A woman has revealed how living with a paralysed stomach means she hasn’t been able to eat or drink anything for eight years as she is fed through her heart to survive.
Liv Rose, 25, from Chester, Cheshire started struggling with stomach pain when she was three, but doctors initially believed it was a normal part of growing up.
When she began vomiting undigested food she was tested for an eating disorder, but 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 – at the age of 17.
Now Rose has a Hickman line which goes directly into her heart so she can receive nutrition.
“I went to the doctors frequently as a child but my parents were always told ‘kids get tummy ache’,” Rose explains.
“As I grew the pain got worse.”
As she got older Rose says she struggled to eat anything other than plain foods such as pasta without sauce or chicken.
“I was living off bland foods as rich foods were more painful.”
Her symptoms worsened in 2017, when she was 17 and suddenly started vomiting.
“It happened out of the blue,” she explains.
Her health deteriorated further when she went from vomiting once a week, then to once a day and finally throwing up every time she tried to eat.
“Anything I ate always came back up,” she says.
“It came back up undigested.
“We went to the GP who wondered if I was doing it to myself, but I was desperate to eat.
“I had to go to an eating disorder unit and spent all day being assessed before they realised I was showing no signs of an eating disorder.”
Rose underwent a gastric emptying study before she was finally diagnosed with gastroparesis in March 2017.
She was fitted with a nasal feeding tube and given different treatments to try and ease her symptoms.
She also had Botox injected into her stomach to try and hold the sphincter in place – to help the food pass through.
But doctors realised Rose 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.
By January 2018, as she was still malnourished and wasn’t maintaining weight, Rose was put on a Hickman line so she could be fed directly through her heart.
She 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.
“It’s a very scary way to be fed,” she explains.
“But my weight and nutrition is stable. I also have a lot more energy and my quality of life has improved.”
Rose has since had to adjust to not being able to eat anymore.
“When I could eat I still got to enjoy the taste of food,” she explains.
“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.”
In 2021 Rose was also diagnosed with nutcracker syndrome – a rare vein compression disorder – which doctors believe may be contributing to some of her gastro pain.
She 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.
Rose also has visceral neuropathy, which doctors are now investigating to see if it is causing her gut issues.
“My family has been incredible,” she adds.
“You don’t realise how much life revolves around food until it’s taken away from you.”
What is gastroparesis?
According to the charity Guts UK gastroparesis is a chronic (long-term) condition that affects the stomach.
In gastroparesis, the stomach does not empty its contents in the usual way. There is no obstruction or structural abnormality that causes the symptoms, it is actually down to the nerves that tell the stomach to empty not being effective, so the stomach is too slow in moving food through.
Gastroparesis can affect people of all ages, but it is most often diagnosed in people aged 18 to 39. It is more common in adults, than children and the diagnosis is given to females twice as often as males.
The number of people diagnosed is 14 per 100,000 people in the UK, making it a rare condition.
Symptoms of gastroparesis can include:
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Nausea (feeling sick).
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Vomiting (being sick).
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Abdominal pain.
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Feeling full after few mouthfuls of a normal sized meal (early satiety).
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An inability to finish a meal.
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Bloating.
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Belching.
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Diet changes – for example eating four to six small meals a day, rather than three large meals, reducing the amount of insoluble fibre you eat, having a liquid diet (for example, foods like soups or meals blended in a food processor)
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Medicines – to help food move through your stomach faster, such as metoclopramide or domperidone
to stop you feeling sick and being sick -
Help with pain
Depending on your symptoms, you may be offered other treatments including:
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A feeding tube if you have malnutrition (a feeding tube can help you get nutrients).
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Botulinum toxin injections could also help relax the valve between your stomach and small intestine
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Gastro-electrical stimulation, where an electrical device is placed in the abdomen to help your stomach muscles work (this may not be available on the NHS)
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Surgery to reshape your stomach to help food pass through it more easily
Additional reporting SWNS.