Transcript below the fold:
Remember when I said I was gonna try to do one of these a week? That was funny. Try was the key word here. I will continue to try and most likely fail on that account.
Merry Christmas Eve Day, Happy first day after Channukah, and Merry Festivus for the rest of us!
So I guess in the vein of Christmas with all the feelings and the emotions and the happy happy joy joy, I’d talk about deciding to get the tube.
The first time a GI doctor suggested I get a feeding tube, my palms immediately began to sweat. This is the thing I have both feared and avoided since I got gastroparesis and knew this was a possible treatment plan.
The first GI who suggested the tube said that I had a few “last ditch” attempts to try first before we’d go to get the tube, so I had a little time to get used to the idea before I officially decided.
It was a little different for me then it might be for others because I had a choice in the matter. I could refuse to use the tube. I wasn’t starving or in immediate danger. I was just incredibly symptomatic all the time and didn’t have enough calories to have any sort of energy.
And my first reaction was to adamantly reject the idea. No freakin way I’m getting a tube sticking out of my belly. People watching this probably know what I’m talking about. I was also terrified of possibility infection — which turns out not to be a big problem at all with enteral feedings but I’ll get there – but I was just afraid of general complications from the tube. Not to mention the social stigma. I have an invisible illness, which can be frustrating because people don’t always believe you’re sick. But it’s also comforting because you can always hide if it you need or want to. This would make my illness visible for the first time, and I had a lot of mixed emotions about that, especially since I’ve always been a little private when it comes to my health.
You know, which is why I vlog about it on the internet.
But that’s another topic for another time.
So I was super against the whole idea, but then I thought about what the tube could do for me. I thought about not having to force myself to eat every three hours, which to people with stomachs that work doesn’t sound too appealing, but to a person with severe gastroparesis, it’s really awesome. I thought about being able to not eat any food on a flare day without worrying about making the flare last longer due to dehydration and lack of calories. I thought about not having to go to the ER when I have a vomit flare from dehydration. I thought about not spending 21 hours of the day laying in bed. I thought about hope, and that’s what drove me to get the tube. It was hope for improving my quality of life.
That doesn’t mean that it still didn’t scare the living shit out of me. When I visited my regular GI and he re affirmed that this was the right course and I should do it as soon as possible, I literally started shaking in the doctor’s office. The idea of it is just plain scary. It’s a serious change in lifestyle. I went home and cried my eyes out.
What helped me was, first, was gathering all the information so I felt prepared. The scariest thing in the world is the unknown, so I tried to arm myself with knowledge – wow that sounded dorky. Although it was kinda hard to find all the information I felt I needed to make myself feel prepared, which is why, again, I’m making these vlogs. So the thing that ultimately helped me the most was reaching out to people and admitting I was afraid and talking through it. I was lucky enough to be able to do that on my online support group full of fellow gpers who understood. I was really lucky to have that because I didn’t want to make my friends and family nervous by knowing I was nervous…like I could hide that. But emotions make human beings quite silly.
So, to anyone about to get a tube or considering the tube, it’s okay to be afraid or angry or sad. But it’s not as hard as it seems. It’s a change, but it comes one step at a time and you will have medical professionals to help you through it. And you’re welcome to contact me via social media or email if you want some personal advice. You will get used to your new normal. The anticipation before the new normal is one of the worst parts, emotionally. At least it was for me.
Gather information, lean on others for support, and most of all, concentrate on the hope. This is a medicine. It can help you get better. I think that idea makes it a whole lot less scary.
Subscribe to my channel to get more feeding tube vlogs and check out spoonshares.com for more tips on chronic illness as well as a chance to share your expertise.
Sending spoons and love. Take care.
About the Author:
Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.