Bella's Story
My feeding tube journey began back in 2020. When COVID hit I started having moderate-severe gastrointestinal and bowel issues. I was constantly fighting with doctors to get them to believe me but was always dismissed as being anxious or on my period. I was a university student living across the country from my family and my health was rapidly declining.
In late 2021 I finally found a doctor who would listen and I was referred for a gastric-emptying study which then led to a Gastroparesis diagnosis. After multiple failed medication trials and back-to-back emergency room visits, a decision was made to admit me and trial an NG tube in September 2022. The tube lasted all of 6 hours before it had to be removed.
The next day an NJ tube was placed which remained in situ for another 4 months. Going to university and living in student accommodation with a silicone tube taped to my face took quite a physical and mental toll.
In December of 2022 I finally had a PEG-J placed as we realised, I was going to need long-term treatment.
It’s difficult living with a medical device that has left me with unending trauma and simultaneously keeps me alive. It’s difficult to live with, but without it I wouldn’t be working, studying or advocating for people like me. The strange looks I get walking around with tubing hanging out of my clothes or ‘drinking’ by attaching a syringe to a tube in my abdomen can make me extremely self-conscious but I have no other choice.
My tube makes life hard, but it gives me a chance. I’ve got a long and difficult journey still ahead of me but I’ll get through it with my support system.
Story contributed by Bella; January 2025
Kaitlin's Story
My name is Kaitlin, and I’m 30 years old. This is a brief overview of my journey, with some important “tubie” facts along the way.
Like most of us living with a feeding tube, this was not a decision made lightly. I was born with a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). EDS affects 80% of your body’s connective tissues, so it can cause problems in virtually any system. It’s not just about being “flexible,” as some people think—it’s a complex, multifaceted condition that’s difficult to navigate. Like all illnesses, EDS operates on a scale: for some, the symptoms are mild; for others, like me, the pain and discomfort can be debilitating. On top of EDS, I also live with multiple autoimmune diseases, POTS, MCAS, gastroparesis, vascular compression syndromes, visceral hypersensitivity, and chronic pain. And that’s just the beginning of the list.
My first feeding tube, an NJT (nasal jejunal tube), was placed almost two years ago after severe weight loss, constant pain, vomiting, and a gastric emptying study that showed a significant delay. We thought a brief hiatus for my stomach—six months max—would give it the rest it needed. In March 2024, I underwent surgery to address what we believed was the worst of my vascular compressions: SMAS (Superior Mesenteric Artery Syndrome). Unfortunately, my “bendy” connective tissue caused the surgery to fail, and the subsequent complications only worsened the issues. In September 2024, it was decided I needed both a gastrostomy and a jejunostomy tube.
I thought I had prepared myself. I was ready for the pain, the recovery, the granulation tissue, and the supplies. But there was one thing I wasn’t prepared for: the mental and emotional adjustment. The comments from those around me were often more hurtful than helpful. “Don’t let me see them, they’re gross.” While I understood their discomfort, what they didn’t realize was how much their words stung. It wasn’t just a tube—it was a constant reminder of my struggles, my daily fight.
In the first few weeks post-surgery, I felt immense regret. I wondered if I had “deformed” my body, and while others saw it as “gross,” they couldn’t understand the emotional toll it took on me. I had complications that required three additional hospital admissions, and I had to grieve the life I once knew while learning to embrace my new reality.
I am beyond grateful for the amazing team of medical professionals who support me. Without them, I wouldn’t be writing this today. Four months in, I’m learning to love my tubes. I’ve even bought new clothes to help me adjust. I also ensure my tubie pads match as well! As someone who loves fashion, I’ve found that while I miss what I once looked like, I’m finding myself again through experimenting with different styles. I’ve discovered that clothes with buttons are a godsend for running feeds or fluids on the go, and while most shorts are out (thanks to where my J tube sits on my waistline), I’ve learned that leggings, if sized up for extra stretch, can be both comfortable and functional.
There are still days when I wish I didn’t wake up to the beep of my Nutricia pump, but I also know that I’m incredibly fortunate to have a job I love, where I can contribute and feel a sense of purpose.
To anyone with a feeding tube—whether you’re living it or supporting someone who is—remember this: we are more than our tubes. We are daughters, sisters, mothers, friends, change-makers. We are people who happen to eat through a tube. And while you may not like looking at it, I don’t particularly enjoy watching you eat with your mouth open. But we’re all different, just trying to thrive, not just survive.
Here are some fun tubie facts:
- Yes, I have a feeding tube, but I loveee Expresso martinis.
- Yes, I have a feeding tube, and I am still overweight.
