Transcript Below the Fold:
Hi, I’m Leah the Sick Chick from Spoon Shares .com
Today I thought we’d talk feeding tubes.
Actually, there’s a lot to cover on this subject. Like a ton. So I thought I’d make a bunch of these videos covering all different aspects of the Tubie lifestyle. Maybe one a week? That might be a little ambitious for me, but I’ll try to go for one a week.
I remember when I was first told I needed a feeding tube I went onto google and all I found were end of life debates and archived articles on Terry Schaivo.
Boy did that take me back. But wasn’t entirely helpful.
So I thought I’d create the video series I would have liked to see when I was desperately searching the internet looking for answers.
Because not all people with feeding tubes are on life support.
A lot of tubies look like me!
That’s where I thought we’d start today. I’ll tell you my story so you can put everything into context.
Always know your information source’s biases!
I’ve had a feeding tube since July of this year, so this is all very new to me, and I’ll be sharing this stuff as I figure it out. But I’ll start at the very beginning so I’ll still be plenty ahead.
I got a feeding tube because I have gastroparesis, which means that my stomach decided to stop digesting about three years ago. It went on strike. And negotiations have not gone well so far. So I brought in a ringer.
I call him Birdie – because he digests the food for me.
Birdie is a J-Tube. Which means he goes into my jejunum, which is the intestine past the stomach. The other type of feeding tube is a G-tube, which goes into the stomach. This is for people who, for whatever reason, can’t swallow their food but their gastric system still works just fine. G-Tubes can be fed at a faster rate in a “bolus” feed. J-tubes, because the jejunum isn’t as big as a pocket as the stomach is, have to be fed at a much slower rate. Which means that in order to get all of the calories I need I have to carry (backpack) this thing around with me 24 hours of the day.
It’s kind of a horrible physical embodiment of the burden of illness weighing on my back. Like, if my life was a story I was peer reviewing in a creative writing class I’d be like “the backpack symbol, little obvious don’t ya think?”
But she gets me the calories I need without leaving me strapped to an IV pole so I’m thankful for her.
I named her Miss Piggy, because she’s always on my back. Y’know Piggyback. I really like to name things. (Show pump) and this is PITA. Because it goes off in the middle of the night and is a pain in the ass. It’s a Kangaroo Joey Pump so when I’m feeling more amicable towards it I call it Joey.
But I’m getting ahead of myself.
I have a J-Tube because it bypasses the stomach, which is the part of my body that doesn’t work because it digests too slowly.
Another type of feeding tube is an NG or an NJ tube. These are tubes that go into either the stomach or the jejunum, respectively, but go through your nose. It’s not a long term solution, it’s used for people who need it in the short term so they don’t have to have a tube surgically implanted, like I did.
Now, the feeding tube doesn’t mean I can’t or don’t eat orally. I have a bit of dysmotility – which is medical speak for lack of gastric digestion – in my intestine too, so I can only tolerate a feed rate of 35 mL an hour, which with my current formula is only about 1,000 calories. I manage to eat about 500 calories orally, which isn’t quite enough so I’m trying to increase to a more calorically dense formula and see how that goes.
So those are the basics. But there is a lot to cover on this subject. Keeping the tube clean, picking a formula, dealing with the backpack, social stigma, stoma pads, belts, swimming, physical activity, explaining it to family and friends, bloating, traveling with it, the procedure of having the tube inserted itself, and I will get to it all and more.
But first I’m going to start with the decision to get the tube and how to come to grips with it mentally and emotionally. That’ll be next week’s video. And I hope to see you there.
In the mean time I’d love to hear your stories or the things you want information about, whether you are a tubie, a soon-to-be tubie, or the loved one of a tubie.
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.