Tubie of Influence

This viral sensation is showing the world what tube-feeding really looks like. In her case, a newlywed health professional who won’t sacrifice fun, friends and the hope of a future family.

Stephanie Kelly has told everyone – specifically, a half-million-strong social media following – precisely how often she does a poo.

This information is of interest because, unlike your stock-standard stomach, Steph’s doesn’t digest food.

“Do I still poop? The answer is yes,” says the 28-year-old Sydneysider in one of her videos, addressing a common question from her TikTok audience.

As a nurse, she can tell us with authority that ‘poop’ is not only made up of food waste, but also secretions made by our organs, such as bile and mucus. “It’s not much, but I still do go,” she says. “Probably about once a fortnight.”

In spreading awareness of life with chronic conditions and feeding tubes, Steph doesn’t shy from sharing such details. Millions of people are intimately acquainted with her nightly bedtime routine – Steph’s most popular video to date – where she methodically prepares her overnight total parenteral nutrition (TPN), intravenous (IV) fluids and jejunostomy (J) tube feed.

Her ‘how-tos’ range from maintaining a relationship while frequently unwell to fake-tanning with an IV central line. She often reviews her hospital meals (favouring porridge, macaroni cheese and mashed potato) and once told the tale of how her poodle, Oatley, bolted at a cat while tangled in her TPN tubes.

Often confined to a hospital bed, surrounded by fairy lights, Starbucks- laden friends and Lego builds, her sweetness and sincerity shine through the direst of scenarios. In June of last year she married her long-term partner, Adam, in a beautiful celebration before a months’ long stay in hospital, where she needed several blood transfusions.

Always teaching and staunchly optimistic, Steph takes her devoted followers through every high and low. Here, she reflects on her tube-feeding journey – and how it has led her to the role of ‘accidental’ advocate.

Steph, can you tell us why, on TikTok in particular, there’s an astonishing amount of tube- feeding content being shared?

I think a lot of people on TikTok started doing their ‘get ready for bed and set up my tube-feeding stuff with me’ videos. And you’ve got cystic fibrosis patients with feeding tubes, you’ve got eating disorder recovery girls and boys, you’ve got people with my conditions. It’s beautiful to see that we are all connected by feeding tubes – to see that there’s a person on the other side of the world that’s going through exactly what I’m going through.

It’s also really lovely for others to see and I love educating. People think they know what someone with feeding tubes looks like, but we don’t have a ‘look’. TikTok shows people that so many of us go home and set up our tube-feeds and you’d never know.

Tube-feeding has been a big part of your life. When did you start?

I first had a feeding tube when I was a teenager. I have Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), along with heart conditions including supraventricular tachycardia and atrial fibrillation. As a child my blood pressure would drop and my heart rate would go up. I would pass out, I would lose control of things. It was very unpredictable and random.

I also had a potassium-wasting channelopathy, which is so rare. In 2010 I temporarily lost my ability to swallow – I had dysphagia – so I needed a nasogastric (NG) feeding tube for a few weeks. That was my first experience of tube-feeding and I wouldn’t say it was a negative one.

I had the discomfort of getting it put in, but once I got used to it, it was easy. Then I had no troubles at all for a while. I went through life, did my nursing degree – which was a big thing, because I just didn’t think that I could do that, especially with how debilitating my POTS and EDS was – and then I worked for four years at The Children’s Hospital at Westmead, which was where I pretty much grew up.

That was really, really fulfilling. I loved being back there, treating children with feeding tubes. And then one night after work, in March 2018, Adam and I had a car accident. At the time, I thought I was just dealing with shoulder, rib cage and neck injuries, and only expected to be off work for a few months. But I also had a nerve injury. My neck was really bad and I had to have surgery on both shoulders. So a year went by.

At what point did you realise that eating was an issue?

I’ve always had a really bad stomach and would randomly vomit. Because of my EDS, my stomach has always been mildly delayed in emptying, which would explain the occasional flare of vomiting, but this got a lot worse a year after the accident. I was losing so much weight that my gastroenterologist recommended we put in a nasojejunal (NJ) tube to try and keep my weight up. So that was my first experience with an NJ.

At that point, I hadn’t joined any support groups. I don’t know if I just couldn’t find it, but I couldn’t see any community of people who had tubes and were advocating. I just thought, ‘Oh my God, I’m a 23-year-old with an NJ’. Because I had only worked with children who had feeding tubes – and had one myself when I was younger – I thought it was a very childlike thing to have. And my condition just got worse and worse.

