Living with a feeding tube
Living at home with a feeding tube may not be something you ever thought you would have to do.
The idea of it can be completely overwhelming and you may even feel defeated or upset about needing to rely on this method of getting your food. I’m sure you’re feeling a great number of emotions.
We are here to ease your fears and make you feel confident with tube feeding at home, I’m so glad you found us!
Hi! I’m Jen a registered dietitian from Canada, and I’m honored to be a guest to Australian home care dietitian, Lina Breik at Tube Dietitian.
As dietitians involved in tube feeding at home, we want to support your tube feeding journey and set you up for success. Having a trusted, supportive dietitian by your side will help you thrive along your tube feeding journey.
But you are at the center of your care team.
You will guide all decisions about what, when, and how you want your feeding plan to work for you or your caregivers. Being informed will help you feel empowered on your tube feeding journey.
With the right knowledge, support, and preparation, you can navigate this journey with confidence and peace of mind. Let’s get into it!
Understanding tube feeding
Tube feeding is often something people only learn about when they or someone they love needs one. It’s normal to feel overwhelmed because this is completely new to you.
It’s just another way to get your nutrition, and as tube feeding dietitians, we are trying to help normalize living at home with a feeding tube.
Tube feeding may be needed if you can’t consume adequate nutrition orally (through your mouth).
It involves delivering food and liquids directly to your digestive tract through a tube. A feeding tube can be inserted in your nose, mouth, or abdomen depending on your needs and reasons for the feeding tube.
This could be due to various medical conditions or situations and can be short-term or long-term. Yes, you can survive and even thrive on tube feeding long-term!
Lina wrote another blog article here, which tackles the different types of feeding tubes with some interesting videos on insertion. Start here to get a sense of feeding tube options.
Understanding the options for feeding tubes will help guide your discussions with your healthcare team and find the right tube for you.
Benefits of tube feeding at home
Although going from the security of the hospital to living at home with a feeding tube can be scary, there are benefits to it.
If you’re getting ready to leave the hospital with a feeding tube, I’d encourage you to head to my article on the transition from hospital to home tube feeding. It will help you leave the hospital feeling confident and ready to tackle feeding at home.
Lina wrote a wonderful book called Your Tube. It is a comprehensive guide to empower you and build your confidence in tube feeding. If you are looking for a “go-to” guide for your tube feeding journey, please go check it out.
The initial days at home can be daunting, for sure, but once you get set up properly, home provides a sense of comfort and familiarity that you probably didn’t feel in the hospital.
Once you’re home you may feel more empowered to manage your schedule and routine without a healthcare provider always looking over your shoulder.
Tube feeding at home can be adjusted to meet the needs of your home life, and a home dietitian can help you work on finding what will work for you and your family or caregivers.
Lina and her team at Tube Dietitian are Australian home care dietitians who can support your tube feeding at home. Their mission is to take the fear out of tube feeding and work with you to find a tube feeding routine that works specifically for you and your needs.
There are many aspects of tube feeding at home that Lina would help you get sorted. If you are not in Australia, here are other trusted places to find a qualified dietitian to support you.
Next, let’s talk about the supplies and equipment you’ll need.
Tube feeding equipment and supplies
You must have the appropriate equipment and supplies set up for tube feeding at home.
Your equipment and supplies will depend on the method of feeding you use but could include a feeding pump, giving sets, extension sets, syringes, and your formula or food.
Lina has given you some great information here on tube feeding equipment and providers.
You will need a clean area to organize and store your supplies and equipment. You will also need to think about space for cleaning and sanitizing your supplies and equipment.
Don’t worry, you’ll get the hang of what you need and how to set up your supplies to work for you.
Your dietitian and other providers can also help you navigate how to obtain the necessary equipment and supplies and what if any, funding is available to you.
If you live in Australia, Lina has also summarized different avenues for funding your tube feeding here. If you live elsewhere, speak to your dietitian about how to obtain funding where you live.
Now, what goes through the tube?
Tube feeding formula or blended food
There are many options when it comes to choosing a formula or blended food.
Commercial synthetic formulas are common for you to get started with when you get a feeding tube. Some hospitals offer blended tube feeding (not in Australia though, yet!), but often this is more common at home.
Your dietitian will work with you to find a formula that suits your nutrition needs, medical conditions, allergies or intolerances, desired schedule, and lifestyle needs.
If you are interested in blended food, ask your dietitian about this option. Not all healthcare providers, dietitians included, are completely supportive of this. But it may just be because they don’t know enough to support you.
Blended tube feeding is something that is being researched more and is gaining acceptance.
There are more and more resources and Lina and I are certainly dietitians that support you exploring your options and helping you feed yourself in a way that aligns with your values.
Building your team for support
Having a support team around you will also set you up for success.
This includes your healthcare team (nurse, dietitian, doctor, specialists) but also your friends and family.
Know who you should contact for help if you have questions or problems arise at home.
Have a list of contacts handy and know who to call in different scenarios – like if your tube is blocked or falls out. Or you need to adjust your tube feeding schedule or have someone look at your stoma.
Seek connections in your community or the online community. There are many supportive, informative groups you can take part in – either passively or actively (depending on your level of comfort).
Just be mindful of where your information is coming from and never substitute online advice from chats or forums for personalized medical advice.
Seeking mental health and emotional support
Adjusting to tube feeding goes beyond adjusting to the physical aspects of having a feeding tube and extends into dealing with the psychological and emotional aspects of living with a feeding tube.
You are going to experience a variety of emotions or reactions to new situations in your life, and that’s normal.
You may feel relief, grief, frustration, comfort, isolation and, I’m sure so many more.
It’s okay to seek support through a variety of avenues including family, friends, other people on tube feeding, and of course more formal healthcare providers such as psychologists or psychiatrists.
Having a trusted support system and people you can confide in can make a world of difference in your tube feeding journey.
Lina wrote about the quality of life with a feeding tube here, where she addresses some of the topics we’ve discussed above – and also shares some supportive resources available for tube feeding in Australia and finding the right home care dietitian.
You can thrive with tube feeding at home
Your tube feeding journey will be unique to you and at first, this may seem daunting.
As you gain more knowledge and confidence, you will build your resilience and feel more empowered with living at home with a feeding tube.
Remember you are not alone, as isolated as you may sometimes feel.
By embracing this journey and seeking the knowledge and support when you need it, you can overcome your fears and embrace a bright, healthy future on tube feeding – and thrive!
If any of this resonates with you, please don’t hesitate to reach out to either Lina or myself to ask more questions and allow us to help you navigate the deep blue ocean of home tube feeding. If we can’t help you directly, we can also help you find someone who can.
Happy reading and home tube feeding,
