Artwork: Everyday Cyborg: Medical Surveillance by Kathryn Lean

In a culture obsessed with appearances, a rising number of us are feeling uncomfortable in our own skin. But what if that skin happens to be flaunting a feeding tube?

Our more seasoned readers might remember when, in 1989, Andre Agassi immortalised the line “image is everything” in an ad campaign for Canon cameras. He was wearing a lion-mane-style mullet wig at the time but, nevertheless, the then-rising tennis star uttered a universal truth.

Image is powerful. It has an enormous impact on how we perceive and engage with people, brands and, in the context of our own bodies, how we feel about ourselves.

In the decades since Agassi’s line, cameras have made their way into smartphones, social media has run wild and rates of body image dissatisfaction have increased worldwide*.

Within this culture, in the enteral feeding community, research** tells us that people with feeding tubes can be “less satisfied with their body image, reported lower self-esteem and poorer quality of life”. But feelings, as we know, are fluid.

Here, three people explore some of the thoughts and emotions they’ve experienced around their tube-fed bodies – and how these have changed over time.

Elliana Kilpatrick

23, disability support worker, Perth, Western Australia

I remember quite distinctly after having my first NG placed, thinking to myself that I would rather die of whatever was wrong with me than have a permanent feeding tube. I must have been about 14 – which I don’t think is the easiest time in life for anyone figuring out identity and body image – and I was already the “sick kid” at school. But I assured myself that, so long as this tube was only temporary, it was fine.

After that I had a few years without tubes and couldn’t imagine going back there, but then my health took a big dive. I found myself with an NG again, at 20, and remember feeling so lost. Pretty soon after this, I got my PEG-J. A permanent tube made things very real.

While representation for people living with medical devices like feeding tubes has come such a long way, I feel like there’s not enough in the young adult space. I hadn’t seen anyone with a feeding tube and good quality of life. I couldn’t imagine having any kind of life with this piece of plastic, let alone one that was full or worthwhile.

I hated being looked at with pity after trying so hard to put together an outfit I felt good in. I’ve never been too bothered by staring because I kinda get that, but the pity is crushing when you’re just out trying to dance with friends or enjoy the beach.

I’d love to say there was a particular mindset that changed everything overnight but, honestly, for me, it was time. I hated my PEG-J and went to great lengths to hide and ignore it as much as I could. I hit a point, though, where I was so completely exhausted and really over hating myself so much. Then one night, in the bathrooms at a gig, my best friend, Angie, said to me: “You’re gonna make feeding tubes look so hot. If anyone can, it’s you.”

That shifted something for me.

I’d had plenty of people tell me they thought I was brave or that I inspired them but that didn’t translate at all to how I felt about myself – or wanted to feel about myself. Not once had I heard anyone talk about tube-feeding as fun, hot, or anything positive at all, so it hadn’t even occurred to me to embrace and own it.

Angie, thanks for the bathroom pep talk. It kinda changed my life. Pilates and running also played a big part in me feeling good, strong and confident in my body again. In hindsight, I don’t think I’d feel nearly as positively about my body, or as confident as I do now, if it weren’t for tube-feeding.

It took years to finally get a diagnosis of gastroparesis, likely resulting from my Ehlers-Danlos syndrome. Jejunal feeds – and total parenteral nutrition (TPN) – absolutely saved my life and I feel immensely grateful for the opportunities I have because of tube feeding.

I was actually fortunate enough to have my PEG-J removed recently, after significant improvement from a gastric electrical stimulator, which has been a really interesting adjustment. To my surprise, I miss it a little. It took a long time, but I’d come to be incredibly proud of it and loved the quality of life I had because of it.

If I could give one piece of advice to people who are new to this experience, it would be that, honestly, I wish someone had told me I was allowed to hate it. That I didn’t have to feel inspiring or brave.

It’s okay if, right now, it’s just hard. It will get easier, but you don’t have to be a constant beacon of positivity. I’d also say though that your life can still be exciting and full – not just despite, but likely because of, tube-feeding.

Juliette McAleer

45, mother and multisport athlete, public speaker and PhD candidate, Fraser Coast, Queensland

I was initially very apprehensive about the idea of having a feeding tube. I worried about a lot of things. Many of them seem silly or superficial – especially those relating to body image – but I want others to know it is normal and okay to worry about both ‘big’ and ‘little’ things when facing life-altering decisions, even if these worries are not entirely grounded in fact or reality. Which is the nature of worries, right?

I worried about pain and discomfort. I worried about how difficult it might be for me to adjust to the logistics and mechanics and routines of tube feeding. I worried about the social implications and how it might impact upon my children and family, and even my pets. My dog’s enthusiastic greetings would have to be tempered so that she didn’t jump on the tube and my cat was kicked out of my room at night because he could no longer sleep on my tummy.

I worried about going to work with a visible NG across my face, thinking it might impact upon others’ perceptions of my capabilities, functioning or professionalism. I worried that the dysfunctional relationship I already had with food and eating might be amplified once a tube was placed. Spoiler alert: It did!

I was already struggling with incorporating my life-long illness and altered anatomy into my sense of identity and self, and adding a tube on top of this felt overwhelming to me, at the time. This is what I think clinicians and those around us often don’t fully appreciate. By the time we are at a point of acquiring a feeding tube, all of us have been through major health struggles that have led us to this point.

