Must Haves for Tubies (revisited)

When I first became feeding tube dependent, I was totally lost. My doctor put the tube in, wrote me a script for formula and sent me on my way. With no guidance on how to care for my tube and what I might need, I turned to other tubies. Through them I’ve learned a vast amount of knowledge about different products and tips to help make having a feeding tube easier. But now that I’ve had a feeding tube for 4 years, I’ve developed my own preferences for certain brands and I’ve figured out what I use on a daily basis versus what I don’t tend to reach for anymore. Here’s a revised list of my must-haves for tubies:

•tubie pads – Soft, absorbent, cute and unique are my criteria for a great tubie pad. I’ve tried almost every brand out there. While some check a few boxes, only a couple check them all! – try my favorite tubie pads by Turkey Tot Customs and TubieContinued.

•port covers – I didn’t begin to use port connection covers until I got a button tube and realized the connector of the feed line and the extension to my feeding tube didn’t exactly stay in place all the time. After many spills and disconnections, I now swear by them! – try my favorite port connection covers (made by me!) here. Turkey Tot Customs and TubieContinued sells awesome ones as well.

•tubie clips – I pulled my feed line too many times to count. So many times, in fact, that these clips quickly became my favorite invention! I began making them for myself and fellow tubies. I love matching these practical accessories to my tubie pads and port covers – try my favorite tubie clips (made by me!) at Crafting For A Cure Co.

•split gauze – Split gauze is super useful for the days my stoma is extra leaky or when I need to use a thick barrier cream that would stain tubie pads. – split gauze should be provided by your home health supply company but you can get more here on Amazon.

•barrier cream or powder – I prefer powders over creams because they’re less messy and pair with a tubie pad but sometimes a cream is needed to help irritated skin around the stoma. – try a few of my favorites: Stomahesive, Aquaphor and Calmoseptine.

•no rinse stoma cleaning spray- This product is truly a game changer. I used to clean my stoma with bar soap and warm water twice a day in the bathroom but now I can clean it anywhere with a piece of split gauze and this spray. It cleanses and also takes away odor. – try my favorite stoma cleanser here.

•medipore tape – Tape can be so harsh on the skin. The best tape I’ve found is medipore tape. You don’t even need scissors to cut it. It’s perforated, holds well, and removes gently. – medipore tape should be available from your home health supply company but you can get more here.

•wedge pillow or incline bed – I now sleep in an adjustable bed but before that, I used a wedge pillow for years. I still use that same wedge pillow for travel. The wedge pillow is great for feeding at night. – try my favorite wedge pillow here.

•feeding backpack – I personally don’t mind the plain black backpack given to me by home health, but you could always DIY a backpack or buy a converted one online. Using a feed bag allows you to feed on the go and also be more mobile in your own home. – a feed backpack should be provided to you through your home health supply company but you can get a fun one at Taylor Hart Designs.

•extra syringes (if you take a lot of meds via tube) – If you’re like me and take dozens of pills a day, the small allotment of syringes that home health gives you isn’t enough to get you through the month. I dissolve my pills right in the syringe and put the cap back on until it’s time to take the medication. – 60mL syringes should be provided by your home health supply company but you can get more here.

•tegaderm – If your tube is extra leaky and gets your clothes wet or if you’re worried about keeping your stoma dry in stagnant water, Tegaderm is a dressing that keeps leakage in and water out. It’s a great solution for both problems. – try tegaderm waterproof dressing here.

•emergency kit (extra button if available/for straight G or J tubes, syringe, gauze, extension, tape, extra tubie pad, hand sanitizer in a medical bag) – I take an emergency bag with all the extra supplies I may need anywhere I go. You never know when you may need something regarding your tube. Being unprepared is the worst. – try my favorite bag for emergency supplies on the go here.

•granulotion – Going to the doctor to get your granulation tissue burnt off with silver nitrate is inconvenient and painful. A lot of people use a mixture of alum spice and barrier cream to get it to go away at home. Granulotion is a product made specifically for getting rid of granulation tissue in a gentle manner. It’s a great product and a little goes a long way. – try my favorite solution to granulation tissue here.

•cream or powder for yeast infections – Yeast infections can happen around the stoma site. I always keep a powder for athlete’s foot on hand to help with that. It usually clears it up in a few days and I avoid a trip to the doctor and a costly prescription. (Please consult your doctor before trying this) – try my favorite OTC powder used for athlete’s foot here.

•hand sanitizer – Before I do anything regarding my tube, I always sanitize my hands. Hand sanitizer is also helpful for on the go cleaning. – try my favorite rinse free hand cleanser here.

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