#TUBESDAYTEN

This article shares Chloé’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 your dietitian. All views expressed belong to Chloé, and do not necessarily reflect those of Talking Tube Feeding.

⁠How are you tube fed?

I have been fed via an NJ (nasojejunal) tube ever since I began my tube-feeding journey.

How long have you been tube fed? 

Since August 2018! All my life I had been underweight, even as a baby, but in late 2017, my overall gastrointestinal function started to rapidly deteriorate. As I’d already been underweight, any weight I then lost was putting my body under a dangerous amount of strain. By summer of 2018 (so approximately 9 months later), I’d lost 25% of my body weight and my heart was starting to show signs of struggling. I was then referred to my current hospital, a specialist nutrition centre for intestinal failure, and the decision was made to admit me and insert an NJ tube.

What do you wish people knew about tube feeding? 

It doesn’t always mean you can’t eat, and it’s not the end of the world, though it might feel it at the time. Being tube fed has enabled me to regain some stomach function as I’m not always pushing it to the absolute limit all the time.

What do you want to achieve this year? 

There are so many things! The main goal that I’m working towards this year is training for the British Paragility Championships with my dog, Cinna. We’ve been doing agility for years, but we have never competed before!

Tell us about a decision in your life that has empowered you. 

Getting a young dog called Ted and deciding to train him to be my Assistance Dog. It was the first time in my life that I took power back after becoming disabled! It marked the start of a whole new world, and an ability to deal with the trials and tribulations of life much better.

Do you have any hobbies that help boost your mental health and wellbeing? 

Yes! As I mentioned, I’m currently training for the British Paragility Championships with my dog Cinna! It’s just like regular dog agility, except I’m handling my dog from my wheelchair. Otherwise, I’m a huge fan of wrestling and F1, and every weekend I go to watch local grassroots cricket matches.

How do you celebrate the small wins in your tube feeding journey? 

You know what, I’m probably not as good as I should be in celebrating the small wins on my tube feeding journey! That’s good food for thought…if you’d pardon the pun.

Who or what has supported you most in your tube feeding journey? 

My mum! My mum is an absolute legend. She’s been there with me at my lowest, and she’s been there with me at my highest too. She’s a pro at subtly helping without it being obvious. I don’t really have a good check on when I need to be hydrating myself, or other important things, and she’s always there giving me gentle reminders.

What helps you feel connected to others in the tube feeding community? 

I am lucky enough to have made some close friends along the way in my journey - but also social media! I love it when people with feeding tubes pop up on my grid and I always learn something, whether it be a hack for how to travel with a feeding tube or a new product on the market. Often other patients are aware of developments before my local services are!

What’s one piece of advice you’d share with others who are tube fed?  

It’s about you. A feeding tube will give you energy back, your life back. There will be a lot of opinions shared with you, from your family, friends, other patients, online support groups and doctors - and while I’m certainly not saying they’re not worth listening to (they are!), I’d encourage you to prioritise how you feel within that. I remember shortly after my feeding tube was put in, my younger brother asked if I wanted to put my hood up to hide the tube when we were going for a day out. It upset me that he felt like I should hide it, as ultimately, I didn’t have an option but to have it on my face at that point. I’ve had lots of stupid comments made to me over the years, and the most important thing I’ve learnt is that I need to own it and pay no attention to everyone else. If it works for me, and it improves my health and wellbeing, that’s all that matters.

 

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!