If you or someone you love requires home tube feeding, it’s important to understand how it can affect your overall quality of life. While the primary goal is to ensure you receive adequate nutrition, there are many factors that can influence your wellbeing beyond your physical health.
Here are some ways you can make your feeding tube work for / around YOU and maximise your quality of life:
1) Choosing the right feeding method can make a big difference in how you feel. Whether you require continuous feeding or prefer bolus feeding, it’s important to find a schedule that works for you and fits into your daily routine.
2) Choosing the right feeding tube. Different types of feeding tubes may be more comfortable or discreet, depending on your needs and lifestyle. A low profile button gastrostomy is much more discreet than a “dangler” tube. Or maybe a dangler works for you because then you won’t have to carry around an extra piece of equipment (i.e. extension) tubes wherever you go.
3) Finding a formula that meets your nutritional needs and preferences can help minimise discomfort and gastrointestinal symptoms. This includes homemade blended tube feeding formulas. Or perhaps you want to do a combination of commericial formula during the week and then homemade stuff on the weekend with family and friends?!
4) Find the right dietitian. Are yourself – is my dietitian an enabler or an obstructor towards my quality of life? It’s essential to feel safe and supported by your dietitian when receiving home tube feeding. If you don’t feel comfortable or confident to ask questions and suggest changes to your feeding regimen, look elsewhere! Finding a dietitian that understands your needs and priorities can make a significant difference in your quality of life. Look for a dietitian who is willing try different things to make your tube feeding work for YOU (shameless plug for us here at Tube Dietitian ;)).
5) Check out these awesome national and international business created by tubies or their carers FOR tubies to make life fun with a home feeding tube:
6) Find home tube feeding support groups or advocacy organisations that can provide additional resources and guidance. Check out these brilliant ones built and run by people with tube feeding lived experience Aussie Tubie Mates, ausEE and Oley Foundation.
7) Home tube feeding can also affect your psychological and social wellbeing. It’s not uncommon to experience anxiety, depression, or feelings of isolation due to the need for constant monitoring and the inability to eat orally. If you’re a caregiver, you may also feel overwhelmed and stressed. Don’t hesitate to seek emotional support and counseling to address any concerns and improve your overall quality of life. Organisations such as Beyond Blue, Friendline, and Lifeline are great for this.
Remember that you have the right to ask questions, voice concerns, and be involved in all decisions about your home tube feeding. Don’t hesitate to speak up if something doesn’t feel right or if you need additional support.
With the right team and resources, home tube feeding can be a safe and effective way to maintain your health and wellbeing, and live a “normal” life (whatever normal means these days!).
Happy reading and home tube feeding,
Tube Dietitian.