Tubie to Be

Kate Thomas

Journalist Kate Thomas will soon have a feeding tube placed. In an effort to face her fears around this looming unknown, she interviewed two people who are tube-feeding and making it their own. Here’s where Kate’s curiosity led her.

I’ve known for some time that tube-feeding would be a likely outcome for me. That one day I’d probably need to have my Sunday roasts blended and pumped through to my stomach. But I was harshly reminded of this likelihood early last year, when I choked on a piece of pasta.

It was my favourite meal – and pasta-bly the worst kind of reminder (forgive the pun).

Searching health advice on Google is usually considered a very bad idea. An inquisitive search about your medical condition or symptom can lead to a litany of doomsday reading – and when you search for a degenerative condition, such as mine, you may as well pack up your laptop and live today as if it’s your last.

So when it came time to research tube-feeding, I was wary. I turned to Google and whispered into its search engine my questions and fears: Is tube-feeding painful? Do you leave the tube in? What specialist do you speak to about tube-feeding? Does tube-feeding limit your life?

I wanted to be prepared and know my options when meeting with a doctor. But what I found online was not what I needed or wanted to know. I was looking for something more tangible and real.

I wanted the lived experiences. The funny stories of tube formula exploding all over the ceiling. The times of hopelessness, the trial and error of finding the right tube.

This was why, when approached to write this piece, I leapt at the opportunity. Here was my chance to talk to people about their experiences without feeling intrusive or nosey. I could come at this under the guise of being a journalist on the hunt for a good story, all the while inserting my personal anxieties into the interview questions.

As it turned out, this soon-to-be tubie newbie needn’t have worried. All of my hesitations were about to be absolved by two conversations.

“I’m known for my obsession with bubble tea, that’s my thing,” Jess Cochran says over a Zoom call.

Jess, who has a PEG-J (gastrostomy- jejunostomy) tube, is a self-declared foodie. “Down to the bone,” they say. “Especially being in Melbourne, we obviously have a great food scene.”

Jess Cochran

Trying to hide my shock and cautious excitement, I replied that I thought once you have a tube, you, well, can’t eat food.

“No, [for me] it’s encouraged,” Jess explains. “In a medical way it helps you keep that muscle motility in your oesophagus. Some people may not necessarily be able to swallow food but they’re still able to taste it, and chew it, then they just spit it out. As long as it’s actually safe to have something in your mouth, keeping that connection is really important.”

This was one of many myths Jess would bust for me.

With wide-eyed warmth, Jess openly described their first encounters with tube-feeding and the many mishaps and challenges they experienced. Jess advised me to start my research early. They also emphasised the importance of finding activities that don’t solely revolve around food – but to remain engaged during meal times. Jess said I should find a doctor who’s receptive to me, but also spoke of the value of having a friend or family member as an ally at medical appointments.

“There are a lot of things that I didn’t know as I was preparing myself,” Jess explains. “So I think if you get a warning sign, start early.”

Jess’s most surprising advice was to turn to social media. As part of starting to prepare for their tube-feeding journey, Jess found the online tubie community.

“It can be really hard to connect with a complete group of strangers online,” Jess says. ‘But when it comes to the tubie community – whether it’s an adult who’s tube-fed, a parent whose children are tube-fed, or anything in between – everyone and anyone is on there. You’ll reach out looking for something, or be caught on holiday when you lose your feed, and people will run to your aid. They’re really such kind, incredible people.”

Another person who has wielded the power of social media is Deren Kıralp, who goes by the handle @whos_deren. In many respects, Deren is an ordinary 18-year-old. He loves going to the beach with friends and lives in Cyprus with his parents and twin sister. Unlike other 18-year-olds, though, he has amassed almost 165,000 followers on video-sharing app, TikTok.

“I started [making TikTok videos] in lockdown for Covid,” says Deren when we speak. “It started as doing fun stuff with my sister at home – like dances – but I deleted the videos because they were cringe.

“But when I saw other people who tube-feed share what they’re going through, I was like, why don’t I do it? I have the material to show the world. I can spread awareness. People really don’t know about it. Even if one person learns something, that’s a win for me. So I just started sharing stuff.”

Deren Kıralp

The first video Deren posted was of him setting up a feed. It went viral. “Everybody was commenting, like, what’s that? Is that how he eats? Do you get hungry? Everyone was being so encouraging, so supportive,” he recalls.

But initially, Deren wasn’t confident or comfortable with his tube. When he got his NJ (nasojejunal) tube, he resolved that “this is going to be who I am for a while”, but ended up needing to continue tube-feeding. In those first few months, Deren didn’t leave home and stopped going to school.

“I was really not ready for how to do the feeds outside,’ he says. “How would I manage?”

After a while, Deren came to the conclusion that he couldn’t stay home anymore because, frankly, he “was really bored”. The first outing he had was to visit a friend, but as with many firsts, it had its challenges.

“I didn’t have a real feed bag, those that have the hooks, so I just used a normal bag, but the pump was alarming at me,” says Deren. “So next time, I just brought my pole. Then we started slowly going out with friends. Very slowly, though. I got used to people’s looks.”

Summer came and Deren started going to the beach. He’d transitioned to a surgical ‘dangler’ (long) tube, meaning he’d have to plaster it to his body. “It looked really absurd because the plaster was white. My full abdomen was covered in white. People would look,” Deren says.

“One of my friends at the time said, ‘give me a tube and I will plaster my abdomen, so when people look at you, they can look at me too. There’s no need to be shy or embarrassed’. Of course I didn’t let her do that, but it was really sweet of her to say.”

Now Deren feels differently about his tube – comfortable even. His main piece of advice is to not be embarrassed, but to “be confident”. However, he also concedes that advice “doesn’t really work”.

“As much as people tell you it’s okay, people look. You still get shy,” he says. “So I’m probably not going to say that as advice, but I would say that with time those looks and stares will get better for you. They won’t stop, but you won’t feel them as much, and you won’t be embarrassed or be shy.”

The thought of tube-feeding is still daunting to me. The idea of not consuming food the ‘usual’ way will be something I will need to adapt to. But that’s like anyone with any type of change. It takes time.

As I learnt from Jess and Deren, anyone can take something they’ve done forever one way – like eating – and find a new, just as fulfilling (and filling) way to achieve it. Also, the internet isn’t all doom and gloom, it’s also a place for community and shared learning.

Before we end our chat, Jess says: “Even if you don’t have a diagnosis or a tube yet, you can go and join those communities. They understand that it’s a long, tedious and difficult process, and they’ll back you the whole way. They may never meet you in real life, but they will be there for you. If there was ever any community to take that plunge with, it would be the tubie community.”