I was vomiting up the NJ because even though my feeds were going to my intestine, my stomach still couldn’t empty itself. So I had an NG and an NJ, and I think that was probably the lowest point, mentally, because I didn’t really know how to process what was happening to me. I hadn’t seen anyone else with these tubes and I felt like I’d lost my independence. At that point I couldn't eat, I couldn’t go out with friends. I felt very isolated.

I had those tubes for six to nine months and then my medical team said, ‘This is looking like a long-term thing. Your stomach is paralysed, so we’re going to put in long-term tubes’. First I had a gastrostomy-jejunostomy (GJ) tube and I didn’t mind that, but unfortunately, the J portion kept coming up and flipping. So then they said, we’ll put in the two – the G and the J – and that’s where I’m still at. I still have both and, honestly, they have given me so much life and freedom.

I want to rewind a bit there and ask, how did you feel, after overcoming numerous challenges and scoring your dream job, to dramatically regress health-wise?

Looking back, it was a bit of a blur. I remember a lot of people were like, “I just can’t believe this has happened to you”. And I don’t think I actually even – I’m going to use the word digest, which is funny, because I don’t digest – but I couldn’t actually digest what was happening, or sit with it, for a really long time. I was so traumatised and saddened by the experience that I don’t think I processed the emotions until a year or two later.

Not until I got some stability with my tube feeding and had the long- term tubes put in did I actually go into therapy, because I thought I was fine.

I had started to withdraw socially, I didn’t want to hang out with friends. And the therapist asked, “Why is that?” I was like, well, I don’t really have much to talk about. I’m not doing anything. And she said, “Do you feel like you have nothing to talk about because you’re not working?’ And then I was like, oh my gosh, I’ve lost my dream job that I worked so hard to get.

There was so much grieving that I did after the accident, but it wasn’t until that moment that I realised I was processing that grief.

At that point, I was told I would probably never work again. And if we’d had this conversation two years ago, I would have been a total mess. But now that I’m back working as a nurse – at the moment, in a special care nursery – I feel like I’ve found a whole new purpose.

Nowadays, what does eating and tube-feeding look like for you?

I wake up in the morning and I’ll disconnect my overnight tube-feeds, which run at a slow rate and are called ‘trickle feeds’. Because I now get most of my nutrition through TPN, the trickle feeds are just there to remind my intestines that food still has to go through, because your stomach and intestines are a muscle – and if you don’t use it, you lose it.

I don’t have much of an appetite until later in the day because my stomach, essentially, doesn’t work. I get a couple of my medications through my J tube and the rest goes intravenously. My next medications are at midday, so wherever I go – even if I’m at work – I carry my little MIC-KEY connector and a syringe with my medication. Then I have more medications at about four or five in the afternoon, and then again before bed. I’m always disconnecting and reconnecting.

I have both a G dangler tube and a MIC-KEY button. My dangler is for drainage, so everything I eat orally needs to go out of that, because if it goes through, I get really bad pain and obstructions. I drain two or three times a day. If I eat at say, 1pm, then I’ll drain at around 4 or 5pm, but the timing differs based on the richness of the food. If it’s bland, it can stay there longer. If it’s hot chips, it can stay there all day. But if it’s butter chicken, it’s got to come out within an hour or two because otherwise I get really unwell.

I’ve had my draining tube for a few years now, and while there are risks associated with it – similar to excessive vomiting – thankfully I’ve had no issues. It’s been life-changing because I can go out and eat with friends. And even if it’s a rich meal that I can’t tolerate, my friends all know about it and I can just go and drain in the toilet.

It’s hard to judge what my stomach will do, so sometimes my husband and I will be on our way home from a meal and have to stop in at McDonald’s so I can go to the bathroom and drain.

If you’d told me five years ago that this would be my life, I would have been like, “Whoa, that’s too much to handle. What do you mean I have to drain every time I eat?” But having the perspective of, well, if you don’t do that, you can’t eat at all, I’d much rather this life. I have that freedom – and not everyone does. Everyone’s feeding- tube journey and conditions are very different. But yeah, it’s wild.

Getting the breadth and diversity of tube-feeding out there is so important – and you’re doing this through both modelling and content creation. When did this part of your working life kick off?

