Okay, it’s not Valentine’s Day anymore, but I started writing this post on Valentines Day before my brain gave up, and this image was too cute not to use.

You’ve asked, both on social media and in life, and here I will answer!

Just a primer, since my answers are limited only to my experiences:

• I have a surgically implanted j-tube, which means it goes into my jejunum, which is the intestine past the stomach. It also means that my feeding tube goes through my abdominal wall instead of through my nose.
• I have a feeding tube because I have gastroparesis (secondary to Ehlers Danlos Syndrome — Type III Hypermobility), a syndrome where your stomach doesn’t digest food at a normal pace. It has varying severities, and mine is severe enough that I need a feeding tube in order to get all the calories I need in a day.
• I’ve had my tube for about a year and a half now, and I am still experimenting to find the right rate/timing/formula to best relieve symptoms and maintain adequate nutrition. This is a longer process for me than it might be for some others (depending on their condition), because I still have dysmotility in my intestines as well as my stomach, so bypassing the stomach only bypasses part of the problem.

On to the questions!

Can/Do/Why do you still eat food? 

This is probably my number one asked question, and it varies depending on what I’m doing in the situation. Yes, I can and do still eat food, and I both want and have to eat orally. On average, I get about 500 calories of food from my formula. The rest I get from oral food (a lot of that is, unfortunately, sugar and soda from my ginger products, but I’m working on that!) It’s a bit more complicated putting food into a jejunum than a stomach, because the stomach is a giant pocket designed to hold a lot of food and distribute it slowly down the intestine. The intestine can’t hold as much at once, and so you have to put food into it more slowly. And when your intestine moves at a delayed rate, like mine, it gets even more complicated. So I pump food into my intestines at a very slow rate, hence the low amount of calories from my feeding pump, and the need to supplement with oral food. Actually, some days, when I’m in a symptom flare, it’s easier for me to orally eat a piece of bread than pump formula (because it absorbs some of the stomach acid).

Do you still get hungry/cravings/want food?

Okay, this actually may be my most asked question.

Truth: I have not been truly hungry in four years, since I developed gastroparesis. I do get brain signals that I needed food, like lightheadedness or a headache, and my stomach will feel calm enough that I feel like I “can” eat, but my stomach doesn’t really “pang” for food. But I will get cravings. Oh lord, do I get cravings. I was in the hospital for constant vomiting and dehydration, and I was flaring badly enough that I literally couldn’t keep down chicken broth, and yet I remember seeing a food commercial on my TV set and desperately wanting whatever they were advertising. It’s a very confusing feeling, when your stomach revolts at the idea of anything going inside of it, but your taste buds are demanding a Chipotle beef burrito with extra sour cream and a side of guac (No, I can’t eat that even on a good day!). And yet it’s one that I have constantly. I try and use tea, preggo drops, and ginger candy to control my cravings when I don’t feel well enough to eat.  But sometimes I give in and eat some food (within my allowed diet) when I know I shouldn’t, and it makes me sick. This has led to the acronym GTAF (Got Tricked, Ate Food) that I often use with Catherine over at Finding My Miracle. Don’t get me wrong, I don’t always have cravings. Sometimes I literally will not let my mom ask me about food from the grocery store because I can’t even stomach the idea of any form of food. And sometimes I’m just not even thinking about it, and I can see food without being bothered. But if I haven’t had food (enteral or oral) in a while, that’s when the cravings kick in big time, because my brain is telling me it needs food while my stomach is hiding in a treehouse with a “No Food Allowed” sign.

So, that is a long and complicated way of answering: “No, but yes.”

When you disconnect your feeding tube, is there an open hole to your intestines? 

Yeah, and let me tell you, it is really useful for storing petty change.

Sorry, sorry, I promised no snark! There is an open tract in my abdomen leading to my intestine, but the tube has a cap so that when it’s not in use, it stays completely shut. Let me tell you how fun it is when that opens in the middle of the night and there’s stomach fluid all over you!

