#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 Rose – Rose is 21 years old and has been tube fed for nearly 5 years. Rose is fed via a Jejunostomy tube.
Rose is here to tell us about her experience with tube feeding and how it doesn’t stop her from doing the things she loves such as swimming, clubbing and taking long walks.
This article shares Rose’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 Rose, and do not necessarily reflect those of Talking Tube Feeding.
How are you tube fed?
After having an NJ tube, my surgeons then moved me to a Jejunostomy tube, which I now use for fluids and medication, and up until recently for feed too! Currently, I also have a central line (PICC), via which I receive TPN for 12 hours overnight... this makes sure I have all my nutritional needs met and allows me to wake up with lots of energy!
How long have you been tube fed?
I have been tube fed for nearly 5 years! I cannot believe how quickly the time has flown by!
What do you wish people knew about tube feeding?
Tube feeding not only saves lives but allows people to thrive. I can still swim in the sea, work and go clubbing with my tube... In fact, my tube is the sole reason I am well enough to do those things.
What do you want to achieve this year?
I would love to have travelled to and explored new places. I hope to continue to strengthen the relationships I have with all the precious people in my life. Ensuring that they too, understand how loved and valued they are. Watching more live music is also top of my list… being able to dance enthusiastically and sing out of tune until the end of the night! Finally, progressing in my apprenticeship after lots of hard work!
Tell us about a decision in your life that has empowered you.
Starting my apprenticeship in Early Years, which is a nursery course whereby I work with babies and children whilst studying to become a qualified practitioner, truly made me appreciate how far I have come, and how grateful I am to myself and family for pushing through the hard times and coming out the other end. Working with babies and young children has brought immense joy to my life. I love having the opportunity to support, teach and watch the pure curiosity and excitement of life that they experience.
Do you have any hobbies that help boost your mental health and wellbeing?
I absolutely love both ballet and yoga. They boost my mood and bring a massive smile to my face. Family walks are also a favourite of mine... enjoying the scenery, being outside, and catching up with those that I love is a winning combination!
How do you celebrate the small wins in your tube feeding journey?
I usually celebrate the small wins by excitedly sharing these successes with my family. No matter the scale of the win, (it could be managing to prepare the following days meds in advance, to having my jejunostomy tube replaced at the hospital), mum and I will always come together and do something nice, such as:
- Walking along the stunning canal in our city… chatting away!
- Baking a tasty treat… any kind of cake is my favourite!
- Watching our favourite TV shows!
- Getting a lovely takeaway coffee!
Who or what has supported you most in your tube feeding journey?
My beautiful mum immediately comes to mind. Prior to receiving my first feeding tube, mum gently supported me through the intense anxiety I was experiencing. I squeezed her hand every time I had an NJ-tube placement. Mum has also spent years working from my bedside in the hospital, whilst continually telling me, “there’s no where I would rather be, than by your side.”. She has even bought big balloons to celebrate various health milestones, like the anniversary of my jejunostomy surgery.
What helps you feel connected to others in the tube feeding community?
Before starting social media, I had never been able to speak to anyone who had been/were going through similar experiences to mine. Through social media, I was able to have meaningful conversations with so many people in our community and have also enjoyed following the journeys of others on Talking Tube Feeding!
What’s one piece of advice you’d share with others who are tube fed?
Remember.. Your feeding tube is your SUPER POWER! Use the power it gives you to fuel a life which brings you joy. Happiness is the greatest gift we have in life. Additionally, always be proud of every single thing that makes you… YOU!
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!
