New to the world of feeding tubes? Here are our favorite resources to get you going:
understanding the types
Before needing a feeding tube, you may not have known that there are several different types! Each one is used for different purposes. To understand the different names, here’s what you need to know:
The first part of your tube’s name refers to where the tube enters your body. Naso means it enters through the nose, oro means it enters through the mouth, and percutaneous means through the skin. Percutaneous endoscopic tubes require surgery to put a hole through the skin in the abdomen, and are placed using an endoscopy, or a camera inserted through a tube in the esophagus. Naso and oro tubes do not require surgery.
The second part of the name refers to where the tube empties into – gastro into the stomach, jejuno into the small intestine, and gastro-jejunal into both.
Since these names can be a mouthful, most people go by their acronyms, such as G-Tubes and J-Tubes, PEG or NG, PEG-J, etc.
support, advocacy, and information
Support for any chronic condition or medical device is crucial for your wellbeing! It’s important to nurture the relationships you already have in place and communicate well so that those in your life understand your condition and can be supportive. Letting them know, for example, how you feel about them eating around you and how your feeds work can help relieve tension during social visits. It is also helpful, though, to find a community of others who already understand. Tubie support groups can be great for making friends who don’t require food to socialize, can empathize when things feel tough, and have plenty of tips to make your experience easier! You can find groups on facebook and other forums by searching for what you are hoping for, such as this group for adults with feeding tubes.
Tubie tip: pay attention to whether groups are private, monitored by admins, and have group rules that you jive with. You want a group that is respectful of privacy, helpful, supportive, and positive.
Advocacy organizations, such as the Oley Foundation and Feeding Tube Awareness Foundation, can help you find online and in-person support groups, and are chock-full of other resources such as patient information, ways to advocate and further research, and tried-and-true solutions to challenges you may encounter. Kate Farms also offers patient advocates for free! These can support you in talking to medical providers, home health caregivers, medical suppliers, and insurance providers.
Because so many people live with feeding tubes, helpful products are plentiful! The critical ones are feeds, pump, and bag. Don’t be afraid to try out different types of feeds to figure out what your body best tolerates. You can call the hospital ahead of time to find out what they have available, and some companies (like Kate Farms here) can send you free samples. Your hospital will supply you with a pump, but if it doesn’t work for you (too heavy, for example), don’t be afraid to ask for other options. Perhaps the most important piece of equipment is your bag – a good feed bag can hold all your supplies, keep things contained and organized, and allow you the freedom to get nutrition on the go. Finding one that isn’t too bulky and fits your style will also help you feel your best self!
Tubie tip: If you are thinking of something that would make your tube life better, probably someone else has already created it! Sites like Etsy and Pinterest have tons of DIY ideas and patient-made products available for feeding tubes.
For our full list of products (and where to find them), check out our gear guide here.
Feeding tubes can be lifesavers, but they can also come with their own complications. Tubes can get clogged, pulled or dislodged, irritated, and infected. To avoid these complications, it is important to keep your tube secure and the stoma (for percutaneous tubes) clean and dry. Use clips and belts to keep everything in place. Wash your hands before touching, wash the stoma, and keep it dry and open to the air. The Feeding Tube Awareness Foundation has a wonderful “troubleshooting” section (here) for these and other complications that may come up.
Finally, it’s important to nurture your sense of self and find self-compassion! Feeding tubes alter how we look, how we eat, and how we interact with others. But over time these changes should be positive – restoring the health, strength, and confidence you need to live your life to its fullest. In the meantime, be kind to yourself as your body adjusts. This could mean practicing a gratitude journal – writing down a few things each day that you are grateful for. This also means still socializing and getting out of the house (check out on-the-go tips here). Wearing clothes that feel like you, in addition to being practical, can help. Zip-up or swing-style shirts are a good option here, and some clothing companies now offer tube-friendly clothes (and even Halloween costumes)! Find ways to shift how you view your scars and the parts of your tube that are visible. Cute products can help, as well as following people on social media who are proud of their tubes. And, as always, surround yourself with people (loved ones and support groups) who will show enough love to remind you to love yourself!