Actually, that’s only happened with my med port on my extension set when I’m hooked up to the pump. The plug to the actual feeding tube is pretty tight and hard to open without intent.

There is still a tiny bit of “wiggle room” around the tube, but not enough to cause any concern for something getting inside. The real issue is drainage coming out, which is why I always have a stoma pad, as pictured above. And, because I am mentally a four year old, my stoma pads are all Disney, dog, pirate, or Harry Potter themed.

What’s the best part of having one/how has it improved your life?

Actually, in a lot of ways!

• Food isn’t the villain I have to battle anymore. Before I had my tube, in order to get enough calories out of the small amount of food I can have at a time, within the limited part of the day I was well enough to try to eat, I was eating every two hours. This doesn’t sound like a problem for a healthy person, but when you’re nauseous and cramping all the time, it’s slightly torturous. So having that burden lifted off of me was an immeasurable relief.
• I get more freedom with the food I do eat! Since I don’t have to worry about saving my stomach space for only the most nutrient dense, high calorie, minimally filling, low fat/low fiber foods, I can eat the food I really want to eat instead. Well, not all the food I want to eat; I still have to follow my strict diet. But instead of a tasteless protein drink, followed two hours later by a Macrobar, followed by cream of wheat with veggie puree mixed in, I can just have smoked salmon with avocado on toast and a few low fat gingersnap cookies, then call it a day food-wise, and feel like I can still get the nutrition I need while actually enjoying the food I did get to eat. And because I eat less food, I can be ever so slightly riskier with the food I do eat.
• I’m healthier. This is the obvious one. Not only does having more proper nutrition help my symptoms, so does the lessening of the nausea that comes with not having to put all my food through my stomach anymore. Plus, taking (some) of my meds through my tube instead of by mouth turned out to be a big game changer in terms of improving symptoms, because, turns out, medicine works a lot better when it’s digested at a normal rate!
  
• I get to stare at people. Okay. This one is weird. But I’m pretty weird. And also kind of awkward. So…I love to people-watch. I like to make up stories about them and guess things based on their appearance/what they’re doing, because I’m secretly Sherlock. Y’know, if he were significantly less smart. 
  But the problem is that, because I’m so horrible and awkward, people always notice I’m looking at them immediately, and I have to look away. But, when I’m out with the feeding tube, people are either already staring at me or afraid to look at me, so I figure I can stare at whoever I want. And I enjoy that way more than I should.
  
• Oh, also, sometimes when I’m in a place where there’s a sign that says “absolutely no food or drink of any kind beyond this point,” I smile slyly and walk by with my backpack like I’m some sort of badass loophole finder. “Oh yeah, sign? Any kind? Didn’t see this comin’, did ya?”

Is the site of the tube ever painful?

For me, luckily, no. Occasionally, I’ll feel some muscles pulsating around the tube that feels a bit uncomfortable, but it typically doesn’t last too long. Others aren’t as lucky, and do have pain around their tube site, but that’s not the norm. More common is to have granulation tissue form around the tube site (because the body gets confused and wants to close the hole we’ve put into it), and that can definitely sting. I have had this twice, and luckily for me it was burned off with silver nitrate sticks by my Interventional Radiologist (who switches out my tube every six months or when there’s a problem, like the balloon holding it in pops or it gets clogged), and as long as I keep a clean stoma pad to wipe away the drainage under my tube and apply topical ointment twice a day, it stays away.

Does the formula/water feel like anything going in?

The formula goes in at such a slow rate that I don’t feel it. But whenever I flush water to clear out the tube/hydrate? Yes, I feel that. And I wish I could describe what it feels like, but I cannot. It’s weird, but not painful.

Can you taste the food going in?

Nope! Although my first formula was inexplicably vanilla flavored. Which I thought was strange. My dog thought it was tasty, though.

Do you take vitamins?

Since my formula is sort of one giant vitamin, no. Although, since I’ve cut back (for now) on how much formula I get in a day, I probably should.

Is it hard to shower/keep clean?

