Why I Love and Hate My G-Tube
“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have no idea what I’m talking about or referring to.
“He has a food fetish, likes to watch me eat, and is always around,” is another line I add because if there’s anything I’ve learned over the past 25 years of dealing with SMA, it’s that you need to have a sense of humor.
Maintaining a healthy weight
But maybe to understand this type of humor, which I’ll admit is a little dark and twisted, I need to take a step (or roll) back.
For the first 21 years of my life, I lived without a g-tube. Luckily, I was always able to maintain a healthy weight and caloric intake by mouth.
If I was sick and too tired to eat, my mom, dad, or nurse would sit by my bed and syringe a PediaSure into my mouth (ahh, delicious!). Now, you’re probably thinking this sounds like a lot of work where there’s an easy solution and, honestly, you’re right. But if you ever met my mom, you’d know she never chooses the easiest way. And I agree.
Drastic weight loss and weakness
But starting in 2017 I started to experience drastic weight loss. I was finishing an internship in Manhattan (commuting 4 hours every day) and transitioning to a full-time job in finance, working more than 40 hours per week. Despite having free breakfast, lunch, and dinner at the office, I was somehow losing weight and strength.
Spending almost 8 hours a day on the computer probably didn’t help with conserving energy, but it still didn’t make sense. Why now? What am I doing differently? I mean, I was at one point a full-time student.
From January 2017 to August 2017, I lost over 60 pounds. I was quite literally half the person I was. I barely had the strength to drive my wheelchair or chew and swallow an entire meal. The calories I was able to take in I instantly used just with the action of eating.
Accepting an inevitable feeding tube
There are only so many times I can reject the inevitable. One morning, after returning home from a family vacation, I woke up with severe stomach pains and was rushed to the hospital.
I was in fact eating myself from the inside and when I looked at myself in the mirror or pictures, I didn’t recognize who I was. Bone thin, I now understood that finally saying yes was the only way I was going to be able to live and have the energy to do anything with my life.
Gaining the weight back
A few days later Steve moved in and I guess giving it a name was a way to accept he was in my life. Thankfully I can still eat orally when I want and Steve is just there when I know I didn’t eat enough.
Why do I hate him? Well, as I said, he’s a bit of a stalker and isn’t very sexy. But, he did help me gain back all my weight and practically saved my life. For that, I guess we can be friends...sometimes.
Which emotional aspect of SMA do you find most difficult?