‘My rare condition means I can only have tea and biscuits’

Leah Smith, 29, was forced to medically retire as an NHS A&E receptionist

A young woman diagnosed with a rare condition is only able to consume tea and biscuits. Whenever Leah Smith, 29, ate anything, it would result in severe bloating and swelling, causing her abdomen to resemble a pregnancy bump. She described being “violently sick” and vomiting undigested food that had remained in her stomach days later, leading her to lose 6st in 10 weeks at her worst.

Leah endured her symptoms for a year before receiving a diagnosis of gastroparesis (stomach paralysis) — a condition where the nerves responsible for signalling her stomach to empty became paralysed, leaving her unable to pass food into her intestines. Her condition is so severe that she has since had a Hickman line fitted to her chest, through which she receives her nutritional feed.

She must wear the device for 12 hours a day, five days a week. Leah was compelled to take medical retirement from her role as an NHS A&E receptionist and has been advised that tea and biscuits are the only things her body can now tolerate. She has also revealed that she can no longer recall the taste of food, yet still “loves” to cook.

Leah, from Benfleet, Essex, said: “The only things I can really manage are tea, coffee with lactose-free milk and occasionally the cream from the middle of a custard cream biscuit. To me it isn’t strange not eating anymore, as I know the complications that come with it – but in fact I actually enjoy cooking.

“I don’t actually miss eating my favourite foods as I’ve actually lost the memory of the flavour of them. My life now revolves around my TPN connection and disconnection times.

“I was put on the machine because doctors told me that I was starving to death. I would say it affected my life at the beginning, as friends didn’t really know what I would be comfortable with. But I still go out to family meals, just because I don’t eat doesn’t mean I can’t get the socialisation from it.”

Leah explained that she has suffered from digestive problems since her teenage years, but her condition gradually deteriorated until around June 2023, when she suddenly found herself completely unable to eat.

She said: “I realised my stomach seemed to hold onto food for about three days before I’d be violently sick. My digestive system just wasn’t moving food through properly.”

Leah also began shedding weight at an alarming rate, prompting her to visit her GP in early July 2023. She underwent blood tests, an endoscopy, CT scan, capsule camera and ultrasound, yet doctors were unable to pinpoint the cause of her symptoms. Leah also attempted to modify her diet in a bid to ease the pain.

She said: “Weirdly, the only thing I could tolerate for a while was ready salted Pringles. I basically lived off them for months.”

As her health continued to deteriorate, Leah was repeatedly admitted to hospital suffering from severe malnutrition and starvation ketosis.

She said: “I lost around 6st in about 10 weeks, but because I was still technically within a healthy BMI range, I often felt like people didn’t understand how seriously ill I was.”

She also claims she was told her symptoms were “psychological or linked to my autism”, which she says has left her sometimes to struggle to “trust herself and symptoms”. Leah underwent a succession of increasingly complex nutritional interventions as medical professionals searched for answers.

Initially she was fed through a nasogastric (NG) tube, which passes through the nose into the stomach, before subsequently receiving a nasojejunal (NJ) tube, which feeds directly into the small bowel. A turning point finally arrived when Leah paid privately to consult a gastroenterologist in August 2023.

She said: “He immediately suspected gastroparesis linked to my Ehlers-Danlos syndrome and arranged a gastric emptying study.”

Gastroparesis, meaning “stomach paralysis,” occurs when the nerves that control stomach emptying fail to function properly, causing food to move too slowly through the digestive tract. It affects just 14 in every 100,000 people in the UK, according to Guts UK, the national charity for the digestive system. A gastric-emptying study confirmed that Leah’s stomach was barely emptying at all.

She said: “After three-and-a-half hours, I still had full stomach contents sitting there undigested when it should have emptied much earlier.”

Leah was subsequently referred to a specialist intestinal failure team, before being admitted to hospital in November 2024 to commence Total Parenteral Nutrition (TPN). A method of delivering complete nutrition directly into a person’s bloodstream, in her case via a Hickman line, means she now receives daily nourishment straight into her bloodstream through a tube leading into her chest, powered by a device called a Micrel pump, which she carries in a blackout rucksack.

According to Guts UK, there is no cure for gastroparesis. Specialists at Guts UK state that Leah’s experience of TPN feeding is exceptionally uncommon due to the high risk of complications, including infection. Now, two years on, Leah says that living with gastroparesis continues to impact every aspect of her daily life.

She said: “Simple things like hoovering, walking my dog or going out with friends completely wipe me out. I wish people understood how serious and life-changing digestive conditions can be.”

According to a YouGov poll, commissioned by the charity Guts UK, 28% of adults who have experienced digestive symptoms have felt embarrassed by them.