Woman with rare chronic illness has to eat through heart but says she 'doesn't miss food'
She ‘can’t eat food’ in the same way that many other people do
A woman with a rare chronic illness has explained how she has to eat through her heart, saying she sees the set up as a 'real blessing'.
TikToker Sarah, whose handle is @nauseatedsarah, regularly posts about the interesting realities of her everyday life with a rare condition, which affects her intestines.
Her digestive system is essentially ‘paralysed’, meaning she ‘can’t eat food’ in the same way that many other people do.
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Sarah, 30, has Ehlers-Danlos Syndrome, which is a collective term for connective tissue disorders.
Her condition has resulted in something called gastroparesis, a disorder that slows or stops food moving from the stomach into the small intestine.
In one recent video, she explained how she eats, telling followers: “I eat through my heart and I’m absolutely thriving!! It’s Home Artificial Nutrition Awareness Week, so here’s my TPN set up.”
As she ‘can’t eat food’, Sarah uses a Hickman line to feed nutrients directly into her body.
She explained: “I have a condition called gastroparesis, or also known as intestinal failure. It comes as a result of having another condition called Ehlers-Danlos Syndrome, which affects all of the connective tissue in my body.
“In a nutshell, my digestive system is paralyzed so I can't eat food. If I eat I basically throw it back up. I'm in excruciating pain and sometimes it even causes a seizure.
“I have what’s called TPN – Total Parental Nutrition – and it basically means that I get fed through my heart.
“The most common questions I get when I tell people that I'm on TPN are ‘Do you still feel hungry?’
“And the answer is no, because I'm getting all of my calories and my blood sugar stays stable. So I don’t really get hungry.
“My stomach still rumbles which I think is audacious.”
Sarah said in all her 30 years, food has caused her a lot of pain, meaning to be on this form of nutrition is a ‘blessing’.
"I get asked do I miss eating and the answer is no," she went on.
"Food and I don't have a great relationship. I'm 30 and in of all those 30 years food has caused me significant pain and vomiting and just everything horrible.
"To be on this form of nutrition is a real blessing."
She said it was important to keep things ‘sterile at all times’ to avoid getting sepsis – the risk of which is ‘really high’.
“That's why I have to be aseptic in my techniques when poking up and making sure I don't get it soaking wet and what not,” she added.
Sarah said the Hickman line goes into her skin under her collarbone, and 'over and into the top' of her heart.
"I cant feel when anything is going into my bloodstream through my line but I can sometimes feel it if it's a little bit cold makes my heart flutter," she said.
Jess Hardiman