Since the tube goes into my gastric system (as opposed to my veins, as some people do), and the gastric system has a lot of bacteria in it by nature, my tube needs to be kept clean, not sterile. So I shower like I normally would (which is kind of abnormal, but not for tube reasons), and I just clean around the tube site with regular body soap. The only other thing I have to do is, as mentioned before, change my stoma pad regularly and apply the ointment.

Does it bother you not to eat?

I kinda covered this in earlier questions, but I’ll address this in the general “does it bother you that you can’t just grab a taco from a food truck or dig into a Ghiradelli hot fudge sundae?” sort of way that I think it’s usually intended. Yes, it does. I have a specific meal plan in mind for the day that I am miraculously cured because the Blue Fairy comes in through my window and turns me into a real 25 year old (spoiler alert: it starts with bloomin’ onion rings at the Outback). But there are a lot of things a lot of people can’t do, and it just is what it is. I don’t like it, but I accept it, and I focus on the things I can do.

Can you still have children?

No one asks me this directly, but they ask my mom this about me a lot. While I am not healthy enough to think about having a child, nor would I particularly want one if I did, and while I wouldn’t want to pass my illness (it’s genetically a 50/50 shot) onto my child, I am still physically able to have a child with my condition and my feeding tube. There is no reason a feeding tube in itself would stop a person from being able to carry a healthy child. But, lemme tell ya, that is the least of my concerns.

How long are you going to have it?

Good question. For the foreseeable future, or until something drastically changes in my health.

Can you have just one bite of ____?

Nope. And please don’t tempt me, because it does get very hard to resist, and I will pay for it.

Although, sometimes I do the very classy “chew and spit” to get a taste of something.

Does your tube ever get caught on stuff (while you’re hooked up)?

Yup. And it HURTS. But I’ve gotten better at making sure it doesn’t happen.

Why the backpack?

Because my IV pole is Stupid. That’s right, capital S. I named it Stupid because it’s so stupid. If you have carpet (like I do), it’s impossible to move the Stupid thing around (I have the bruises on my heels to prove it!). Or go between floors. Or out of the house. Or carry things because one hand has to move the pole. But it’s easier to hang the bags on Stupid than thread everything through my backpack, so when I’m in bed I use the Stupid IV pole, but if I have any intention of moving around while hooked up to my tube, I use the backpack so I can be mobile. And, since I’m technically supposed to be hooked up as many hours of the day as possible, having a good backpack to carry everything around in is very necessary and helpful! Plus, I’ve secretly always wanted to be Dora the Explorer.

Can you make your own food for the tube? Is it blenderized?

Because my formula goes into my intestine instead of my stomach, my formula is already broken down (as the stomach would do) into semi-elemental form by Nestle (that’s right, the candy company). My home care company stocks it and ships it to me monthly. So, no, I can’t just pop some chicken and potatoes into the blender and then put it through my tube. Although, with the correct precautions and recipe, someone with a g-tube (that one goes into the stomach) actually could. Bright side, my food is now covered by my insurance! So I like to tell my parents I’m actually saving money, which is why they tell me they’re putting my brother in charge of my future finances. ¯\_(ツ)_/¯

Can I see the tube?

If you’re a friend who cares about me, hell yeah! I don’t mind. I’d be curious, too! But I realize that some people can’t help what they’re squeamish about, so I don’t show my tube without warning…that is, unless I need to fix or check something in the moment, in which case my weird medical needs outweigh your potential medical squeamishness.

I will say that, if you are squeamish, please don’t ask to see the tube if it’s going to make you react badly. Because having someone visibly squirm about the thing that is semi-permanently attached to my abdomen does not feel good. I realize it’s involuntary, and by no means does it make you a bad person, but it’s just a situation best avoided.

If you’d like to see the tube right now? Well, I will deviously make you click this link so that you improve the traffic of my site in order to see it!

How did you get this? 

