I end up with a feeding tube? 

After years of seeing specialists, I finally saw a vascular surgeon who diagnosed me with Median Arcuate Ligament Syndrome. Essentially, my celiac artery, which gives blood to most of my abdominal organs, was compressed, or shut off. This meant every time I ate or drank, blood could not rush down to help my organs digest and absorb my food. I had surgery to correct this and then a few months later was diagnosed with more vascular compressions. Last year I had a kidney autotransplant (yes, I basically had my own kidney moved around- which is so cool to think about) to fix Nutcracker Syndrome which is a compression of my left renal vein. I was able to finally eat again. The surgery was mentally and physically draining as my body had to fight adversity.

Finally, the fog had lifted and I was able to enjoy the aspect of eating again. I could go out to eat and actually…eat! I could go on coffee dates with friends and enjoy all the foods I had been dreaming about for years. 

Even though these surgeries have helped me so much to begin to eat, I still continue to struggle with food and drinks from time to time. I had about 6 months of eating completely without needing to supplement using my tube until I started having issues again. However, with chronic illness there are good and bad days. Let's just say that chronic illness does not take vacations. Sometimes I wake up and my pain is bearable enough to have a Starbucks drink or have some ice cream (because who would not choose ice cream as their food of choice!). And then there are other times I simply can not handle food and I use my tube to give me nutrition to keep me going. 

Since the beginning of my journey, I have sent and received many letters to girls who battle vascular compressions. It gives me an exhilarating feeling knowing that my story is helping others feel  accepted and even receive the diagnosis they longed for. Seeing other girls my age tackle college with feeding tubes and/or rare diseases gave me not only confidence but a community. It never fails to amaze me to get a text from one of my girls saying, “ I am so proud of you for just facing the world today”. 

In the future, I am hoping to become a Registered Dietitian and work with kids similar to me.  I want to be a Dietitian who can relate and help patients through the good, bad, and ugly of tube feeds and chronic illness. I want to make a difference in healthcare and help rare disease patients feel heard. 

My giveaways are clear and simple: perspective and community matter.  Perspective can shift and open new thoughts and possibilities into life. Meaning that you control your own emotions and how you wish to react to a situation by looking at it from a different view. For me, getting through the bad times meant looking at the positives and all that has been given to me. Not only is perspective crucial, but the sense of feeling heard is just as important. It is never easy to face difficult situations and feel like you do not have a voice. But the best part about life is that you do not have to face anything alone. I am always reminded that no matter the situation, you are never alone.

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Written by Emma Sommers

Hey, I'm Emma!

I'm currently a Junior at Purdue University studying Nutrition and Dietetics. I love everything about nutrition and have a passion towards helping people learn to love food and all the science behind it!  Learn more about the HSH offerings here.