- Tess Swift, 30, from Ocean Grove, Vic travelled to Thailand with her mum and sister a decade ago
- Returning home after a lovely holiday, she was feeling very poorly… and it went on for years
- Finally in 2022, she got an answer about her mystery illness
Here she shares her story in her own words.
‘Surprise!’ my mum Virginia, then 49, beamed.
]\It was August 2015 and she’d organised a trip to Thailand for herself, me, and my sister Ally, 22.
Aged 20, I’d just completed my nursing placement as part of my uni degree, so it was a lovely gift after a gruelling four weeks working in the hospital. ‘Thank you,’ I hugged Mum tightly.
My dad, Jeremy, 50, stayed home for work.
After landing in Phuket three weeks later, we made our way to our resort in Kata Beach.
For the next two weeks, we soaked up the sun, swam and snorkelled, gorged on yummy food, and even visited an elephant sanctuary.
‘It was the trip of a lifetime.’
‘This has been the trip of a lifetime,’ I thanked Mum as we headed for the airport to go back to Oz.
But on the flight home, I felt nauseous with an upset stomach. I pinned it down to fatigue.
But a few weeks after getting home, I still couldn’t shake the queasiness.
And that October I was rushed to hospital with severe abdominal pain.
I felt nauseous and was projectile vomiting. Doctors were sure I had appendicitis, so my appendix was removed.
But as I recovered from the op back home in Bendigo, Vic, my stomach continued to stab with pain. Concerned, my parents took me back to the hospital. But doctors were stumped by my mystery illness.
A scan of my stomach didn’t show anything alarming, and I was discharged a few days later after being given pain relief and fluids.
After graduating in 2016, I was only able to work as a nurse for six months before my pain became all-consuming.
‘My illness has robbed me of my dream job,’ I sobbed.
Over the next two years, as the agony persisted and I struggled to keep down any food, I visited countless doctors and specialists.
They all had different ideas about what could be causing the symptoms, including irritable bowel syndrome. One doctor even said it was all in my head.
In 2017 I was diagnosed with gastroparesis – a condition where the stomach is paralysed and takes too long to digest food – as well as dysautonomia, which meant my body struggled to regulate my heart rate, blood pressure and temperature on its own.
But no-one could work out what’d caused it, and medications plus going on a liquid diet didn’t help.
‘It felt like I was dying…’
The following year I had to have a feeding tube to stop the vomiting and ensure I got enough nutrients. Unable to take part in family dinners or dine out with friends, I became depressed and spent all my time at home.
It felt like I was dying… especially when I was hospitalised for six weeks in 2019 due to extreme nausea and pain in my stomach. There doctors tested my blood for rare parasites, sending the samples to a specialist lab in Thailand to be tested.
But due to the pandemic, it took more than two years to get the results.
Finally, in November 2022, we had an answer.
‘You’ve tested positive for gnathostomiasis,’ the head of infectious diseases at The Alfred hospital said, explaining it was a rare parasitic infection caused by the larvae of an unsegmented roundworm.
I was horrified to learn a parasitic worm was living inside me, and had paralysed my stomach.
But I wept with relief to finally have a diagnosis. Shockingly, I was only the 68th confirmed case in Australia.
Doctors said people can contract the parasite from undercooked freshwater seafood. Incredibly, I hadn’t eaten any seafood during my trip to Thailand, but there had been some flooding and I’d walked through floodwater.
‘I won’t let it wear me down.’
Doctors suspected I’d contracted the parasite through a scratch on my leg. It was heartbreaking to learn the parasite had done irreversible damage to my body, including my bowel, stomach and colon.
My tummy had been paralysed because of floodwaters.
But determined not to let it wear me down, I decided to jokingly name my parasite Percy.
I had three rounds of antiparasitic drugs and steroids, which sadly caused secondary diagnoses, including liver disease, autoimmune issues and Cushing’s syndrome – a hormone disorder.
In February 2024 I also had to have a double hip replacement because of osteonecrosis – a condition where bone tissue dies, caused by the medication.
Sadly, despite all the treatment, doctors haven’t managed to kill the parasite, which has now been living inside me for 10 years.
I have to take up to 15 medications every day and use crutches to get around.
But I try my best to stay resilient and look ahead.
Despite still relying on a feeding tube, which is attached to my small intestine, I indulge in small portions of food on special occasions, such as a sliver of cake on my birthday.
There’s an expensive treatment available – a pacemaker for the stomach – which would be life changing for me.
But it’s $50,000 – and not covered by Medicare – so I’m saving every penny.
My friends set up a fundraiser and so far we’ve raised $4700.
‘I’m grateful to my support network.’
I’m so grateful to them and my family, who’ve supported me emotionally and financially over the years.
I’m sharing my story to encourage others to push for answers if they know something isn’t right.
Nobody knows your body better than you.
