Juliette McAleer was a busy working mum studying for her PhD when she was hospitalised late one night and diagnosed with a twisted bowel.
It turned into months in hospital, multiple traumatic surgeries and the removal of almost four-fifths of her small bowel.
It left Juliette with Short Bowel Syndrome and a completely different life to the one she had before that night in November 2020.
Short Bowel Syndrome is a rare disease where a significant amount of the small intestine is removed or damaged, and people with the condition often cannot absorb and digest the nutrients their body needs.
Juliette experienced multiple complications and was trying to keep her nutrition up in hospital via total parenteral nutrition, or TPN, meaning liquid food was administered straight into her veins.
After leaving hospital, she tried to keep eating food normally — but it wasn't working.
"While I was trying to eat a purely oral diet of food that required a fair bit of digesting by my system, I was in and out of hospital all the time with low potassium in particular, sometimes low magnesium, sometimes low iron and B12, low vitamin D," she said.
"It was like a game of whack-a-mole, to be honest ... every couple of days, there'd be some new nutritional deficiency to tackle and then we'd fix that one and then another one would pop up."
It was then that doctors suggested a feeding tube.
Juliette said she wasn't keen on the idea at first, but realised it could be her ticket to getting back to some version of normal.
"I thought, 'I have to give this a go'," she said.
"I want to live my life, I don't want to be in and out of hospital with malnutrition-related issues, I don't want to have so little energy to give to my family and loved ones and life."
Juliette took the physical and mental leap of getting a nasogastric (NG) tube, and started the process of working out how to use it.
"I had a wonderful dietitian who's associated with the local hospital. She was with me every step of the way," Juliette said.
"I think dietitians don't get the love they deserve in, you know, allied health, they are honestly champions. And for a time she was my lifeline.
"Food and nutrition is such an important part of people's lives that when you have difficulties in that area, having a person to lean on, rely on, call to troubleshoot, that is amazing."
Learning to live with a feeding tube
The 43-year-old said she was particularly anxious about returning to work with her NG tube, but her boss and colleagues were incredibly supportive.
"I was worried about being judged, I was worried about being seen on Teams with a great big tube hanging off my face, and whether my colleagues would be, you know, unduly worried about my health," she said.
"I took a photo of myself with my tube in the car and sent them all a Teams message to just say, 'Hey, next time you see me, I will look a little bit different. Here's me with a tube on my face. But please don't worry, it's a really positive step'."
Juliette said she knew she'd made the right decision when she started meeting her nutrition goals.
"To start feeling as if my brain was coming back to life was just such a key turning point in my recovery from this really serious illness," she said.
"I even had colleagues and friends and family members say to me, 'You seem more like yourself now'.
"My sense of humour had returned a bit more, I was more energetic, and more myself, really. And that was really important to me."
After a couple of months with a NG tube, Juliette and her surgeon decided to try a gastrostomy feeding tube — one that is surgically placed through the skin and directly into the stomach.
"(It's) a lot less obtrusive, which I enjoyed. It was so good to get my nose hose off my face," she said.
"As much as it was helpful and I didn't regret getting the NG, it really was quite inconvenient, having that hanging out of your nose and on your face. But no regrets."
Juliette said she still sits down to dinner with her family each night, and tries to make things as normal as possible for her and her partner's five children.
"Food is just such an integral part of family lives and social lives, and even work lives that you don't really fully appreciate how prominent food is in the world until it's no longer something you can partake in," she said.
"Nutrition is just a constant struggle, still. But the feeding tube is the one thing that makes me believe it won't always be such a struggle.
"I mean, nobody likes having a feeding tube and nobody wants one. Nobody aspires to have one. But if you need one, they can be utterly life-changing."
How does tube feeding work?
Advanced Accredited Practising Dietitian (APD) Lina Breik works with a range of patients in a range of different health situations, particularly those who have feeding tubes at home.
She said the idea of enteral tube feeding could sound daunting, but it can save lives and improve quality of life significantly.
Ms Breik explained enteral tube feeding:
- It's a way to provide nourishment to people who have difficulty eating or swallowing food normally
- It involves inserting a tube into their digestive system through the nose, mouth, or directly into the stomach or small intestine
- Some people only need a tube for a small time, while for others, long-term enteral tube feeding may be necessary allowing them to receive the nourishment they need
"It's important to note that the reasons for tube feeding can vary widely from person to person, and the appropriate course of treatment will depend on an individual's specific medical needs and condition," Ms Breik said.
Dietitians work with patients to meet their specific needs, and Ms Breik said there was no one-size-fits-all solution.
"At the end of the day, the goal is to make sure the patient is getting the nutrition they need to maintain or improve their health and wellbeing," she said.
"So, the dietitian will customise the formula to meet their specific needs and provide them with the necessary nutrients to help them on their road to recovery.
"Everyone's experience may differ, and it's always a good idea to talk to a healthcare professional to address any concerns or questions about tube feeding."
Long road ahead
For Juliette, her recovery isn't close to being over.
The constant, debilitating pain she experiences from consuming food has developed into an eating disorder, and maintaining a healthy weight has been difficult, even with the help of the tube.
"I would like to say that there's been a continuous positive trajectory, but my relationship with food is still really difficult," she said.
But Juliette is working towards a longer-term goal of being able to eat again — even if just a little.
"I know that I'm really lucky because I am able to eat some food orally, even though there's a huge disincentive for me to do it in the pain and nausea that I feel," she said.
"But I want to continually challenge my bowel to have to absorb normal food as well.
"I will be tube fed for life. But hopefully, it will need less tube feed and be able to maintain more oral intake in time. It's my goal."
