By Emma Dunn
A young woman with a paralysed stomach hasn’t been able to eat or drink anything for eight years – and is fed through her heart to survive.
Liv Rose, 25, has struggled with stomach pain since the age of three but says doctors dismissed it as ‘tummy ache’.
She struggled to eat anything other than bland foods – such as plain pasta or chicken.
Liv began vomiting undigested food but says her symptoms were dismissed for an eating disorder at first.
She was finally diagnosed with gastroparesis – when food passes through the stomach slower than it should – and pan-gut dysmotility – where the gut does not work as it should.
Now Liv has a Hickman line which goes directly into her heart so she can receive nutrition.
Liv, who is unable to work, from Chester, Cheshire, said: “I’ve had gastro pain since I was three and pain with eating.
“I had to fight to get diagnosed.
“My parents were made to feel they were overbearing.
“You don’t realise how much life revolves around food until it’s taken away from you.”
Liv struggled with pain when eating from the age of three.
She said: “I went to the doctors frequently but I was dismissed.
“They said ‘kids get tummy ache’.
“As I grew the pain got worse.”
Liv’s health deteriorated further when she was 17.
She said: “I was living off bland foods.
“Rich foods are more painful.
“I ate plain foods like pasta without sauce and pain chicken.”
Liv’s symptoms worsened when she suddenly started vomiting 2017 at the age of 17.
She said: “It happened out of the blue.”
Liv went from vomiting once a week to once a day to throwing up every time she tried to eat.
She said: “Anything I ate always came back up.
“It came back up undigested.
“We went to the GP and they automatically said ‘you’re doing it to yourself’.
“I was desperate to eat.
“I had to go to an eating disorder unit. I spent all day at a unit being assessed before they realised I was showing no signs of an eating disorder.”
Liv was then monitored and underwent a gastric emptying study before she was diagnosed with gastroparesis in March 2017.
She was fitted with a nasal feeding tube and given different treatments to try and ease her symptoms.
Liv had Botox injected into her stomach to try and hold the sphincter in place – to help the food pass through.
But doctors realised Liv also had an issue with her stomach and following tests on her gut she was diagnosed with pan-gut dysmotility at the end of 2017 – aged 18.
As Liv was still malnourished and wasn’t maintaining weight, she was put on a Hickman line so she could be fed directly through her heart in January 2018.
Liv has to clean the line carefully and regularly – as there is a high rick of blood infections such as sepsis.
The line also puts pressure on her kidney and liver.
She said: “It’s a very scary way to be fed.
“My weight is stable. My nutrition is stable.
“I have a lot more energy. My quality of life has improved.”
Liv has her bloods taken every two weeks and had to adjust to not being able to eat and enjoy the taste of food anymore.
She said: “When I could eat I still got to enjoy the taste of food.
“It’s difficult to go to not being able to eat.
“Food is such a big part of life. It’s an experience.
“I won’t stay in the room when my family are eating.
“I miss ice cream. I miss pizza – just fun foods.”
Liv was also diagnosed with nutcracker syndrome – a rare vein compression disorder – in 2021 which doctors believe may be contributing to some of her gastro pain.
Liv underwent surgery in the same year as one of her veins was being compressed and she had it taken out and replaced with a prosthetic vein.
Liv also has visceral neuropathy – which doctors are now investigating to see if it is causing her gut issues.
She said: “I’m able to get up and walk the dogs.
“I’m able to spend time with my family.
“My family has been incredible.”
