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.<\/p>\n
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.<\/p>\n
The condition means her stomach does not empty properly, leaving food sitting inside it for hours before it often comes back up undigested.<\/p>\n
On her worst days, Ella says she can vomit as many as 100 times.<\/p>\n
The 22-year-old now survives on as little as one small meal a day, often a soft-boiled egg or some fruit.<\/p>\n
\u201cI eat solids, but I vomit it back up. Everything I pretty much eat, I throw up,\u201d she said.<\/p>\n
\u201cI tend to throw up in the night. It sits in my stomach and just comes out undigested.<\/p>\n
\u201cBut I don\u2019t really have a choice. I\u2019ve got to eat to live.\u201d<\/p>\n
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.<\/p>\n
Ella was diagnosed four years ago. Picture: Barry Goodwin
Ella is a regular visitor to the A&E at QEQM<\/p>\n
When her levels fall, she says she suffers severe palpitations, breathlessness and weakness, and has previously collapsed while trying to get herself to hospital.<\/p>\n
She recalled being attached to a heart monitor which was \u201cbeeping like crazy\u201d as her heart raced.<\/p>\n
\u201cWhen I\u2019m really bad with the low potassium, I just can\u2019t believe how bad I feel,\u201d she said. \u201cMy heart\u2019s going so bad, I can\u2019t do it.\u201d<\/p>\n
Her fears are compounded by the death of her father following a heart attack in 2024.<\/p>\n
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.<\/p>\n
At the centre of her frustration is the dietetics service at East Kent Hospitals (EKH).<\/p>\n
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.<\/p>\n<\/p>\n
Ella has bravely shared her heartbreaking story<\/p>\n
\u201cMy GP has been okay. I think they\u2019re very limited with what they can do,\u201d she said.<\/p>\n
\u201cEverybody, including the doctors in A&E, have constantly been frustrated and said, \u2018This is ridiculous. This keeps going on.\u2019<\/p>\n
\u201cMy 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.\u201d<\/p>\n
Ella says she now feels it is \u201cimpossible\u201d to get the nutritional help she needs.<\/p>\n
She claims she can be admitted before her care changes several days later and she is ultimately discharged.<\/p>\n
\u201cI\u2019ll get admitted by the doctors and then I\u2019ll get diverted after three days, onto a different path and discharged,\u201d she said. \u201cEven the doctors will say, \u2018This can\u2019t be happening.\u2019\u201d<\/p>\n
One recent conversation with a dietitian particularly alarmed her.<\/p>\n
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.<\/p>\n
The 22-year-old did have a feeding tube but it was removed after she experienced difficulties<\/p>\n
\u201cI was just very confused because last year I had quite a bad bout of AKI and I\u2019ve had sepsis in the past as well,\u201d she said.<\/p>\n
\u201cThe fact they\u2019re even risking it is, to me, diabolical.\u201d<\/p>\n
She also alleges there were suggestions during previous hospital treatment that her symptoms could be caused by an eating disorder despite her gastroparesis diagnosis.<\/p>\n
Ella claims she was made to eat before vomiting and says her anti-sickness medication was stopped.<\/p>\n
\u201cIt felt like nobody kind of believed me,\u201d she said.<\/p>\n
Ella was diagnosed with Ehlers-Danlos syndrome – a condition affecting connective tissue – at 18 after suffering health problems throughout her teenage years.<\/p>\n
She was later seen at St Mark\u2019s Hospital in London, where extensive stomach and bowel testing led to an official diagnosis of gastroparesis.<\/p>\n
Ella has seen her weight drop dramatically in four years<\/p>\n
The long-term condition causes the stomach to empty too slowly because nerves and muscles do not work properly.<\/p>\n
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.<\/p>\n
But the tube repeatedly became displaced as she continued vomiting.<\/p>\n
\u201cIt would coil on itself and then I\u2019d flush it and instantly throw up, so I\u2019d know that it wasn\u2019t in place,\u201d she said.<\/p>\n
\u201cOn the scans it would twist and point upwards. It would come out my mouth. It was horrible.\u201d<\/p>\n
Ella with a selection of her medicine and the food she cannot eat. Picture: Barry Goodwin<\/p>\n
Ella says she felt better while receiving tube feeding but claims she has since struggled to get further nutritional support.<\/p>\n
She also believes she struggles to absorb some medication and nutrients, saying repeated courses of high-strength vitamin D have made little difference.<\/p>\n
Her oral anti-sickness medication can also prove ineffective, she claims, meaning she sometimes resorts to injecting medication into her thigh.<\/p>\n
\u201cI don\u2019t know what else to do,\u201d she said. \u201cIt\u2019s the only way that I stop being sick.<\/p>\n
\u201cIt\u2019s pretty much destroyed my life. I can\u2019t really do anything anymore.\u201d<\/p>\n
Ella is now virtually housebound<\/p>\n
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.<\/p>\n
\u201cEverywhere I go I have to think where the toilet is,\u201d she said. \u201cI always carry bags anyway, but I get really nervous.<\/p>\n
\u201cBeing sick in front of people, I don\u2019t want to upset people. I feel constantly disgusting.\u201d<\/p>\n
Her illness has also forced her to put aside her childhood dream of becoming a vet.<\/p>\n
\u201cI\u2019ve wanted to be a vet since I was two,\u201d she said. \u201cI did complete some of my college education, and then I was actually advised to stop because I just couldn\u2019t manage it.<\/p>\n
\u201cI study at home, but realistically I know it\u2019s not going to take me very far.\u201d<\/p>\n
\u201cIt\u2019s pretty much destroyed my life. I can\u2019t really do anything anymore\u2026\u201d<\/p>\n
But her biggest fear is that her health will deteriorate further before she gets the help she believes she needs.<\/p>\n
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.<\/p>\n
\u201cI have the same sort of breakdown with my mum all the time, saying, \u2018It\u2019s going to kill me, this is going to be the end of me\u2019,\u201d she said.<\/p>\n
\u201cI\u2019ve got a 14-year-old brother. I don\u2019t want to leave him behind. He\u2019s very close to me.<\/p>\n
\u201cI\u2019m just afraid this is going to kill me because of how ill it does make me.<\/p>\n
Ella still dreams of being a vet<\/p>\n
\u201cI just feel like I\u2019m being passed around and no one\u2019s taking responsibility.<\/p>\n
\u201cI don\u2019t really know what else to do.\u201d<\/p>\n
A spokesman for East Kent Hospitals said: \u201cWe are sorry to hear of the concerns that have been raised.<\/p>\n
\u201cWe recognise that living with complex health conditions can be very challenging for patients and their families.<\/p>\n
\u201cOur team work closely with patients and their loved ones to discuss concerns, explain treatment plans and consider advice from relevant specialist teams.<\/p>\n
\u201cElla was discharged with a support plan in place to support her ongoing needs once she returned home.<\/p>\n
\u201cWe are committed to ensuring patients feel listened to, respected and involved in decisions about their care.<\/p>\n
\u201cAny concerns about a patient\u2019s experience are taken seriously and can be raised through our Patient Advice and Liaison Service so they can be reviewed appropriately.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"A young woman whose debilitating stomach condition causes her to vomit up to 100 times a day says…\n","protected":false},"author":2,"featured_media":766031,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[1345,59,102,2759,192,191,194,56,54,55],"class_list":["post-766030","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-exclusive","tag-gb","tag-health","tag-herne-bay","tag-human-interest","tag-kent","tag-syndicate","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/766030","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=766030"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/766030\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/766031"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=766030"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=766030"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=766030"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}