#TUBESDAYTEN
This article is part of a new website series on Talking Tube Feeding, where we hear directly from people with lived experience - whether they are tube-fed themselves or care for someone who is. Through our TUBESDAYTEN series, we aim to empower and connect the tube feeding community by sharing real stories, starting honest conversations, and helping people feel supported, and informed.
Meet Katie – Katie is 21 years old and has been tube fed since August 2024. Katie is fed via NJ.
Katie is here to tell us about her experience with tube feeding, her personal passions that have since turned into a small business, and how being tube fed has helped her achieve small milestones.
This article shares Katie’s experience of tube feeding under their individual care plan given by a healthcare professional. Please don’t change a care plan without speaking to a dietitian. All views expressed belong to Katie, and do not necessarily reflect those of Talking Tube Feeding.
How are you tube fed?
I have an NJ (naso-jejunal) feeding tube. This goes in through my nose, down my throat, through my stomach and the end is in my jejunum (part of the small intestine). This means that anything which goes through the tube bypasses my stomach completely. As I currently can’t eat or drink anything orally, I have all nutrition, hydration and medication through my feeding tube.
How long have you been tube fed?
I got my first NJ tube in August 2024 and have been completely tube-fed ever since.
What do you wish people knew about tube feeding?
It really isn’t my worst-case scenario – yes, I would rather be eating, but I would prefer this to how ill I was before I had my tube fitted.
What do you want to achieve this year?
Tube feeding has improved my health to the point where I can set goals that, while they might seem small to others, feel enormous to me after being bedbound for five years. For example, I’m planning my first trip away in over five years. It will be in the UK, but I hope to travel abroad next year.
Tell us about a decision in your life that has empowered you.
To accept the need for care and embrace and shape what that care looks like into a way that truly enables me to do as much as possible and live my life as best as I can.
Do you have any hobbies that help boost your mental health and wellbeing?
Over my years of being ill, I tried many different crafts which I have enjoyed, I then turned one of those crafts into a small business. I make and sell handmade greeting cards, which I find really fulfilling.
How do you celebrate the small wins in your tube feeding journey?
The biggest win in my tube feeding journey is the support it has given me to my health. I celebrate by being able to do some things I haven’t been able to for years, like get out of the house, and when I do those things, I completely recognise and acknowledge how much being tube fed has helped me do that.
Who or what has supported you most in your tube feeding journey?
My family have been incredibly supportive, and I have also had a lot of support from the nutrition nurses at my local hospital, from friends in the chronic illness and tube feeding community.
What helps you feel connected to others in the tube feeding community?
Being able to share useful tips and advice with other members of the community through social media and recommending products and leaning on each other for general support!
What’s one piece of advice you’d share with others who are tube fed?
When you are first tube fed, it’s easy to feel ashamed and different; however, reaching out to people can help with this so you know you aren’t alone.
If you have any questions or want to know more about tube feeding in general, drop us a message on Instagram @talkingtubefeeding or email us at talkingtubefeeding@uk.nestle.com, we’d love to hear from you!
