TRANSCRIPT BELOW THE FOLD
So apparently I’m just gonna start every video laughing about how I said I’d do one of these a week and can never get that done.
Every vlogger has to have their schtick, I guess.
I’m Leah from SpoonShares.com and these are my feeding tube vlogs.
Today we’re going to talk about the procedure to have the tube implanted.
There are two ways to go about this, either to have it placed endoscopically in an outpatient procedure – when they do this it’s called a PEG tube – or to have it surgically placed.
The endoscopic procedure is pretty low key. You have mild sedation and are sent home afterwards. I can’t really speak to how painful that procedure is, though, because I had it surgically placed. I also had a stomach biopsy at the same time – I mean, while they were in there they might as well take a slice – so my pain levels were probably different than yours will or would be, unless you also have a biopsy done, which might be a good idea if you also have gastroparesis. It can help them establish whether the damage is in the muscles or nerve which can inform what medications they might try.
But back to the surgery. If you have the surgery they will put you completely out with an anesthesiologist, so you won’t feel a thing. You’ll just have a nice deeeep nap.
I did have a pretty significant pain level when I woke up, but that was because they wanted to give me morphine and I’m slightly allergic, so they had to go fetch a new pain medication. So that was a fun twenty minutes. But the pain isn’t as bad as most other surgeries. I had a gastric pacemaker placed and that was definitely more pain post surgery than this, so I have to imagine if you’ve had any other surgeries, this one will seem like a cake walk.
But because they extracted some of my insides, they gave me everyone’s favorite happy button (the pain pump) filled with dilaudid. So I was pretty okay with the whole situation for a few hours….until the surgeon came in and told me I should really not use the happy pump because it will slow my gastric motility and make adjusting to the feeding tube difficult.
The term explosive diarrhea was used — and that was enough to keep me off the sauce.
Because of the biopsy they didn’t want me to swallow anything. This was a problem because
The anesthetic gives you serious cotton mouth. But they gave me a little sponge on a stick in ice water to wet my mouth for that.
That meant they wouldn’t give me any other pain meds orally. For some reason this hospital – which was Pennsylvania Hospital- didn’t have IV tylenol despite the fact that I was able to get that at other hospitals. So they gave me a suppository…which is a pill you shove up your butt. It sounds a lot worse than it is. But the thought of it was pretty nasty. But it’s not hard it dissolves right away and you get some pain relief.
But these are really only things you have to worry about if you also get a stomach biopsy with your procedure. Otherwise, they’ll probably just give you regular tylenol for the pain and it won’t be too hard to manage. By the second day tylenol was truly enough to manage the pain down to a 3.
They will keep you overnight if you have it done surgically, to see how you tolerate the feeds. My experience was that they didn’t want to send me home until they had bumped my feed about to 55mL an hour, a feed rate I still can’t tolerate over 6 months later, and trying to get it that high made me incredibly sick.
I always say this about any hospital stay, if you have this option, have a friend or family member stay with you and be your advocate. No matter how capable you think you are, when you’re strapped to a hospital bed and miserably sick, it’s almost impossible to properly advocate for yourself in the giant machine that is the hospital. For example, I was in the hospital for about 4 days I think? I think I’d still be there if my mom hadn’t been there to help arrange everything for when I got home and to call my GI to get me sprung the hell outta there.
There is a lot to arrange while you’re in the hospital. On the second day there were people coming in and out all day. And that’s a much larger topic than I originally thought so we will discuss that next week. Or next month. Whichever my spoons allow for.
If anyone has had their tube placed endoscopically, please share your experiences in the comments or on spoonshares.com! If you want personal advice feel free to contact me via social media or the Spoon Shares contact page, information in the box underneath me.
Subscribe to my vlog for more feeding tube tips and check out spoonshares.com for more spoonie tips and a chance to share your own expertise.
Have I plugged the site enough in this video? I don’t think so.
Until next time, I’m 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.