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 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.
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!
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 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!
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.
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 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.
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.
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.
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