Preparing for your first feeding tube? Or just adjusting to life with tubes? Here are some tips about some tubie essentials!
**always talk to your doctors when changing/adapting any parts of your treatment plan, my posts are strictly personal experience/personal research– I am not a medical expert, aside from my years of illness 😉
Gauze and/or Tubie pads—
Gauze and tubie pads serve the same purpose, they keep the tube site (aka the stoma) clean and dry, soaking up all excess drainage and keeping all outside gunk away! Some tubies have more drainage or granulation tissue while others hardly have any at all after the stoma heals from surgery; if you have a lot of it, continuously, gauze is often (not always) the best option. Tubie pads are much cuter and don’t require tape, making them easier on the skin. Some people use both, many people develop a preference as to which one they use, but either is a solid option for keeping your stoma clean and “happy.”
Great places for tubie pads (& great donors for newbie tubies!):
Homemade Tubie Happiness (on Facebook or Etsy)
Turkey Tots ((Facebook)
Dorky Little Etsy Store (Etsy)
You’ll use syringes every day, you have to flush during and after feeds to keep your tube from clogging and many tubies take medications through the tubes, using syringes.
You can get various sizes and types of syringes, anything from a 1-3ml syringe (not used for tubes as much as for central lines), to 10ml, 30ml, and 60ml syringes. Luer lock syringes have smaller tips that can have needles screwed into them; they work best for flushing water/feeds through and the smaller ones can push clogs through. Slip tip/luer slip syringes have longer tips that are better for medications as they allow the dissolved meds pass through easier and leave less behind.
Your home health company should provide syringes, but if they don’t have the kind you like or don’t give you enough, you can buy mass quantities for cheap prices online.
Qtips, clean wash clothes, natural soaps
Keeping the tube(s) clean and dry is SO important. Change the gauze multiple times a day and pay attention to the stoma—clean gently with a warm, wet qtip when changing the dressing and wash with a cloth & natural soaps during your showers/baths/etc.
Don’t leave excess blood or drainage on the skin, it can cause irritations, itching, or pain. Some drainage and blood is normal, though. It’s no reason to panic.
There are many types of tapes and adhesive bandages, as you go along you’ll figure out which best suits you! Your infusion/home health company should provide you with tape, but if they don’t or you don’t like what they give you, there is tape in any pharmacy or any store that has a health section.
Paper tape, transpore, or medipore tape are two of the easiest on the skin, but paper tape doesn’t last as long or stick as well and it is not water proof. It may take some trial and error, but you will figure out which works best, and if you use tubie pads you won’t need as much tape!
You should get tape from your home health/infusion company, but if not you can find it online or at the pharmacy.
Your tube site, aka your stoma, may cause you discomfort on and off even when it has healed. There are a lot of options for ways to try and minimize discomfort. You should ask your doctor before changing any part of your treatment plan, but these are some options to talk about…
–Itching? Hydrocortisone cream, Benadryl cream
–Pain? Lidocaine ointment
–Skin irritation, granulation tissue, or bile burn? Try granulotion, calmoseptine, sudocrem, or any other barrier cream your doctor recommend
All of these items can be found on Amazon, at a pharmacy, or from your doctor…
Tubie belts, button covers, and tube clips
Along with tubie pads, you can get tubie belts and button or port covers that are especially helpful for children with feeding tube. Belts and covers help keep the tubes still and in place while being used or while not being used so that kids are less likely to mess with/pull on their tubes and cause harm to their tubes or themselves
The tubie clips help keep the extra tubing from dragging or getting caught on things when you are feeding on the go. These clips work well with backpacks and/or IV poles, whatever suits you. They’re cute and simple but can save you from yanking your tube out by accidentally stepping on it or getting it caught while moving around.
All of these items can be found on Etsy, a few of the best shops to find these?
Tubie clips: Crafting for a Cure Co. (They support Newbie tubies with their sales!)
Belts: Kangarootique (Etsy)
Heating pads help with pain, nausea, bloating, and so much more. You can get electric heating pads or microwavable ones. They come in all shapes, sizes, and patterns and you can get them anywhere– amazon, walmart, any pharmacy, or etsy.
One of my favorite Etsy shops and one of Newbie Tubies largest donors: Divine Comfort Rice Pks
Tubie Awareness Gear:
Be loud & proud about being a tubie; there is no shame in having a feeding tube. There are so many cute shirts, bags, and accessories that help being a tubie be a little more glamorous. Don’t be afraid to let others know about your tube, awareness and confidence are important, and you never know who else may be out there with a tube hidden under their shirt, too?
A few places to find cute tubie apparel:
Tubie Love Gear: http://feedingtubeawareness.bigcartel.com/
Newbie Tubies: instagram @ newbietubies and/or positivelyrachel.com
Hopefully this information was helpful! For more, check out our tips list or visit my good friend, Carolanne’s blog, here for more information on tubie products!