Tips And Tricks For Tubies On-The-Go

Any tubie can tell you tube feeds require a Mary Poppins bag of supplies. From formula to pumps, it’s never as simple as pouring your feeds in the bag and being ready to go. It’s a production just to get tube feeds set up for home, but feeding on the go seems like it is in a league of its own! For awhile, I was afraid to leave the house while I was feeding. I was convinced there was no simple way to run my feeds in public. There are so many things that can go awry. But over the years, I’ve learned helpful tips and tricks to make feeding on the go super easy!

First, you’ll need to make sure you have the right supplies. Besides the obvious of setting up the formula in the feed bag and primed in the pump, here are some items that are essential for tubie life on the go:

The Essential Supplies

1. Feed Backpack
   

   Your home health company should supply you with the standard black bag to use. It’s simple, sleek, and designed specifically to keep your bag and pump safe.

   But if you want a more personalized or fun option, you can order a customized backpack! These backpacks or purses are converted especially to hold all the necessary equipment for your tube feeds. They come in all different sizes, colors, and patterns.

   If you’re looking for a good quality converted backpack, check out Taylor Hart Designs here.
   

2. Carry-All Bag
   

   You’ll need something to keep your extra supplies in.

   Feeding in public can come with all sorts of issues like your tube clogging or your stoma leaking. Be prepared for these emergency situations by having a special bag handy (bonus if it fits into your feed backpack!) stocked with all the necessary supplies.

   Personally, I recommend carrying a syringe, tube extension (if needed), and an extra tubie pad or gauze packet.

   Hand sanitizer and tissues are great to throw in the bag as well.

   You can use any zipper carry bag you have already or you can pick up one that is made specifically for tubies by a tubie here.
   

3. Port Cover
   

   Sometimes the tube and feed line connection isn’t the strongest.

   Even when I feed at night time I wear a port connection cover to make sure I’m not “feeding the bed”. This is extra important if you’re out and about!

   The port cover wraps around the opening of your tube and the connecting portion of the feed line to make sure they stay together. This will prevent spills from ruining your clothes.

   Getting a thinner and fashionable port cover is perfect for on the go.

   If you don’t already have a favorite, check out Little Len Creations here.
   

4. Tubie Clips
   

   Lastly, but certainly not least you’ll want to consider tubie clips. These tiny devices are multi purposed and I’d recommend getting two.

   One clip can be placed inside your feed backpack to keep your feed line neatly tethered in your bag so no kinks or tangles become an issue. The second clip can be placed on your clothing or on the outside of the backpack to keep your feed line close to your body to avoid getting it pulled or caught on anything.

   You can check out fun and fashionable tubie clips here.

 

Now that you have the right supplies, here are some useful tricks I’ve learned over the years:

3 Tubie Tricks Learned From Pain Experiences

1. Make sure your pump is fully charged!

   If it’s not, make sure to bring along the charger. Nothing is worse than being in the middle of a feed and having your pump die.

   Ideally, before you leave the house your pump should be charged all the way so you don’t have to be tied down next to an outlet, but if that’s not possible or you’ll be out longer than the pump’s battery lasts, bring the charger!

2. Keep a lukewarm water bottle handy in case you need to flush or unhook.

   Anywhere you go you can probably find access to water, but a clean and safe way is to insert your syringe straight into the bottle. That way you know the water temperature is okay and the container holding the water isn’t dirty. Don’t wait to flush because you don’t have water available! This is the most certain way to end up with a clogged tube and we all know how miserable that is.

3. Wear a camisole to keep your tubing tight to your body so it doesn’t move.

   I don’t know about you, but there are few things worse than granulation tissue or an irritated stoma. I always make sure to wear a cami to help secure my tube down when I know I’ll be moving a lot.

   It also keeps your feeding tube flat so that it’s less noticeable through your clothing (not that you should be ashamed of your life saving tube! I just know some people aren’t comfortable with stares and questions from strangers so this may be helpful if you’re one of those folks).

I hope these tips and tricks for a tubie on the go are useful for you. Let me know which must-have item on the list was the most helpful for you and which tips you tried! Have your own tips and tricks to add? Leave a comment below!