- Yes, I have a feeding tube, and I can still eat food at times.
- Yes, I have a feeding tube, and my favourite part is being able to eat while I sleep.
- Yes, I have a feeding tube, and I crave food constantly—even though I’m not hungry!
- Yes, I have a feeding tube, and I live a fairly normal life for a 30-year-old.
- Yes, I have a feeding tube, and on Wednesdays, I can still wear pink!
- Yes, I have a feeding tube, and I spend a lot of time at doctors' appointments and in the hospital.
- Yes, I have a feeding tube, and I can still work—work gives me a huge sense of purpose.
- Yes, I have a feeding tube, but I’ve never lost my sense of humour or my ability to throw shade at idiots.
- Yes, I have a feeding tube because my stomach is a useless organ that refuses to cooperate.
- Yes, I have a feeding tube, and I’ll complain about it constantly—but I’m still grateful to be better nourished.
- Yes, I have a feeding tube, and you know what? I rock those tubie pads!
- Yes, I have a feeding tube, but I am not defined by my illness.
Story contributed by Kaitlin; January 2025
Kathryn’s Story
My name is Kathryn and I am an artist and Masters student living with Gastroparesis. I have been tube fed full time full time since 2020 having had feeding tubes on and off the years prior to this.
Adapting to life with a tube can be extremely challenging. I was studying Visual Art full time at TAFE when I had my NG tube placed and I remember being so nervous to attend classes with such a visible medical device. It wasn’t easy at first. Over time I gained confidence in explaining what my feeding tube was for, and how it aided my ability to participate in the world by ensuring I had adequate nutrition while living with illness. During this time art became my outlet, and a place where I could express my lived experience of being tube fed. The highs, the lows, the complications and the achievements it supported me to reach.
I am now in my final year of studying a Masters Degree while also working part time as an artist. One of the most important things for me during this time has been to keep connected with and doing things that I love. Living with a feeding tube and illness, so much of life and identity can be medicalised and dictated by the medical profession. It can take some negotiating and planning, but making sure I’m continuing to participate and engage with the things I love makes the challenges and daily requirements of tube feeding just that little bit easier to cope with.
Life with a feeding tube looks different person to person, visible/invisible, 24hr/intermittent, bolus/pump. The most important thing is finding what works for you and your own life. Life doesn’t stop when tube feeding begins!
Story contributed by Kathryn; January 2025
Luke's Story
Luke was born full term after a standard pregnancy and birth…however as soon as Luke entered the world, he instantly had difficulty breathing and within 4 hours was transferred to the ICU at Sydney Children’s Hospital. He spent his first month of life in hospital where we discovered he had a floppy epiglottis, which was causing a number of problems for Luke. We were able to take him home with a CPAP machine and a feeding tube. Luke’s feeding tube was placed on day 2 of life and now almost 3 and a half years later it is still with us today.
There was more going on with Luke than just a floppy epiglottis and at 16 months old we received his diagnosis…a rare genetic muscular condition. So rare it doesn’t even have a name and Luke is the 6th person worldwide to be diagnosed. Having such a rare condition means there is minimal information on how his condition will impact his life. What we do know is that it affects all of Lukes muscles but has the biggest impact on the smaller muscles used for swallowing and speaking. Two months before Luke turned 2, we decided to introduce him to a blended diet. We knew and accepted Luke’s tube was going to be around for a long time and I really wanted him to be able to access whole foods, rather than just formula alone. It also gave me a chance as his Mum to be able to cook for him, share family meals and even have some of his birthday cake! It’s been one of the best decisions we have made for him.
We are so grateful for Luke’s feeding tube - it literally saved his life and keeps his airway safe. Today, Luke is a very happy 3 and a half year old. He attends an inclusive daycare 2 times a week as well as therapy about 5 times a fortnight. His life definitely isn’t that of an average 3 year old but he makes the most of it and it doesn’t bring him down.
Story contributed by Eliana (Luke's mum); January 2025
Olivia's Story
Hello, I am Olivia! I’m 19 years old and live in Adelaide. Since I was born, my experiences with feeding tubes have taken many forms. I have learnt so much about what life as a Tubie can look like.
What does it look like? It looks different for everyone. There are a variety of types of tubes, reasons people need tubes and uses for tubes such as nutrition, hydration, medication or drainage.
For me, I have a tube because I was born with birth defects including Tracheoesophageal Fistula, Oesophageal Atresia and a Laryngeal Cleft. They caused dysphagia and gastroparesis amongst other things. At different points throughout my journey, I have had a Trans-anastomotic Tube (a Nasogastric tube that runs through a surgical repair site of the oesophagus), Gastrostomy tube, Nasogastric tube, and currently a Gastro-Jejunostomy (PEG-J) tube.
