Pictured: Paige Simpson, 25
A young woman who grew up with a debilitating bowel disease got food poisoning so badly at a work Christmas party that doctors removed her large intestine – and she’ll will have to wait a decade to get a transplant.
Paige Simpson, from Dubbo north-west of Sydney, was diagnosed with hollow visceral myopathy at the age of six months – a lifelong condition that impacts intestinal and bladder muscles to the point where they don’t work.
As a result, the 25-year-old never feels as though she needs to use the bathroom and relies on medical devices to drain waste from her body.
Despite carrying feeding tubes, an ileostomy bag attached to her intestine, and catheters around in a backpack throughout her schooling life, she somehow managed to hide her disease from her teachers and friends.
Before November last year, the 25-year-old worked for 60 hours per week as a barista at a café, she rented a house on her own, ate at restaurants, drank with friends on Friday nights and ‘lived a relatively normal life’.
But that all changed when her workmates went to a Chinese restaurant to celebrate the end of the year together.
Paige Simpson (pictured before she got sick) said she lived a relatively normal life until November last year, when she got food poisoning
Pictured: Paige Simpson before she got so sick her large intestine was removed. She was a healthy weight, despite her bowel condition
‘Up until that point, I had been eating on my own and didn’t need to feed myself through a drip like I used to when I was a kid, but then I got really sick after the staff Christmas party,’ she told Daily Mail Australia.
‘After that, I knew my life would never be the same again.’
At first, she thought it was regular food poisoning – she couldn’t eat or drink anything, felt sick and dehydrated, but the symptoms lasted weeks – worsening as time went on.
‘I was getting sicker and sicker, and I progressively lost about 14kg – I got down to 38kg at one point, and I’m 165cm tall’ she said.
After she got food poisoning, Paige Simpson started losing weight dramatically. She got down to 38kg when she was admitted to hospital. Pictured after losing weight
Paige was used to taking medication and getting nutrients from a bag – which she did throughout her childhood
She was violently ill and suffering from excruciating abdominal pain, but – having lived with intestinal problems all her life – Paige tried to ignore the problem and continued working long hours at the café.
Eventually, she was admitted to the Royal Prince Alfred hospital in Sydney – five hours away from her hometown – when she could barely pull herself out of bed, and was living in agony.
‘I was in so much pain my body wouldn’t tolerate pain meds anymore. I’ve never been in so much pain,’ she said.
Doctors struggled to find the cause of her abdominal pain, until they realised she had bowel intussusception – which meant part of her large intestine had caved in on itself.
Pictured: Paige after she was admitted to hospital last year. She is hoping to get a bowel transplant in the future
When Paige was admitted to hospital last year, she was so sick she could barely pull herself out of bed
At the time, Paige was too weak and malnourished to undergo surgery and was forced to live in pain for a month while doctors replenished her iron, magnesium and general nutrition to a healthy level.
‘I finally hit 50kg and was booked in to get surgery, but I had a sore leg the day before so they did an MRI and saw a blood clot in my leg,’ she said.
‘If they had done the surgery, they risked the clot moving to my lungs and I would have died.’
When the clot finally vanished, they removed her large intestine and alerted transplant teams in Melbourne.
Pictured: Paige Simpson in hospital with compression stockings on. She had a clot in her leg that could have been fatal
Paige lives with her mum full time. She used to live on her own, before she got sick in November
Even though she is now living with no large intestine, Paige doesn’t yet qualify for the much-needed transplant.
‘You basically have to be on death’s door to get one, but you still have to be healthy enough to have a major operation,’ she said.
‘My doctors think that won’t happen to me for another five or 10 years, but it freaks me out knowing I’ll have to get that sick before I can have the surgery.’
If she gets a bowel transplant – which is rarely performed in Australia – her digestive problems will largely be over.
Pictured: Paige Simpson, before she got drastically ill in November. She worked in the same coffee shop for five years
Pictured: Paige with her family. She has two younger brothers and an older sister
In the meantime, Paige is recovering from surgery to insert stents into her major arteries to widen them after about 25 different central lines were placed in her chest to feed her essential nutrients.
Each time a new IV is inserted in a vain, that vein shrinks – stents are needed to widen them again and ensure there are no blockages.
She set up a Go Fund Me, and uses the money to pay for her feeding lines, syringes, catheters, travel to and from Sydney, and medications which can cost hundreds a week.
Pictured: Paige outside Royal Prince Alfred hospital in Sydney. She was thrilled when she was allowed out for fresh air
Paige will be on blood thinners for the rest of her life, whether she gets a transplant or not, but she is determined to help others in similar situations feel as though they can be open about their illnesses.
‘My mum brought me up with the knowledge that I was really no different from anyone else, but I hid my illness for so long,’ she said.
‘I’ve had to be really open about it now, and I feel better for it.’
Paige would like to study dietetics when she recovers from her surgery.