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Crafting For A Cure Co

As I headed home from my GJ feeding tube placement surgery this past November, I remember thinking, “wow, you’d think since I had a feeding tube a few years ago I wouldn’t feel so lost!”. But becoming a tubie is so much more than learning to adjust to the tube protruding from your abdomen. It’s figuring out how to set up feeds, learning how to clean and care for your stoma, and compiling tips and tricks from veteran tubies.

One thing I did remember was feeling better about being tube fed when I was able to make it less medical and more a part of me. My first go as a tubie was in 2014 and there wasn’t much available at the time besides tubie pads. I had a ton…one in every color and pattern. So before I even got my second surgery in 2017 to place a new stoma and tube, I ordered a set of tubie pads from an Etsy shop.

While browsing Etsy, I came across new inventions that looked super promising in helping make tubie life a lot easier. The two products that stuck out the most were port connection covers (to help prevent the tube and feed line from detaching in the middle of a feed) and tubie clips (to help prevent the feed line from getting caught and snagged, painfully pulling on the feeding tube).

I was looking for a new hobby since I’m mostly housebound and sewing always intrigued me. I figured tubie clips would be the perfect place to start! I bought myself a machine and taught myself how to sew. I initially intended on only making a few clips and port connection covers for myself, but I wanted to keep making more. I decided a perfect way for me to enjoy both my hobby and work again would be to open up a new Etsy store.

I decided to create Crafting For A Cure Co. so I could share my creations with others while also giving back. For every accessory that is a sold, a portion of the sale goes directly to the Newbie Tubies project which sends care packages to children and adults alike who are getting feeding tubes for the first time.

Right now, I currently only have tubie clips listed for sale but I can’t wait to add more including: port connection covers, tubie pads, chapstick holders, and other fun accessories designed with chronically ill warriors in mind!

Visit my store here.

 

I Had An Eating Disorder

I had an eating disorder.

Those are really words I never expected to say. Only a few people who are close to me know and many who are close to me will likely find out here and now. But I think it’s something that’s important to talk about.

Beginners Guide to HR620 And How It Impacts Disabled Individuals

You probably haven’t heard about the new proposed law, HR620. It’s barely gotten any media coverage which is frightening and disheartening, as it will disenfranchise so many Americans from their civil rights. I’ve compiled the basics of what you need to know about HR620.

Tubie Problems (With Solution Suggestions!)

Problem: granulation tissue

Granulation tissue is a pain…literally. You can wear a tubie pad or gauze to protect your stoma, you can load on the barrier cream and change your dressing often, but odds are you’ll end up with GT at some point in your journey as a tubie. Your doctor can treat it with silver nitrate sticks but that burns and requires a trip to the office or hospital.

Solution: alum + Calmoseptine mixture or GranuLotion

Alum is a pickling spice that you can mix with a little water to make a paste. Apply the paste directly to the granulation tissue with a Q-tip and be careful to avoid the healthy skin. Apply gauze over the area and let it do its magic. After 24 hours, it should darken (almost black), shrink, and fall off. Make sure to use Calmoseptine or another barrier cream to sooth the skin in the following days. Repeat steps as necessary.

If a pickling spice sounds a bit too DIY/home remedy for you, try a product like GranuLotion. It’s a topical treatment made specifically to take care of painful granulation tissue. The process is the exact same as the alum + Calmoseptine mixture and the box comes with 5 packets so you have access to multiple applications.

Problem: disconnecting on accident

Disconnecting your fed line from your tube is messy and frustrating, especially if you’re in public or it’s in the middle of the night and you don’t notice. I’m sure every tubie has heard the joke about “feeding the bed” instead of themselves. Tape can do the trick sometimes, but that’s a lot of tape and sometimes it loses its stickiness and slips out of place.

Solution: port covers

An easy solution to disconnecting and making a mess is a fashionable port cover. A port cover encases your tube ports and your line hook ups to keep them snuggly together. The fabric is also absorbent, just in case there somehow is a leak. If you’re super mobile in bed and run night feeds, this is the product for you! It’s also great for when you’re feeding in public and you’re worried about soaking your clothes on accident.

Problem: clogs

Four words every tubie dreads saying… “my tube is clogged!” What do you do when you can’t get anything through your tube? The panic you feel when nothing will budge and a trip to the hospital seems imminent, you will do basically anything to get things moving. No one wants to have a tube replacement due to a nasty clog.

