I’m 26 years old and a complex patient. I come to Mayo Clinic every four months for jejunal and gastric tube replacement (two separate ones), among other studies for chronic and rare diseases. I currently sit and listen to my team of doctors, nurses and dietitians talk about the hope that one day I can rely on natural nutrition, a.k.a. food.
But I don’t think I should think like that. Both my parents are doctors and it’s tough for them to see me struggle, to be tired all day, to lack energy to be social sometimes, to not want to sit through a restaurant meal and watch everyone eat. They also wish I didn’t have this tube. Sure, I can drink a beer or two on a good day, and I can drink soda or Gatorade, but the truth is, I’m always hungry.
Aside from multiple complex illnesses, I have severe idiopathic gastroparesis, which causes me to throw up almost everything that isn’t a clear liquid, and sometimes even that. I have an IBD, which makes me lose nutrients as well. But that doesn’t mean I’m not starving inside.
People see my tube and assume I must be fed, and medically and nutritionally speaking, I am. But I’m not full, I don’t even remember the feeling. I wish I could say that I hope to eat again and get rid of my tube, but I’d rather not. I’d rather not get my hopes up, and then be let down again.
So, my tube is my best friend. I call him “tubie.” I sometimes use him to fight discrimination by unexpectedly showing it to a security agent that doesn’t believe my disabilities, or to an unwelcome commentator on my weight and diet. But more than that, tubie is the reason I am alive. I love my tube because it gave me life again. Before, I was a living zombie, severely malnourished. One that almost had a heart attack three times in six months.
Tubie is and will always be – even perhaps when I don’t need him – the reason I am here today and will be here tomorrow. I even took inspiration from my tube to study Nutrition and Dietetics, because tubes save lives every day.
February 4-8 is Feeding Tube Awareness Week, and it may be important that we all take a look around us, because many people that look perfectly fine are tube-fed. Some kids grow up to be healthy adults thanks to tubes. And some of us have no time limit on our tube. To all my fellow tubies, I see you, and I stand with you.
Getty Image via Martinbowra
Juliana Tamayo is a 28-year-old suffering from gastroparesis, lupus, POTS, chronic intestinal pseudo obstruction(CIPO) and eosinophilic esophagitis (among some). She is a journalist and registered dietitian (RDN) from Colombia living in Washington, DC. She loves to dance, run, golf, write and read when her body permits it. Illnesses are tough, but she finds comfort in writing about it.
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