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*

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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

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.

The Reality of Gastroparesis: The Five Stages of Grief

Gastroparesis is a cruel illness. It greedily takes and takes and takes and leaves you with heartache and an empty stomach. Once you think you have a good grip on the reigns, it shakes you right off as a reminder of who’s boss. Over the past four and a half years with gastroparesis, I’ve lost my ability to eat food all together many times. Sometimes I can eat a handful of “safe” foods, sometimes I can only tolerate Ensure, and at my worst I was fed via a feeding tube in my intestines.

Scars and Stretch Marks

Everyone wants to feel beautiful. Society places such an astronomically high value on being aesthetically pleasing to the eye that sometimes we forget what beauty truly is. It took me years to figure out the whole self-love thing and even as I encouraged others to love their bodies, I wasn’t practicing what I was preaching. I could see the beauty in everyone but myself. Becoming chronically ill at the age of 21 added another layer of complication and confusion to the mix.