I’ve always secretly loved Australia's Next Top Model, but never in my wildest dreams did I ever think I’d be modelling. And then one time when I was admitted at RPA [Royal Prince Alfred Hospital], I found my beautiful friend, Maddie. She was documenting her cancer journey on Instagram, and I was like, “I’m in the same hospital!”

When you find another young person in an adult’s hospital, it’s like you’ve struck gold. You’re like, oh my gosh, you know exactly what I’m going through. All their friends are out on a Friday night as well, while you’re in hospital, missing out. No one else really gets it.

Maddie invited me to an event run by Cancer Chicks, a charity co-founded by my now good friend Ricki, who went through her own battle with cancer and found that there was nothing for young women. No connecting, no groups or stuff like that. So she made her own gorgeous charity.

At the time, when Maddie invited me to come to a Cancer Chicks event, I said, “Well, I don’t have cancer, so I don’t think I can.” And Maddie said, “You know what? Suffering is suffering. You’ve got a central line, you’re having surgeries, you’re in hospital all the time. It’s the same.” So I went along to a Pilates class with these girls and they were gorgeous.

I’ve found that in a lot of online support groups, people can get really caught up in the negative side of their illness. Unfortunately, that consumes them. What I loved about this group was that all these girls, whether they’d been in remission for a decade or had just started their journey, were like, “I’ve got this going on, but I’m also dancing every week and I have work” – there was just this lust for life. And I value that in support groups, because sometimes we can get really caught up in the negative parts of our stories.

So I joined Cancer Chicks and we opened up the group for ‘Chronic Chicks’ and branched out. At one of our retreats we were doing a photo shoot and we were all showing our scars. And I was like, well, I’ve got feeding tubes, so let’s take photos of them. One of the board members said to me, “You should be doing this more often” and connected me with someone they knew at Australian Fashion Week.

Just a few months later, I was walking in the Future of Fashion show. News outlets contacted me and wrote about me as the ‘Aussie nurse with feeding tubes’, which was great, because young people with feeding tubes, feeling different from their peers, could now see this model just like them on a catwalk.

That was in May 2022 and since then, you’ve amassed a colossal social following. How did this happen?

I started sharing content at the end of that year and in just six months had almost 100,000 followers on TikTok, so it grew so quickly. I’m with an agency now and I’m starting to get clothes and things sent to me. My agency asked me, “What are your goals?” And I said, “This was a little bit of an accident”.

I didn’t actually mean to make this almost a career. But now that I have, I’m going with it, because I think there could be really big changes made. One of my videos has 20 million views, and so many people have seen tubes now and they know of TPN.

Looking ahead, what are you excited about – both professionally and personally?

I’m really excited about working with more brands, because who says that people with disabilities and with feeding tubes aren’t consumers? We consume! I mean, to be honest, I think I consume more than the average person because I’m stuck in hospital with nothing else to do. We are the target market that no one realises is there. So yeah, that’s my goal professionally.

Adam and I are also planning on having a family. A popular question I get on TikTok is, can you fall pregnant? And yeah, it’s happening, don’t worry! I’ve seen a fertility specialist and a high-risk obstetrician and now that I’m at a healthy weight, my reproductive system is all good to go. So I’m very excited to show that whole stage of my life.

In one of your social media captions you wrote that it took you a long time to accept your body with its scars and tubes. How do you feel about your body now?

I wouldn’t lie and say that I’m 100 per cent happy with my body. I think it would take a long, long time to get to that point – just in general, tubes or no tubes. It took a while to learn to love a body that was already a bit damaged, and then had been in an accident and got more damaged. You can feel like your body has kind of betrayed you.

Then with the tubes, I kept getting infections, so I was really frustrated. I just felt like I had this constant smell and that got in the way of intimacy and wanting to go out. My tubes were making me very insecure. I would say it took a good year of looking at myself in the mirror every day before a shower and thinking, “If I didn’t have these tubes, I wouldn’t be here”.

I think that perspective is so important. Feeding tubes are not the enemy. If they get infected or blocked, or if I need surgery, those tubes are not the enemy. They are the reason why I’m still here and the reason why I’ve now become an influencer, which has given me this whole different outlook on life. And I’m grateful for it.

Hear more from Steph on the Tubie Talks podcast, wherever you like to listen to your pods.