I have a genetic disorder, so I’ve always had this condition (as I found out last month), but I went through 21 years of my life with only mild to moderate issues from it. Things were kicked into high gear after I had a nasty case of mono and took a lot of heavy antiobiotics that weren’t really great for my body. Are those the only reasons? Would I have eventually gotten all of these other issues anyway and mono was just the straw that broke the camel’s back? Good question. Ehlers Danlos Syndrome is not a well understood condition, especially my type, so I have absolutely no idea. But hey, if you happen to get a degree in medicine, become a researcher, and find the answer, gimme a shout! Or you can donate to further research and care, but I’m not here to plug my own illness, as there are many different kinds that necessitate feeding tubes. This was all about awareness, because, as much as people want to know what actions they can take to help, oftentimes listening is the very best one. So thank you for asking, listening, and trying to understand. It really makes a big difference!

And hey, if you’re reading this because you think you might need or are planning to get a feeding tube yourself? Check out my vlog series! Which I will add to again soon. Really. I promise!

If I forgot a question or you want to add another one, just post it in comments and/or my social media. Sending y’alls spoons and love.

About the Author:

Leah is a 25 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, 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.

The post Life With A Feeding Tube: FAQs appeared first on Spoon Shares.

We’re coming to the end of Feeding Tube Awareness Week, and while I did not get to another Feeding Tube Vlog like I wanted to (I will soon, really!), I thought I’d dispel some myths about feeding tubes that I, myself, believed before I got a feeding tube a year and a half ago. I also asked some of my lovely internet people what they thought of feeding tubes, and got some really great questions! So this post will be followed by a FAQ. If you have any more questions, just post it in the comments or message me, and I’ll answer them!

But first, let’s have a tubie version of….

MYTH: A feeding tube is an illness. 

There is a belief that having a feeding tube is a condition in itself. That the very act of having it means you are sick. Don’t get me wrong, many people (including myself) who have feeding tubes are pretty darn sick, but that’s not true of all tubies. If you have a feeding tube, that does, of course, mean something about your body doesn’t work in quite the way it’s supposed to, but the feeding tube is there to fix that. It is primarily a medicine. Just like my Zofran or my Atenolol or my compression stockings, it helps keep my body as healthy and functional as possible. My feeding tube certainly causes a lot of issues and makes my life more complicated in many ways, but the reason I deal with all that is because, overall, it makes my life better. It gives me the calories I need. Just like a prosthetic limb helps an amputee, my little Birdie helps me digest food that I wouldn’t otherwise be able to. For many people, because of their feeding tube, they are now perfectly healthy.

MYTH: They’re big, weird, and scary looking. 

When I got changed with a bunch of friends before a wedding, and I warned them ahead of time the tube was “coming out” in case any of them were squeamish (as I usually do), my one friend commented how “surprisingly normal” my tube looked. And I have to agree! I know before I had a tube I had an image of a large, plastic, unbending tunnel poking out of my clothes all the time. I was wondering if I would have to cut a hole through all my clothes just to wear them. Nope! They’re tiny, flexible, and pretty nonintrusive when it comes to clothing. In fact, here’s mine!

Now, I have a “button tube” which is designed to be smaller and more discreet. Here was my original tube, which was bigger and a bit more cumbersome, but still not the giant pipeline to my stomach that I had imagined before I got a tube.

So yeah, they’re not as bizarre and unnatural looking as you probably imagine.

MYTH: If you have a feeding tube, you’re not allowed to eat.

Well, this is only half a myth because it is true for a lot of people. Many people have feeding tubes because they either can’t tolerate food at all, or because they can’t swallow food for cognitive or physiological reasons. But other people, like me, have feeding tubes for supplemental calories. I can’t eat enough food in a day to get all the calories I need without getting sick. I also can’t pump enough formula through my tube to get all the calories I need in a day without getting sick. So I get some of my calories from oral food (but in a restrictive diet), and the rest from my tube. It’s a balancing act, and it’s a tough one that I’m still struggling to perfect. But, bottom line, feeding tubes don’t always mean the end of oral food.

MYTH: They’re only used for end of life care/really old people.

