A young woman whose debilitating stomach condition causes her to vomit up to 100 times a day says she fears she could die before Christmas.
Ella Rake, from Herne Bay, now weighs between just six and seven stone and says she is virtually housebound after severe gastroparesis left her struggling to absorb food and medication.
The condition means her stomach does not empty properly, leaving food sitting inside it for hours before it often comes back up undigested.
On her worst days, Ella says she can vomit as many as 100 times.
The 22-year-old now survives on as little as one small meal a day, often a soft-boiled egg or some fruit.
“I eat solids, but I vomit it back up. Everything I pretty much eat, I throw up,” she said.
“I tend to throw up in the night. It sits in my stomach and just comes out undigested.
“But I don’t really have a choice. I’ve got to eat to live.”
As well as losing around four stone in four years, Ella says her condition repeatedly causes problems with her blood levels, particularly her potassium, which can affect the heart.
Ella was diagnosed four years ago. Picture: Barry GoodwinElla is a regular visitor to the A&E at QEQM
When her levels fall, she says she suffers severe palpitations, breathlessness and weakness, and has previously collapsed while trying to get herself to hospital.
She recalled being attached to a heart monitor which was “beeping like crazy” as her heart raced.
“When I’m really bad with the low potassium, I just can’t believe how bad I feel,” she said. “My heart’s going so bad, I can’t do it.”
Her fears are compounded by the death of her father following a heart attack in 2024.
Ella says she has repeatedly attended the Queen Elizabeth The Queen Mother Hospital in Margate but claims she is treated for the immediate problem before being discharged without a longer-term solution to her nutritional difficulties.
At the centre of her frustration is the dietetics service at East Kent Hospitals (EKH).
She says her GP at Park Surgery has written several times to hospital clinicians asking for action, including recently over her low potassium, while she claims A&E doctors have also expressed concern about the situation.
Ella has bravely shared her heartbreaking story
“My GP has been okay. I think they’re very limited with what they can do,” she said.
“Everybody, including the doctors in A&E, have constantly been frustrated and said, ‘This is ridiculous. This keeps going on.’
“My doctors have written several letters. They wrote one the other day back to my consultant to do something about the low potassium. It just seems to be the dietitians.”
Ella says she now feels it is “impossible” to get the nutritional help she needs.
She claims she can be admitted before her care changes several days later and she is ultimately discharged.
“I’ll get admitted by the doctors and then I’ll get diverted after three days, onto a different path and discharged,” she said. “Even the doctors will say, ‘This can’t be happening.’”
One recent conversation with a dietitian particularly alarmed her.
Ella claims she was told further intervention would only take place if her kidneys began to fail, despite having previously suffered an acute kidney injury (AKI) and sepsis.
The 22-year-old did have a feeding tube but it was removed after she experienced difficulties
“I was just very confused because last year I had quite a bad bout of AKI and I’ve had sepsis in the past as well,” she said.
“The fact they’re even risking it is, to me, diabolical.”
She also alleges there were suggestions during previous hospital treatment that her symptoms could be caused by an eating disorder despite her gastroparesis diagnosis.
Ella claims she was made to eat before vomiting and says her anti-sickness medication was stopped.
“It felt like nobody kind of believed me,” she said.
Ella was diagnosed with Ehlers-Danlos syndrome – a condition affecting connective tissue – at 18 after suffering health problems throughout her teenage years.
She was later seen at St Mark’s Hospital in London, where extensive stomach and bowel testing led to an official diagnosis of gastroparesis.
Ella has seen her weight drop dramatically in four years
The long-term condition causes the stomach to empty too slowly because nerves and muscles do not work properly.
She previously needed a nasal feeding tube after developing a gastric outlet obstruction and says several specialists believed tube feeding could become a long-term or potentially lifelong part of her care.
But the tube repeatedly became displaced as she continued vomiting.
“It would coil on itself and then I’d flush it and instantly throw up, so I’d know that it wasn’t in place,” she said.
“On the scans it would twist and point upwards. It would come out my mouth. It was horrible.”
Ella with a selection of her medicine and the food she cannot eat. Picture: Barry Goodwin
Ella says she felt better while receiving tube feeding but claims she has since struggled to get further nutritional support.
She also believes she struggles to absorb some medication and nutrients, saying repeated courses of high-strength vitamin D have made little difference.
Her oral anti-sickness medication can also prove ineffective, she claims, meaning she sometimes resorts to injecting medication into her thigh.
“I don’t know what else to do,” she said. “It’s the only way that I stop being sick.
“It’s pretty much destroyed my life. I can’t really do anything anymore.”
Ella is now virtually housebound
Ella struggles to shower without help and relies heavily on her mum and boyfriend Joe, while even leaving the house means thinking about where she could go if she suddenly needs to be sick.
“Everywhere I go I have to think where the toilet is,” she said. “I always carry bags anyway, but I get really nervous.
“Being sick in front of people, I don’t want to upset people. I feel constantly disgusting.”
Her illness has also forced her to put aside her childhood dream of becoming a vet.
“I’ve wanted to be a vet since I was two,” she said. “I did complete some of my college education, and then I was actually advised to stop because I just couldn’t manage it.
“I study at home, but realistically I know it’s not going to take me very far.”
“It’s pretty much destroyed my life. I can’t really do anything anymore…”
But her biggest fear is that her health will deteriorate further before she gets the help she believes she needs.
Having already lost her father following a heart attack, Ella says she worries her own heart could eventually give out when her potassium drops, and fears she may not make it to Christmas.
“I have the same sort of breakdown with my mum all the time, saying, ‘It’s going to kill me, this is going to be the end of me’,” she said.
“I’ve got a 14-year-old brother. I don’t want to leave him behind. He’s very close to me.
“I’m just afraid this is going to kill me because of how ill it does make me.
Ella still dreams of being a vet
“I just feel like I’m being passed around and no one’s taking responsibility.
“I don’t really know what else to do.”
A spokesman for East Kent Hospitals said: “We are sorry to hear of the concerns that have been raised.
“We recognise that living with complex health conditions can be very challenging for patients and their families.
“Our team work closely with patients and their loved ones to discuss concerns, explain treatment plans and consider advice from relevant specialist teams.
“Ella was discharged with a support plan in place to support her ongoing needs once she returned home.
“We are committed to ensuring patients feel listened to, respected and involved in decisions about their care.
“Any concerns about a patient’s experience are taken seriously and can be raised through our Patient Advice and Liaison Service so they can be reviewed appropriately.”