Some things I would like others to know:
- We can still live a meaningful life. I have been lucky enough to travel interstate and overseas, completed year 12, play soccer, study at university, work as a youth health advocate and develop strong friendships whilst navigating life with a tube.
- Having a good support network is key. I have found the Tubie community to be a wonderfully supportive group. Simply knowing others who ‘get it’ and have been there, offers sounding boards, support and a group where I am seen for who I am beyond my health conditions.
- The value of having a good care team can’t be understated. It has taken a lot of time, seeking out services that are relevant to me and advocating for myself to find a good network of doctors. But I am now in a place where I have a supportive and knowledgeable healthcare team to support me, so I can focus on living!
- Mental health support can be just as important as physical health supports. Living with a feeding tube and health conditions can affect many parts of our lives beyond just eating and drinking. From body image to other people’s assumptions and comments to grieving our health to living differently to our peers, it is understandable that we may need help with our mental health. For me, mental health supports mean building strong friendships, going on walks and seeing a psychologist, who helps me navigate the ebbs and flows of my life.
Whilst I still have challenging times, I am incredibly grateful for the quality of life that my tube gives me, allowing me to do things that are meaningful to me.
Story contributed by Olivia; January 2025
Oscar's Story
You never imagine, when you first hold your child, that one day they may rely almost entirely on a feeding tube for their nutrition and medication. But life has a way of leading us down unexpected paths, and when that day comes, you adapt, learn, and ultimately become grateful for the medical advancements that keep your child alive and thriving.
Oscar was diagnosed with a rare degenerative disease called Cystinosis, a condition that affects every organ and cell in his body. This complex disorder means he must take over 25 medications throughout the day and night to maintain his electrolyte levels and prevent the build-up of cystine. Managing this condition is a continuous challenge, but the feeding tube has been a life-saving tool that ensures he gets the nutrition and medication he needs. The feeding tube has become an essential part of Oscar’s daily routine. While he can eat small amounts of food orally, his condition severely limits his appetite, making it nearly impossible for him to consume enough nutrients on his own.
To ensure he gets adequate nutrition and support his growth, he relies on three pump-fed meals of blended food administered directly into his stomach via the feeding tube. Beyond nutrition, the feeding tube plays a critical role in managing Oscar’s complex medication regimen. Many of his medications must begiven at precise times, even in the middle of the night. Some are essential to maintaining his electrolyte balance, which can drop dangerously low if doses are missed or delayed. Administering medications through the feeding tube ensures accuracy and efficiency, reducing the stress and discomfort of swallowing numerous pills.
The journey with a feeding tube has not been without its challenges. At first, the idea of relying on a tube was overwhelming. Learning how to operate the pump, prepare medications and feeds, and troubleshoot issues has required a lot of patience and resilience. Over time, these once-daunting tasks have become second nature and our normal. Oscar’s feeding tube is more than a medical device—it is a lifeline. It has allowed him to play, learn, and experience life without being held back by the limitations of his condition. By sharing Oscar’s story, we hope to spread awareness and understanding about feeding tubes, break down any stigmas, encourage support for medical advancements, and inspire other families navigating similar journeys to embrace the tools that give their loved ones the best chance at a fulfilling life.
Story contributed by Jenna (Oscar's mum); February 2025
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Pedro's Story
My name is Pedro Relvas, and I’m a brain tumour survivor who feeds through a tube. My journey with a feeding tube began after a 13-hour life-saving brain surgery at the International Neuroscience Institute (I.N.I.) in Hannover, Germany. The surgery left me unable to swallow, and transitioning to tube feeding became an unexpected and humbling part of my life. While it was initially a challenging adjustment, my feeding tube has become so much more than just a medical device—it’s a symbol of survival, strength, and determination.
After surgery, I could have chosen to stop doing the things I loved, but I didn’t. I learnt that we always have a choice, to work for our circumstances or make our circumstances work for us. My feeding tube has been with me through martial arts training, physical activities, and even one of my proudest achievements—winning the Men’s Masters Classic IFBB National Title. My journey proves that a feeding tube doesn’t limit what you can accomplish. It simply means adapting and finding new ways to achieve your goals.
Throughout this journey, my support network has been my rock. My kids, Kai and Laila, inspire me every single day with their love and resilience, while my partner, Chaya, has been my unwavering pillar of acceptance and encouragement. My close friends have also stood by me, driving me to be the best version of myself. Together, they’ve helped me realize that our battles aren’t meant to be fought alone—our connections are what make us stronger. We may often find ourselves alone in the ring but we have a whole corner watching over us. One of the most profound lessons my feeding tube has taught me is the power of the slight edge principle. It’s about making small, consistent choices that compound into remarkable results over time. Whether it’s pushing through a challenging workout, focusing on my recovery, or staying present for my loved ones, my tube has redefined my understanding of discipline, resilience, and personal growth.
