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Yeah yeah, one a week means once a month. You know the drill by now.

So where were we? Hospitals. I ran through the surgery and hospital stay in the last video, now we’re going to talk about the process of getting discharged and coming home with the tube.

It’s like bringing home a new baby only a lot less exciting for your parents. And less crying…sometimes.

While you’re in the hospital you’ll meet with several different people.

1) Someone from your surgical team – they’ll just give you basic information on caring for the site, instructions on exercise, ya know, your basic discharge information. You’ll also be given a follow up date to have your surgeon check on the surgical site.

2) Your nutritionist – They will decide the type of formula you need, the rate, method of feeding, etc. You’ll have a follow up with them two weeks after your appointment, at the same time you have the follow up with your surgeon. After that your nutrition will be handled by your home care company. Which brings me to…

3) Social Worker Nurse – They will explain everything, set you up with the Home Care company, your home nurse program (not always the same company – it wasn’t for me). They will walk you through everything, and make sure that the home care company will have all the supplies you need at your home the same day you’re discharged. If the home care company cannot get to your house, you will not be discharged that day.

Sometimes you’ll meet with a rep from your home care….I personally can’t remember if I met with someone from my home care company or not…it’s all very fuzzy. So, like I said in my last video, if you can have someone with you at this point to help navigate all this stuff with you, like a spouse or a parent, that will make your life much easier. If you don’t have anyone to help you, especially with handling the bills and unexpected expenses, take advantage of the hospital resources and ask to speak to a social worker. They can alert you to any government or community programs that might be able to help you.

There is no shame in taking a part of these programs if you truly need them. That’s what they’re there for. Everyone needs a helping hand once in a while.

When you get home, your home care company will arrive with the equipment you need. For me that was an IV pole, bags, formula, syringes, pads, and a kangaroo joey pump.

Shortly after that, a home nurse came and showed me how to use all the equipment, how to care for the site, etc. She came to see me three times a week for the next few weeks to make sure the stoma was doing alright, that I was doing alright, and that I was using all my equipment properly.

The first few weeks after the tube were really rough for me. It was very hard to tolerate the formula at first. I had horrible acid reflux, I had trouble sleeping because the surgical sites made it hard to get comfortable, I was nauseous and bloated…it was rough. But my system did adjust, and I found the rate that I could tolerate. All the nurses told me that the difference in rate was so negligible that it couldn’t make a difference…obviously these people didn’t have gastroparesis. For me, rate made a huge difference. And when I decided to go slow and steady with my rate and bump it up 1 mL at a time when I felt comfortable, I had a significant improvement.

I no longer see any of my home nurses but I still work with my home infusion company, because they’re the ones who send me refills of my formula, my bags, syringes, etc. I was also set up with dietitian at the home infusion company who handles all my nutrition needs, since you don’t see the hospital nutritionist after your 2 week follow up, and they also have a pharmacist who answers questions about what is and isn’t safe to put through the tube.

So next time we’ll have a little show and tell, and I’ll show you how I hook up to the tube!

In the mean 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.   

The post Feeding Tube Vlogs #4: Coming Home With the Tube appeared first on Spoon Shares.

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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.   

The post Feeding Tube Vlogs #3: Getting the Tube Implanted appeared first on Spoon Shares.

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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.   

The post Feeding Tube Vlog #2: Deciding to Get the Tube appeared first on Spoon Shares.

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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.   

The post Feeding Tube Vlog #1: About Me and General Info appeared first on Spoon Shares.