Solution: warm water + sheer strength or Lopez valve

Sometimes a clog is a two-person job. Hold the port of your tube and ask someone to push about 20mls of warm water through your tube with force. I’m talking red-imprint-on-your-hand-from-the-syringe hard. This should “pop” the formula or medicine through the tube. It may hurt a bit but it’s over quickly and doesn’t do any damage to your tube or stomach. Follow up with as much water as you can tolerate to make sure the clog is all the way through. If that doesn’t work, you can request a device from your doctor called a Lopez valve. This valve is specially designed to give you more leverage when pushing down on the syringe. A lot of hospitals use these when you come in with a clog you can’t get out at home. Skip the ER or doctor’s office and get a Lopez valve of your own.

Problem: leaky stoma

Leaky stomas are no fun. Plus, they can lead to granulation tissue. The stoma needs to be kept as dry as possible. Usually doctors send you on your way with gauze pads and instruct you to change it every 12 or so hours. While gauze totally does the job to keep the stoma dry, it’s kind of boring. Why not make the experience a little prettier?

Solution: tubie pads

Tubie pads are not only practicable and reusable but they’re fun! A tubie pad is a small, usually circular, piece of fabric sown together with an absorbent backing that is cut down the middle for easy placement around the tube. This creates a soft barrier between your stoma and the plastic tubing. It can greatly help improve and prevent granulation tissue as well as protect the sensitive skin around the tube. Tubie pads come in all different sizes and can be used on an infant or an adult. There’s also every pattern of fabric you could ever dream of.

Problem: stained tubie pads

Stained tubie pads are frustrating because they’re so cute and you don’t want to ruin them with gross stoma leakage. Over washing tubie pads in the washing machine can be just as damaging as eventually the fabric will wear down.

Solution: double wash-once by hand

The best and most efficient way I’ve discovered to clean my tubie pads is to wash off the discharge right after taking off the pad. Then I either let it soak in water and a little dawn dish soap overnight or I hand wash it gently. After, it gets tossed in a lingerie bag which can be thrown in with your regular wash the next time you do it.

Problem: irritated skin around the stoma

Itchy and raw skin is normal with a feeding tube, especially if you have a long tube that dangles and pulls. A lot of people suggest using diaper rash cream around the stoma to help calm it down. While that works, there is a more effective product out there.

Solution: barrier cream

Calmoseptine is great for the skin. It provides a physical moisture barrier for injured skin. It also acts as a counter-irritant, and temporarily relieves discomfort and itching. On Calmoseptine’s list of uses, it mentions it is a protectant for feeding tube sites.

Problem: catching your feed line on something

Door knobs and the like are the bane of a tubie’s existence. There’s nothing quite as annoying as getting your feed line caught on a knob or handle. You could tape the line down to your body but that’s damaging to the skin. It’s also not exactly comfortable.

Solution: tube clip

Tube clips are small devices that hold your tube line up and closer to your body to prevent lines from becoming twisted, caught up, or snagged on things throughout your feed. It can also guide the line so it can run it along the chest and out the top of a shirt instead of underneath the shirt. Super handy and convenient.

Problem: bumping your tube/stoma

Have small kids? An energetic dog who likes to jump? Are you just plain clumsy (like me)? Sometimes it’s tricky to secure a tube closely to your body or protect a button tube and it’s really easy to bump it. A little padding could save you from painful moments of an irritated stoma.

Solution: tube belt

A tube belt will put your mind at ease as it adds padding around your abdomen and tube to make sure it’s safe when going about daily activities. I personally used a tube belt when I first got my long feeding tube because I wasn’t sure how my puppy would react to it. While she learned to leave my tube alone, the belt provided comfort that she couldn’t directly get at my tube. Tube belts have to be custom made to assure the waist size and pocket for the tube are the correct size.

 

*None of this advice is from a medical professional. Please consult your doctor before attempting any home remedies suggested. These are purely based from personal experience, not medical knowledge*

Why the KE Feeding Tube Diet is Ableist

Ableism is defined as the discrimination of disabled people.

The KE Diet has been around for years. It touts the fact that it’s medically supervised, uses no drugs, requires no surgery, and will leave you with no hunger. Sounds like a miracle, right? Instead of lifestyle and dietary changes, the KE Diet inserts a NG tube up your nose and down into your stomach. You’re fed only protein and fats over a 10 day period. This diet has been dubbed “the feeding tube diet” because that’s all it is. People are electing to get a feeding tube in a vain attempt to lose weight.