Despite the challenges, I’ve made it my mission to embrace life with gratitude and purpose. Through my personal development business, The iAlpha Project, and my podcast, I share my story to raise awareness about living with a feeding tube and inspire others to see their struggles as opportunities for growth. Vulnerability isn’t a weakness; it’s a source of strength and connection.
Feeding Tube Awareness Week is an opportunity to challenge stereotypes and shine a light on the incredible resilience of the tubie community. I hope my story encourages others to see that a feeding tube doesn’t define us—it empowers us to live life to its fullest.
If you’re living with a feeding tube, remember; you are stronger than you know. This journey may not be the one you expected, but it’s one that can lead to remarkable growth and transformation.
After surgery, I could have chosen to stop doing the things I loved, but I didn’t. I learnt that we always have a choice, to work for our circumstances or make our circumstances work for us. My feeding tube has been with me through martial arts training, physical activities, and even one of my proudest achievements—winning the Men’s Masters Classic IFBB National Title. My journey proves that a feeding tube doesn’t limit what you can accomplish. It simply means adapting and finding new ways to achieve your goals.
Throughout this journey, my support network has been my rock. My kids, Kai and Laila, inspire me every single day with their love and resilience, while my partner, Chaya, has been my unwavering pillar of acceptance and encouragement. My close friends have also stood by me, driving me to be the best version of myself. Together, they’ve helped me realize that our battles aren’t meant to be fought alone—our connections are what make us stronger. We may often find ourselves alone in the ring but we have a whole corner watching over us. One of the most profound lessons my feeding tube has taught me is the power of the slight edge principle. It’s about making small, consistent choices that compound into remarkable results over time. Whether it’s pushing through a challenging workout, focusing on my recovery, or staying present for my loved ones, my tube has redefined my understanding of discipline, resilience, and personal growth.
Despite the challenges, I’ve made it my mission to embrace life with gratitude and purpose. Through my personal development business, The iAlpha Project, and my podcast, I share my story to raise awareness about living with a feeding tube and inspire others to see their struggles as opportunities for growth. Vulnerability isn’t a weakness; it’s a source of strength and connection.
Feeding Tube Awareness Week is an opportunity to challenge stereotypes and shine a light on the incredible resilience of the tubie community. I hope my story encourages others to see that a feeding tube doesn’t define us—it empowers us to live life to its fullest.
If you’re living with a feeding tube, remember; you are stronger than you know. This journey may not be the one you expected, but it’s one that can lead to remarkable growth and transformation.
Story contributed by Pedro; January 2025
Rory's Story
Rory has Noonan syndrome. He was born with heart disease, lung disease and JMML leukaemia. He spent the first year of his life in hospital and 2 1/2 years with oxygen support.
We have been tube feeding for nearly 5 years. Rory is now in remission and he’s started kindergarten and living his best life. He has started to eat a little bit of food by mouth. Rory receives 70% of his nutrition from his PEG nicknamed Geoffrey the G-tube.
This video, made for Feeding Tube Awareness Week, is of Rory living his best blended life.
Story and video contributed by Alex (Rory's mum); February 2025
Samuel's Story
Hi, I'm Samuel! I have had a PEG since I was 3 months old after an acid incident, which affected parts of my mouth. Due to this, I have a structural speech impairment, and require a PEG and tracheostomy (breathing tube) to survive. However, this did not deter my parents from exposing me to a lifestyle that is "as normal as possible". They continued to bring me out of the house as much as possible, preparing all of my feeds and medical devices in advance. They were not afraid of feeding me by the benches, and worked immensely hard to enrol me into a mainstream school despite numerous rejections. The constant exposure to society has made me realised that speaking and eating plays an extremely significant role in one's social life. While my lifestyle is strangely similar to others, it is vastly different due to my impaired speech and tube feeding.
In wanting to explore my own capabilities, I decided to look into my complex medical conditions by learning more about speech pathology. While it started off as a means of self-discovery, speech pathology has opened my eyes to others who have similar challenges. One thing led to another, and here I am, completing my Masters in Speech Pathology at the University of Melbourne, striving to help others with their communication and/or feeding challenges.
Story contributed by Samuel; January 2025
You can also watch a video about Samuel, ‘Acid attack survivor doesn't let his condition define him’, that was featured in The Straits Times here.