Now, obviously I have a very skewed sample. But all the people I personally know with feeding tubes are in their 20s. On my “adult tubie” Facebook group, there are people of every age group: teenagers, 20s, 30s, 40s, and upwards. And a lot of the information you find online is geared towards parents who need to care for children with feeding tubes. So you get all sorts. Yes, plenty of older people need feeding tubes in their end of life care, but that’s only one portion of the Tubie population.

MYTH: Feeding tubes are a one size fits all deal.

Now I’m not referring to the fact that feeding tubes actually come in different sizes (which they do!), but as you can see from the last two myths, the manner in which a person uses their feeding tube varies widely from person to person. Not only are there two major kinds of feeding tubes in the sense that there are feeding tubes that go directly to your stomach and feeding tubes that bypass the stomach and go to your intestine, and not only are there feeding tubes that go through your nose instead of surgically through your abdomen, but people use their feeding tubes in all manner of ways, depending on their specific conditions and body’s preferences. Some people bolus their food all at once for a short period of time three times a day, like a person would with their regular meal times. Some people have to have their feeding tubes pumping formula into their bodies 24 hours a day in order to get all their calories. Some people only pump during the day or only at night. Some people never eat food, some people eat some food, and some people bypass their gastric system completely and get their nutrition through their veins (called TPN). The ways in which people approach using their feeding tubes are as varied as the reasons people use them.

MYTH: You should avoid feeding tubes at all costs because they are risky and can easily become dangerously infected.

Okay, infection is always a concern, and hence I always have hand sanitizer on me. But when it comes to the gastric system, you have to be clean, not sterile. And if you do get an infection? As long as you catch it early, a simple course of antibiotics should fix you right up. If you have TPN, which, again, goes through your veins, the risk of infection is much higher and you need to be much more careful. But for enteral feeding tubes? With some basic precautions, you should be good to go.

Stay tuned for my FAQ!

The post Six Myths and Misconceptions about Feeding Tubes appeared first on Spoon Shares.

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TRANSCRIPT BELOW THE FOLD

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.

Depending on the condition(s) you’re dealing with, you may find yourself in need of a mobility aid. This is a big step from an emotional standpoint, as it requires admitting to yourself that you need help. It may also be difficult to go out with a visible medical device. However, a lot of spoonies say that they’re glad to have their mobility device—both for what it does for them, and for how it works as a signal to others that they have special needs.

Since we’re young and not expected to end up with mobility devices, it can be hard to determine when it’s time to start using one. There isn’t a simple answer to this question. It really depends on your needs and comfort levels, and it’s an entirely personal choice; that is, if you feel like it’ll be useful to you, don’t let anyone tell you otherwise.

Canes & Crutches

It’s time to get a cane if you begin having mobility issues that are affected by balance or the ability of any part of your leg to operate correctly under you. The cane is meant to act in temporary support of a leg that occasionally does not work correctly, or add a third leg for better balance. It can also be useful if you expend a lot of energy staying upright and could use something to lean on. Check your local drugstore for walking sticks, canes, and arm crutches and see which works best for your needs!

Walkers/Rollators

If your balance becomes worse or you’re having minor trouble with both legs, you’ll find switching to a walker is the best option. The walker is only meant to be leaned on temporarily to allow your legs a moment’s rest before continuing on, and to keep you from falling over when put off-balance. Rollators, which have wheels, brakes, and seats attached, will help folks who need the occasional rest, or who can’t hold themselves up if they fall unexpectedly. These can also be found at drugstores, or specially ordered.

Wheelchairs/Powerchairs

If walking does more damage to your body than sitting in a chair, or your balance, pain, or fatigue are so intense that walking seems laughable, you should consider getting a wheelchair. Or, put differently, if you ask yourself and others, “Do I need a wheelchair?” it’s probably time to get one. People do not aspire to be in wheelchairs, so if you’re considering it, that’s a sign that it will be useful for you. You can find cheap ones to try out at thrift stores, and you can purchase a better-equipped one for longer-term use once you’re sure you need it.

* http://imzadde.tumblr.com/post/80889865128/when-is-it-time-to-upgrade

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Mobility appeared first on Spoon Shares.

