A woman from Chester, UK with a paralysed stomach has been unable to eat or drink anything for eight years and relies on her heart for sustenance to survive. Liv Rose, 25, has struggled with stomach pains since she was three, but doctors dismissed them as “tummy aches”. She found it difficult to eat anything other than bland foods like plain pasta or chicken.
Liv once began vomiting undigested food, but her symptoms were initially dismissed as an eating disorder. She was eventually diagnosed with gastroparesis, where food passes through the stomach more slowly than it should, as well as pan-gut dysmotility, where the gut does not function as it should.
Now, Liv has a Hickman line which goes directly into her heart so she receives sustenance. Liv, who is unable to work, said, “I have had stomach pains since I was three, and pain when I eat. I had to fight to get the diagnosis. My parents were made to feel overwhelmed. You don’t realise how much life revolves around food until it’s taken away from you.”
She added, “I went to the doctor frequently but I was turned away. They said, ‘Kids get stomach aches’. As I grew bigger the pain got worse.” Liv’s health deteriorated further when she was 17. She further said, “I was eating bland food. Rich food is more painful. I was eating bland food like pasta with no sauce and pain chicken.”
Liv’s symptoms worsened when she suddenly started vomiting in 2017 at the age of 17. She went from vomiting once a week to once a day and would vomit every time she tried to eat. Everything she ate kept coming back up. She spent all day in a facility being assessed before they determined that she had no signs of an eating disorder.
Liv was then monitored and underwent a gastric emptying study before being diagnosed with gastroparesis in March 2017. She was given a nasal feeding tube and various treatments to help ease her symptoms. Liv had Botox injected into her stomach to try to hold the sphincter in place – to help food get through. But doctors discovered Liv also had a problem with her stomach and after tests on her gut, she was diagnosed with pan-gut dysmotility in late 2017 at 18.
With Liv still malnourished and unable to maintain her weight, she was hooked up to a Hickman line in January 2018 so she could be fed directly through her heart. Liv has to clean the tube carefully and regularly as there is a high risk of blood infections such as sepsis. The tube also puts pressure on her kidneys and liver. She said, “It’s a very scary way to eat. My weight is stable. My diet is stable. I have a lot more energy. My quality of life has improved.”
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