Voices of Nourishment: Stories from Blended Tube Feeding Recipients

Blended tube feeding is a method of delivering complete and balanced nutrition directly into the stomach or small intestine through a feeding tube. It's often used when individuals are unable to eat or drink enough to meet their nutritional needs orally. This can be due to a variety of reasons, including neurological conditions, swallowing difficulties, or medical treatments.

Today we'll explore the perspective of an individual and their family who transitioned to blended tube feeding. We'll delve into their experiences, challenges, and successes, providing a glimpse into their daily lives and the impact blended tube feeding has on their overall well-being. The perspective in this post will remain anonymous and the individuals will be referred to as John and Jane.

Meet John and Jane

John is an 82 year old who has had his voice box removed due to throat cancer and strong radiation and chemotherapy in 2020, with the cancer unfortunately spreading to his lungs and oesophagus. John had a feeding tube placed to focus on him being comfortable and improve his quality of life.

Initially, John was started on commercial feeds, which is the standard practice. However, he experienced cycles of days with severe diarrhoea, requiring loperamide (medication to stop diarrhoea), followed by days of constipation, which needed osmolax and a suppository. He also experienced weight loss, reflux, low energy levels, and nausea.

There had to be another alternative?

Johns wife Jane with her background in health, new there would be better options available, and begun researching into the possibility of blended tube feeding.

Unfortunately, Jane and John did not feel supported by their multi-disciplinary team with this option. Many health professionals unfortunately are still stuck in the conventional methods of tube feeding and may have biased views and entrenched traditional practices, leading to a lack of awareness or understanding of the benefits of blended tube feeding.

"I don’t feel supported by the health professionals in his team in giving a blended diet, I feel like the only option given to us is formula. I gave up talking about it because it was clear it wouldn’t be supported. I decided that if he was eating by mouth I could cook and give him what he wants, so why not be able to do the same thing just because it needs to be blended."

Starting off small, Jane begun blending meals at home, using an app to keep track of his intake.

The benefits

Almost immediately, John and Jane seen the benefits of blended tube feeding.

"I see the main benefits of blended tube feeds to be the ability to provide real, wholesome food to my husband, not a formula that although balanced is a processed product. A variety of foods can be given, I can add in foods he likes, add in foods that are more nutrient dense, and I can easily leave out things that don’t agree with him. It makes it fully customisable."

John and Jane explained many benefits of blended tube feeding, including:

• Improved bowel motions

• No nausea

• Weight gain

• More energy

• No more distress around tube feeding

• Looks forward to seeing what is being cooked through the week

The challenges

While blended tube feeding can be a beneficial option for many, it's important to acknowledge that there are challenges associated with it.

"There are some challenges and difficulties with blended tube feeds though. It does require a bit of time and effort to calculate the daily kj protein and carbs (the 3 areas I focus on). I do cook a few days at a time, then blend daily to help with this. It was harder at first but doesn’t take too long now."

"The other challenge I face is getting the consistency right, I do need to make sure the blends are thin enough which can be difficult when he can’t tolerate huge volumes"

However, Jane and John both acknowledge that the benefits of blended tube feeding out way the challenges.

"The benefits physically and psychologically make the challenges 100% worth it."

Insights from Jane and John: What They Want You to Know About Blended Tube Feeding

Blended tube feeding can be a game-changer for individuals needing specialized nutrition, but it's often not presented as a mainstream option. Jane and John, who have firsthand experience with blended tube feeding, share their insights on what they wish others knew about this approach.

"I would love for blended tube feeding to be more mainstream and actually presented as an option with support to do so."

Jane emphasised the need for more simple and straightforward information, as well as accessible information on food safety.

"If I had been given a few blend recipes that told me exactly what to include, exactly what quantity, and I knew it would be the right consistency and nutrition, it would have made it much easier at the beginning to get started on blending while I built my confidence around what to cook and how to blend effectively."

In response to these challenges, Jane and John advocate for more support and resources for blended tube feeding, including basic blend recipes and accessible information on food safety. Their experiences highlight the importance of making blended tube feeding a more mainstream option, with the necessary support and information readily available for those who need it.

Empowering Change: The Future of Blended Tube Feeding

The insights shared by Jane and John shed light on the need for greater awareness and support for blended tube feeding. By making this approach more mainstream and providing accessible information and resources, we can empower individuals and their families to navigate blended tube feeding with confidence and ease. It's time to ensure that everyone has access to the information and support they need to make informed decisions about their nutrition and well-being.

#blendedtubefeeding #nutritionsupport #empoweringchoices #choiceandcontrol #blendedfeeds #tubie #tubefeedingjourney #supportingpatients #patientcare #healthcareadvocacy

We would like to extend our heartfelt gratitude to Jane and John for generously sharing their experiences and perspectives on blended tube feeding. Your insights have been invaluable in helping us understand the challenges and opportunities associated with this approach. Thank you for your openness and willingness to contribute to Access Ability's mission of providing compassionate and effective care.