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.

I have been totally ging-ified for several years now, because, it turns out, ginger is one of my most effective medicines.

Since I have gastroparesis, one of my biggest and most debilitating symptoms is chronic nausea. And I do many different things to try and manage it (look to a future post for that one), but my absolute favorite is ginger.

Ginger. Ginger. Ginger. And more ginger.

Now, if you’re like “Oh, I’ve tried ginger ale and it doesn’t do much.” Well, odds are, you’re drinking the average mass marketed ginger ale, like Schwepps or Gosling, which means you’re actually not getting real ginger ale. You’re getting carbonated sugar water with artificial ginger taste. And sometimes carbonated sugar water can help, because of the bubbles, but you’re not getting the benefit of ginger.

Ginger is kind of a miracle plant. It has a lot of healing properties and, most importantly for spoonies with nausea, it aids digestion and soothes the stomach. So when you’re looking for something to really help your tummy aches, you want some real, honest-to-goodness ginger. And the best part is that, unlike most medicines, there are really no bad side effects to consuming ginger.

So now the question is, how do I get this ginger into my body? Well, after many years of trying just about every ginger product available in the continental U.S., I am here to share my favorite products!

Now, just a disclaimer. Not everyone likes the taste of ginger. I hated ginger before I got sick. So I had to “ease my way” into really strong ginger products. But the brain is a miraculous thing, and as the ginger started to make my stomach feel better, my brain associated it with good things, and I began to enjoy and even crave the taste. Now, for me, the stronger the ginger taste, the better.

For me, personally, ginger doesn’t “fix” a flare, but consuming it regularly throughout the day goes a long way to managing my symptoms. When I forget to have a lot of ginger products in a day, I notice. I actually have a friend with IBS who says she can eat almost anything she wants as long as she has a cup of ginger tea every day.

Which brings me to my first favorite ginger product:

1. Ginger Tea

Now, if you’re not a fan of the ginger taste, the good news is that there a lot of ginger blends. Just go to the tea aisle at your favorite grocery store and start browsing. You can find a tea that has ginger blended with lemon, apricot, or some other delicious sounding flavor to help balance the ginger kick. Of course, you’ll have better symptom management with straight ginger tea, and my personal favorite is Harney & Sons Ginger Tea.

I add a little bit of honey to this and it’s absolutely delicious and fantastically effective. The best thing about ginger tea is that, unlike most ginger products, it doesn’t contain any sugar (except for whatever you choose to add).  Plus, it’s easy to browse the tea aisle and see what strikes your fancy. I also happen to love Yogi tea, and they have a great ginger-lemon blend that is fantastic. I drink it straight without adding any sugar, milk, or honey.

2. Ginger Soda

Depending on your body, sometimes a carbonated soda is more effective to help your nausea, bloating, or cramping. The downside of that, however, is that it comes with a lot of sugar. I can tell you my teeth have suffered the consequences of this, so if you sip throughout the day like I do, I recommend using a straw.

I have two favorite sodas. The first, Reed’s Ginger Beer, can be found at most Whole Foods or other health food stores.

This soda has 26 grams of real ginger in it, so it’s very powerful, both in taste and effect. But if that’s a little too much ginger kick for you, they also have some delicious blend sodas that have very little ginger taste. My favorites are the Raspberry Ginger Brew and the Spiced Apple Ginger Brew. They only have 17g of ginger, so they’re less effective than the straight ginger beer, but they still have a lot more ginger than, say, a Canada Dry.

Update: Reed’s now makes a “Stronger Ginger Brew” that has 39g of ginger! It’s replaced Fever Tree as my “tonic” ginger beer.

My other favorite ginger beer is a recent discovery. It can be found at Total Wine, and more recently, in the organic section at Giant Grocery Store. I call this drink “my tonic” because I have it in the morning to help jump start my stomach for the day. It’s called Fever Tree Ginger Beer, and you can also order it on Amazon, although it’s a bit pricier that way.

Unfortunately, it is very sugary tasting, so I like to also have Reed’s throughout the day (even though they both have about the same sugar content, Reed’s doesn’t taste as sweet). They literally put twice the amount of sugar into the American version of Fever Tree than they do the British version, which is sad, because when I was able to try the British version, it actually tasted much better, and was, y’know, not as terrible for your teeth and health. But it relieves my bloating significantly, so it’s worth it to me. I’m looking into trying to make my own ginger beer in the near future, where I can control the sugar to ginger ratio more to my benefit, so I will report on that as well!

Bruce Cost also makes some delicious ginger brews, but be careful not to get the zero calorie/artificially sweetened kind, as those can exacerbate symptoms, which completely reverses the point of drinking it! The pomegranate blend is particularly scrumptious. Although I’ve had a hard time finding it in stores.

Fentiman’s also makes a strong ginger beer, but I personally can’t stand the taste.

Maybe you’ll like it, though!

3. Ginger Candies

These are great to carry with you on the go and munch throughout the day to manage your nausea. My favorites are The Ginger People’s Gin Gins.

I literally order these things by the case load. I probably go through a box every two days. Again, it has a lot of sugar that isn’t ideal, but it really, really helps. I now eat the original ginger flavor because I’ve found it’s the most effective for me, but I started on the apple-ginger flavor until I got used to the ginger. They’re usually available in any health/organic section of your grocery store, so you can try the different flavors and see what works best for you. But if you, like me, find a flavor you like and use them daily, your most economical option is probably to order them in bulk off of Swanson Vitamin’s (they always have coupons) or Abe’s Market.

I also like to balance out the harder candy texture with Reed’s Ginger Candies (yup, same company as my ginger beer!).

They’re a lot softer and chewier than the harder Gin Gins, so it’s just a matter of preference. I like having the option of both, and I find them both equally effective. If you like these, I find it most cost effective to order them in bulk off of Amazon.

I’ve also recently started using Ginger Tummy Drops, which are hard candies that you suck on. Although the act of chewing helps aid digestion, these are nice to suck on during those times that eating just seems impossible. They have a lot of bite, though, so I only recommend them for the expert gingerians.

Update: I also love the ginger cuts made by Nuts.Com.

Do you have any favorite ginger products that I’ve missed? Comment below! 

About the Author:

Leah is a 24 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 Fighting Nausea with Ginger Products! appeared first on Spoon Shares.

It’s really hard to wear any sort of non-elastic pants with this issue. So I had been hard-core sweatpants-ing it everyday. Which was fine for hanging out around the house, but not so much if I wanted to go anywhere, well, normal.

Enter my hero: Jag Jeans Elastic Waist.

Once again, disclaimer. I’m not getting any endorsements from these people. I just really like them.

They look just like regular jeans, except they have a comfortable, elastic, belly bloating friendly waist band. No longer need to shop at the maternity store! They have multiple colors, styles, and you can order them off of Zappos. Free shipping, free returns, and no need to waste any spoons shopping at the store. Super spoonie friendly!

I now have two pairs of pants and one pair of shorts. It’s honestly a relief to have something that makes me look like I’m wearing normal pants without strangling my sporadically distended belly into the standard waistline.

What are your favorite bloat-friendly pants?

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 Bloating Tip: Jag Jeans! appeared first on Spoon Shares.