What is living with a feeding tube like?
If you are living with a condition that affects your ability to eat and/or drink, your healthcare professional might recommend a feeding tube as a solution to support your nutritional needs. Many Australians rely on a feeding tube at mealtimes - for some, it is a temporary solution while for others, living with a feeding tube is a long term prospect.
Regardless of the medical reason behind it, tube feeding can be a life saving solution. But at the same time, it can also be a life altering event. If you are new to tube feeding you may be wondering what your life will look like now. Perhaps you might be concerned about its impact on your quality of life and ability to enjoy your hobbies, for example. In this article, we will explore what you can expect from living with a feeding tube and how the tube might change your diet, social life or holiday plans.
What is living with a feeding tube like?
Even though you might not eat in the same way as before, with some adjustments, you can still enjoy most of the activities you always have.
Hireup writer, freelance journalist, and book author Melanie Dimmitt uses tube feeding for her son, Arlo. She’s also launched The Blend, an annual lifestyle magazine designed to inform and inspire the tube-feeding community. She advises that “If you can, don't hide [tube feeding]. As much as it sucks to have to bring all the kit I think it's worth it. We take ours with us to the pub and while we eat lunch, Arlo will eat his lunch. I think it's really important, so you can actually do the same thing.”'
Diet
How you eat will likely be one of the biggest changes you will go through. Depending on your personal circumstances, such as your weight or activity levels, you may need a tailored feed that is high energy or high protein, for example. Subject to your preferences, your meals can be either a ready-made formula available in-store or you may choose to make your own at home just like you did before if your doctor gives you a go ahead.
“When we have a birthday cake, I'll blend up a piece for Arlo and he will have it with us,” Melanie says. “Food is about that right? It's about sharing an experience. They can still be involved in these amazing bonding scenarios that we have through food.”
Eating out
Adjusting to meal times with others, either in or out, will depend on what you feel comfortable with. When going out for food, you may bring your meal with you, or you may prefer to ask the staff to blend your dish for you. And as for using the tube, if you don’t feel comfortable using it in public, that’s OK. You can always ask the manager whether there is a more private place you could go to have your meal.
Staying physically active
You can still keep physically active with the tube. In fact, staying fit can do wonders for your physical and emotional well being. You can enjoy a range of activities from running to swimming, but it is recommended to consult your doctor before doing any exercise that requires engaging your abdomen muscles.
Intimacy
Your tube does not prevent you from being in a relationship or being intimate with someone. If you feel cautious or uncomfortable with your tube be sure to communicate how you feel openly with your partner and progress at a pace you feel comfortable with.
Holidays
With some careful planning, you can still jet off on your dream holiday either at home or overseas. Your healthcare team can help by providing ideas and advice on how you can manage tube feeding while you're away and support you with all the relevant documents to obtain adequate travel insurance for your trip.
Caring for the tube
One thing that you will have to start doing every day is spending some caring for yourself and your tube. Make sure to always wash the tube with water before and after use to prevent clogs. It is also important to keep an eye out for infection at the incision site on your stomach - look for any signs of redness, swelling or irritation. Lastly, make sure to always keep this area clean and dry.
“Also always have spares!” Melanie says. “We have a spare tube and syringe in the glove box of our cars. Always be prepared, just in case you’re left stranded. We make sure we have spare kit, so we stock up on syringes and extension sets just to make sure that Arlo's never without.”
If you need support with tube feeding, Hireup can connect you with a support worker that can assist you. You can find out more on our website, send us an email at hello@hireup.com.au or call us at (02) 9113 5933.