What Surprised Me Most About Adjusting to Life With a Feeding Tube

I’ve always had digestive problems. When I was a kid, I would vomit over practically nothing. We always chalked it up to sensitive digestion, and never really pressed the issue. These issues got progressively worse as I grew older. About five years ago, I was diagnosed with Ehlers-Danlos syndrome (EDS). Simplified, this means that my connective tissue acts more like chewed bubblegum instead of elastic, so a lot of my body’s systems don’t quite work how they should. It wasn’t until I received this diagnosis that my doctors began to suspect that my digestion problems were caused by something else.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My gastroenterologist ordered a gastric emptying scan, and I put it off for the better part of a year. I think I did this because deep down I knew what the results would be, and I wasn’t quite ready to face the facts. Eventually I gave in and got the test done, and later that day I got the phone call: the results were bad. My gastroparesis fell into the “severe” category. I’ll be honest, this is worse than I was expecting. Two weeks later I was admitted for malnutrition, anemia, a severe potassium deficiency that was causing partial seizures, and extremely low blood pressure. While admitted, they placed a surgical jejunostomy tube, and I started my life as a tube-fed individual.

Fast forward four months to today, and this adjustment is proving harder than I had initially thought. The tube feeds are fine. The hard part is not eating. I didn’t realize how large of a role that food plays in every day life until I couldn’t eat. I sit back and watch as family and friends eat like normal, and I smile and joke around with them, trying not to let on that I want to devour everything they’re eating. I don’t want anyone to ever feel afraid to eat in front of me. In fact, I want people to enjoy eating, because I can’t.

I want them to never take that ability for granted. I want them to enjoy each and every piece of food that they eat, and I want to hear about all of the amazing new recipes they’re trying. When there’s a major event like a holiday or celebration, I want to know what’s on the menu, and I want to be able to sit down with them and enjoy myself as they eat. I love to bake. I want to bake tons of new things I’ve been wanting to try, and give the goodies to my friends to be my taste testers.

I see you. I see you when you’re casually talking about a new recipe you tried over the weekend and you stop yourself or quickly change the topic when you realize I’m listening. Stop. I want to know about what you’re trying and cooking. Am I living vicariously through my friends and family? Perhaps. But, I will always want to be included when food is the topic of conversation, because I took the simple act of eating for granted, and didn’t realize how much it meant to me, until it was gone.