I started on TPN during a six-month hospital stay, after a sudden medical emergency ended in four emergency surgeries, a chopper flight from my regional home town to a larger hospital in the city, and losing most of my small bowel and stomach.

I left hospital tube-free, determined I would not ‘admit defeat’. I tried my best to eat what I could but, without a feeding tube and with a diagnosis of short bowel syndrome-associated intestinal failure, I would have faced a life of pain and chronic malnutrition.

Having an NG placed felt temporary and, even though it was more visible to everyone else, I think I coped better with it from a body-image perspective because it could be pulled out without leaving a trace. Once my MIC-KEY button was placed, the reality of a probable lifetime of tube-feeding became more salient for me.

As a triathlete, initially, I would wear my t-shirt down over my tube when running, but I found it was far more comfortable to run with my shirt tucked up under my sports bra or to simply wear a crop top. For a while, I was very self-conscious about the fact that people would see the massive scar up the middle of my tummy, my stolen belly button and the MIC-KEY button sticking out of my guts.

It’s not an objectively pretty sight and I worried about subjecting others to it. But slowly, I have come to realise that most people don’t actually care what you look like. And without my tube, there is no way I could have successfully crossed the finish lines of four half-marathons, Tour de Brisbane, four triathlons and a marathon last year.

When I crossed the finish line of the Gold Coast Marathon, wearing my specially designed tube-feeding running vest with my pump attached to my button, the physicians at the medical tent immediately cannulated me to test my blood for the nutritional and electrolyte abnormalities that used to land me in hospital regularly.

When they ran the tests, my bloods were perfect. I think I was prouder of this result than I was of running a marathon!

My tube has helped me gain an appreciation for what my body is capable of with the right nutrition. As someone who has struggled with an eating disorder post-tube placement, my tube-fuelled athletic achievements have also been integral in helping me to find and embrace strength and health, rather than an obsession with control and becoming the smallest version of myself.

Early on, one of the things that helped me feel more confident in myself was to try and personalise the experience of tube-feeding with the help of companies like Tubie Fun and a few Etsy sellers who make cute accessories for tubies. When I first got my tube, one of the things I focused on was choosing a matching tubie pad, clip and port cover set to go with my work outfits each day.

I love long, flowing dresses but, unless they have buttons down the front, they can make it tricky to manage tube-feeding. One of the best things I did for myself was to take my dresses to a clothing mending service to have large buttonholes sewn into the sides to fit my extension and tubing through, or to unpick parts of the seams to accommodate the tube.

These seemingly small things made such a difference to my mindset. I think it was a way of asserting my own style and personality over what felt like a very clinical and medical thing.

Since getting my tube, I’ve heard stories of tube-fed people out there living awesome lives – as parents, grandparents, artists, bodybuilders, athletes, musicians, academics and so many other things. Every one of these lives helps, by example, to challenge the “tragedy” narrative so often associated with tube-feeding and to highlight what properly nourished bodies can do and achieve, rather than what they look like.

Lewis Railton

16, high-school student, Brisbane, Queensland

I have a feeding tube because I had a stroke, when I was three years old, that severely impacted my eating. I’ve had my permanent low-profile MIC-KEY button since I was nine and while it hasn’t really impacted my confidence or the way I feel about my body, I’m conscious of when I want to show – and not show – my feeding tube to the world.

Recently I’ve decided that if I’m at the beach, I’m going to be wearing a rashie. I don't really want to show my stoma off to everybody. Only my family and friends get the privilege of seeing my naked torso. Because some people haven’t seen a button before it can invite stares and questions. I just want to hang with my friends.

That said, I’ve been in a photoshoot with my shirt off. It was with other tube-fed kids and adults including Pedro Relvas, who’s a fitness coach and bodybuilder. In the company of other tubies, it felt right to bare all – although I might invest in a spray tan and some tattoos before going shirtless next to Pedro again!

When I first got my G-tube, I was told this would mean being hooked up to a pump 24 hours a day and not eating anything orally, but this hasn’t been the case. Having a feeding tube hasn’t stopped me from doing anything. In fact, it's the opposite. And to those who are new to this experience, I’d say: Your life isn’t over, this button helps you have a life and it gives you some freedom back.

It is scary at first, but then you get over it. And if your friends are anything like mine, they’ll be surprisingly cool about it. To them, I’m just Lewis – and this is the way I eat. And recently, they’ve really had my back.

My mum was asked to sign a form saying I’d be tube-fed with support at school, separately from my peers, but could bring along one friend “for mental moral support”. My mum and I weren’t having a bar of this. Because I only have use of one hand – a side-effect of my stroke – I mastered tube-feeding myself, independently, with my strong hand.

I now feed myself with my friends during breaks at school in the green space, with no PPE and no sterilisation. And you know what? I haven’t died yet!

* Body Image Distress and Its Associations From an International Sample of Men and Women Across the Adult Life Span: Web-Based Survey Study. JMIR Formative Research, November 2021. Accessed via: ncbi.nlm.nih.gov/pmc/articles/PMC8603168

** Nutritional status, perceived body image and eating behaviours in adults with cystic fibrosis. The American Journal of Clinical Nutrition, February 2007. Accessed via: pubmed.ncbi.nlm.nih.gov/17007968

This article was made in partnership with Avanos. For easily digestible information about tube-feeding at any age and any stage, visit TubeFed by Avanos.

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