See All the Vlogs!

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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.

He’s my gastric neurostimulator. He lives inside of me.

No, he does not turn me into a wifi hotspot, much to my chagrin.

But he does something much better. He helps treat the nausea and vomiting symptoms I experience as a result of my gastroparesis. This small device sends small electrical pulses that are intended to dull the nerves related to nausea.

I often see posts on social media sites from people who are considering the gastric neurostimulator and are desperately seeking advice from people who have had it implanted. Hell, I used to be one of those people.

So here is what I would like to say to each person considering the pacemaker, framed as a Q&A.

Has it helped you?

Yes. Before I had my surgery I would vomit 1-3x a day. More, if I was in a symptom flare. Now, thanks to the stim, I only vomit when I’m in a symptom flare. The difference between vomiting multiple times daily versus only a few times a month? Huge. Amazing. Miraculous. Thank you, Jarvis.

That being said, I still experience daily nausea. I have a lot of trouble eating orally and I have a feeding tube.  The stim is a symptom management tool — for me, one of my most important ones. Unfortunately, though, it’s not a cure.

Does the stim help in all cases?

No. It varies from person to person in how drastically it improves symptoms, if it improves symptoms at all, which is not a guarantee. The device is relatively new and is still being studied.

I will say, personally, that I know about eight people who have had the stimulator. Seven have seen improvement and one had it removed because it wasn’t helping,

I feel it is important to remember that while the stim does involve major surgery, it is still a completely reversible procedure.

Is it a pacemaker or a neurostimulator? I’m so confused! 

It is technically not a pacemaker as it does not “pace” the stomach the way a cardiac pacemaker paces the heart, although it is often referred to as a pacemaker. So if you see a person online referring to their “gastric pacemaker,” they’re talking about the stim!

They did, at one point, try an actual pacemaker with stomachs and, unfortunately, it has not worked. However, the neurostimulator is often referred to as a pacemaker, and if you have to tell a security officer why you can’t go through the metal detector, just tell them you have a “pacemaker” for convenience. It amounts to the same thing for them.

What maintenance is involved? 

My daily life isn’t impacted by the stim, except for the symptom relief! The stim doesn’t require daily care, but it can be adjusted every three to six months, depending on what your physician feels is needed. There are many different settings (you can change the rate and intensity of the electrical pulses), and there are absolutely no studies determining which is the ideal setting for any given person. So it’s a lot of trial and error, figuring out which setting works best for you. The right setting can improve symptoms, the wrong setting can make symptoms worse.

There are also certain medical tests you can no longer do once you have the stim, most notably the MRI. You can still have X-Rays, CT scans, etc. There are a few tests you’d need the stim turned off for, and if you have a surgical procedure, you’ll also need the stim turned off as well. This can be a serious pain in terms of making sure you have an Enterra (the company that makes the stim) representative present when you most need it, but I’ll elaborate on that more in a future post. Fun story: it involves the company threatening to arrest my mom. But back to logistics.

I do have to be careful around electric devices. For instance, I always put my phone in my left pocket, away from my battery. It’s a slim chance that this could cause my stim to turn off, but the manual told me to keep all electric devices three inches away from the battery, so I try and obey it. But I’m pretty sure it would take something much more powerful to affect the battery.

If you get the stim, you’ll also receive a manual detailing all the cans and can’ts of having the stim. There’s also one online.

I do also occasionally set off metal detectors at stores…that’s always fun to explain. “Move along, it’s just my cyborg parts.”

With the stim, you are not allowed to go through metal detectors. I haven’t had any problems with this. You just tell the security guard that you have a pacemaker and they usually let you right through. Sometimes they’ll do a quick pat down. If, for whatever reason, they need proof, Medtronic supplies you with a card detailing the information of your pacemaker and the number to call if the security guard has any questions.

I call it my “License to be Groped.”