While it may seem harmless to the average person, as someone with an abdominal GJ feeding tube, the KE Diet is incredibly offensive to those who need a feeding tube to survive. A feeding tube is not a fad or a quick fix. It’s a medical device that saves the lives of millions of people each day. Feeding tubes were designed for those who cannot eat or get adequate nutrition orally, whatever the reason may be. Quite frankly, it’s a slap in the face to those of us with feeding tubes to use something we depend on to live as a means to lose weight fast. To have the ability to use a life-saving medical device as a choice and not a necessity is ableist.

But the problematic nature of the KE Diet doesn’t stop there. Did you know your doctor can’t just decide you need a feeding tube and have that be it, no questions asked? Insurance needs to deem it 100% medically necessary in order for them to cover the surgery, continual aftercare, and supplies. This includes invasive and painful tests to “prove” you need a feeding tube. As well as sometimes a change in diagnosis code, since insurances won’t cover a feeding tube for gastroparesis, but they’ll cover one for failure to thrive. It’s a painstaking process that often leaves people, who desperately need a feeding tube, quite literally starving to death.

Here’s the story of Kathy Gratton-Wilcox, who’s insurance will not cover a feeding tube because they don’t deem it “medically necessary”:

Kathy was told by home health services that her feeding tube would be covered. While she waited on her doctor’s orders for formula, she ended up having to reschedule the surgery 5 times because the doctor felt no urgency writing a single script. Once she got the tube placed, she found out nothing would be covered. Because Kathy isn’t in renal failure or unable to swallow, her insurance will not cover enteral feedings or equipment. Certain insurances only cover feeding tubes for certain diagnoses, often leaving patients with chronic illnesses off the list. While Kathy is working with her doctor to recode the reason for her tube and hopefully get her supplies covered, she currently pays $70/month for her pump rental, $6/day for her feed bags that she needs daily, $2-$8/can for her actual formula at 5 cans daily and that doesn’t include the other supplies she needs like gauze and syringes, to name a few. It also doesn’t include her medication or other her medical costs.

Kathy isn’t alone in her struggles with her feeding tube. Because of ableist fads like the KE Diet, feeding tubes are taken less seriously by medical professionals and insurances. The popularity of the KE Diet could potentially be killing those who really need a feeding tube. So before you hop on board for a quick fix, think about the impact it could be making on chronically ill and disabled folks.

What You’ll Need As A Tubie

Becoming feeding tube dependent can be so overwhelming. Being a tubie comes along with a lot more than just hooking up to feeds and making sure to flush your tube. Here are the things besides the basics that your doctor may not tell you about…

Barrier Cream

Barrier cream like Calmoseptine can drastically improve the health of the skin around your stoma. Whether it’s itchy, red, or a little sore, help sooth your stoma using the barrier cream. I find this is especially important for tubies with a long tube, as the weight of the tube can irritate the bottom of the stoma.

You can find Calmoseptine or other brands of barrier cream on Amazon.

Tubie pads

By far the most fun tubie accessory is a tubie pad! Not only are they functional, but they’re super cute too. A tubie pad is a small, usually circular, piece of fabric sown together with an absorbent backing that is cut down the middle for easy placement around the tube. This creates a soft barrier between your stoma and the plastic tubing. It can greatly help improve and prevent granulation tissue as well as protect the sensitive skin around the tube. Tubie pads come in all different sizes and can be used on an infant or an adult. There’s also every pattern of fabric you could ever dream of! Shopping for tubie pads can be addictive so browse with caution!

You can find tubie pads in Etsy shops or in Facebook groups. My personal favorites include: Homemade Tubie Happiness, Under The Willow Tree HM, Turkey Tot Customs and Little Len Creations.

Extra 60mL syringes

When ordering your home health supplies, don’t be shy to ask for extra 60mL syringes. Some companies will send you about 5 a month, but if they only want to send you one make sure to request backups. I use a syringe for 48 hours and then stick it in the dishwasher. Once the plunger part of the syringe starts to become hard to push, I toss it and get a new one. I like to keep syringes everywhere…just in case! I have one in the car, one in my feeding backpack, one in my purse, and one in the kitchen (this one is the only syringe I use daily, the rest are for emergency situations). The reason I prefer 60mL is because it gives you enough pressure to push through clogs and is also the standard mLs required to flush the tube.

You can find the syringes through home health, but if you don’t have access to extras you can order some here.

Port covers

Port covers are a must have for anyone with a little tubie but can also be very beneficial for any age tubie. The covers wrap and snap around the tube connections to securely enclose them to prevent leaking or accidental disconnection. Port covers come in a ton of fun fabrics like tubie pads and you can even get one to match your pads!

You can find port covers on Etsy. My favorite port covers are from Little Len Creations.

Adhesive remover pads

If you need to tape down any part of your tube, you’re bound to get medical tape residue stuck all over your skin. Instead of rubbing it off with a washcloth that can irritate the delicate skin, try using an adhesive remover pad. You can get these from your home health supply company by request.

You can find adhesive remover pads on Amazon.

Tube clips

Tubie clips are small devices that hold your tube line up and closer to your body to prevent lines from becoming twisted, caught up, or snagged on things throughout your feed. It can also guide the line so it can run it along the chest and out the top of a shirt instead of underneath the shirt.

You can find tubie clips in Etsy shops or Facebook groups. My favorite tubie clips can be found at Crafting For A Cure Co.

Wedge pillow

You may already have one of these special pillows if you’re prone to reflux, but if you’re feeding at nighttime you’ll want to be propped up while asleep. This is essential as you’re technically eating while laying down and we all know how terrible that is. A wedge pillow provides comfort and practicality to night feeds.

You can find wedge pillows on Amazon.

Tube belt

Sometimes it’s tricky to secure a tube closely to your body or protect a button tube. A tube belt will put your mind at ease as it adds padding around your abdomen and tube to make sure it’s safe when going about daily activities. I personally used a tube belt when I first got my long feeding tube because I wasn’t sure how my puppy would react to it. While she learned to leave my tube alone, the belt provided comfort that she couldn’t directly get at my tube. Tube belts have to be custom made to assure the waist size and pocket for the tube are the correct size.

You can find tube belts on Etsy. My favorite tube belt was made by Jean’s Sunshine Shop.

Medical tape

An easy and efficient way to adhere your tube to your body is by using medical tape. This is another item your home health company should supply. Make sure to ask for a cloth tape so it’s okay for sensitive skin.

You can find medical tape on Amazon.

Split gauze

If tubie pads just aren’t your thing or your skin is ultrasensitive, split gauze can help prevent granulation tissue and irritation around the stoma. Split gauze is a must-have while you’re recovering from surgery too. The stoma will bleed in addition to producing discharge so you’ll want something that you can throw away once it’s bloody. The hospital may supply you with gauze and you should also be able to receive it through home health. Make sure to ask for the split gauze so you don’t have to desterilize it by using scissors to cut a line down the middle.

You can find split gauze on Amazon.

Awareness and comfort items

Show your tubie pride with awareness accessories! There’s an adorable tubie heart pin from Chronically Divine and comfortable t-shirts from Fabulous by Kat. If you’re in need of adaptive clothing, you can get custom pieces from Tubie Trends. There’s so many different ways to display your tubie pride, so get creative!

 

In honor of Feeding Tube Awareness Week 2018

College With A Chronic Illness

I spent two years at the local community college and then transferred to a school I wasn’t even sure I was smart enough to get into. It became my dream college; the University of Pittsburgh. The opportunities for me to pursue my passions were endless and the city only enhanced my ability to take full advantage of everything I could possibly balance on my plate.

Stomas and Self-Love

There are many reasons why getting a permanent feeding tube is scary. There’s the obvious; like having a weird foreign object protruding from your abdomen to feed you, and there’s the fact that your body is about to forever change.

A GPer’s Guide to Surviving the Holidays When You Can’t Eat

The weeks leading up to the holidays are filled with shop ‘til you drop days, nights driving around to see light displays, and afternoons curled up on the couch watching Elf for the fifth time in a row (okay, maybe that last one is just me). But for many of us with gastroparesis, when the actual day comes we’re stuck in a weird headspace of joyful holiday cheer and painful grief. We want to enjoy the holiday, but there’s no denying it’s not the same when you can’t partake in one of the biggest parts of the season: eating.