Airports can be a little more complicated. You can’t go through the metal detectors, and if they don’t have one of the newer, non magnetic scanners, then you’ll need to get a pat down. This usually isn’t too much of a problem, albeit a bit of a nuisance, except there have been a few incidents online of people missing their flight because TSA couldn’t get an agent of the same gender to perform the pat down. It didn’t matter that the person was willing to have a pat down by a member of the opposite gender; the TSA’s policy doesn’t allow that.  So if you aren’t sure that the airports you’re traveling through have the new scanners, then you should allow extra time before your flight, just in case.  Or, if you’re a frequent flyer, consider getting a TSA pre-check. It will save you a lot of hassle in the long run.

How was the surgery?

I mean, it was major surgery. So not that fun. But not as bad as a lot of other reasons you could be in the hospital.

I was in the hospital for three days, which is usually the minimum stay for this procedure. I was on Dilaudid for the majority of the hospital stay, which is always fun…

I was switched to Percocet when I returned home. The catch with these drugs is that they slow the GI system (big problem for someone who has need of a gastric neurostimulator), so if your stomach doesn’t tolerate pain killers, then you might have a harder time with pain management. However, I had my surgery done via laparotomy (open surgery). Many surgeons now do the implant laparoscopically, which involves a lot less pain afterwards.

The intense part of the surgical pain lasted for about a week and a half.  I couldn’t even shower when I first got home. After that it dulled significantly, but I was still a little sore for a couple of weeks. You’ll be told to avoid physical activity (including heavy lifting) for 6 weeks, so that the battery pack can settle in completely.

Have you experienced any complications?

I haven’t experienced any serious problems, although I do know someone who had an infection. It was cleared up with antibiotics.

I have experienced painful muscle spasms caused by electrical arching from the stim (or, at least, that’s the theory), but it is managed by occasional acupuncture. I also regularly carry tramadol, in case it decides to randomly act up. I rarely need it, but it is a serious problem when it happens. From what I’ve gathered online, I am not the only one who experiences this problem, but it’s not an altogether common reaction.

But I’ll blog more on that topic another time.

What physicians did you use?

I used Dr. Henry Parkman at Temple University, who’s considered one of the most authoritative physicians on gastroparesis in the country.

I consider him one of the most incompetent eggheads in the country.

Seriously, I have no qualms stating this publicly on the internet. This man isn’t just rude and uncaring — I could deal with that. He is actually incompetent, unhelpful, and potentially harmful to your health. I’d list the reasons why, but this post is already bordering on novel length.

I’ll just leave you with this story. My father’s friend went to him in search of the stim, and during the 10 minute appointment, Parkman fell asleep and farted twice.

I think that pretty much accurately summarizes any encounter you could have with this man. If you can walk away with one recommendation from this post, it would be to not use him as your physician.

Luckily, the surgeon I used (who I did like), Dr. Sean Harbison, is no longer at Temple. He’s now at University of Pennsylvania Hospital, and is one of the surgeons who helped developed the stim (along with Parkman, in I assume his more lucid days). He’s a skilled surgeon and did an excellent job on my stim, but he is one of those doctors who will tell you everything you want to hear in the office and then completely ignore you once you walk out the door.

For stim adjustments, I now actually travel to Dr. Frederick Brody at George Washington University Hospital. He’s knowledgable, receptive, and thorough. I also had wonderful experiences with his fellow, Dr. Laird. For me, it’s worth the trip just to have a reliable doctor handling my adjustments.

Can you see it? Can you feel it? 

I’m a bit thin, so it does protrude ever so slightly. But it’s barely noticeable. If I touch it, it definitely feels harder than any other part of my body. But I can’t feel any sensations from it inside of my body. If you have a stim and you can feel the electric pulses, then you need to contact a doctor right away.

Because I am small waisted, it can be uncomfortable if I am lying in a specific position, but with a simple shift or adjustment then it’s back to being ignored!

Would you do it again?

A hundred times over. Yes, it’s a pain and it’d be easier to live without it, but it gave me my life back.

If you have any more questions, you can leave a comment,  email me, or ask me on twitter or tumblr!

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, 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 My Gastric Neurostimulator appeared first on Spoon Shares.