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It had been seven years since she’d tasted solid food and she was determined to make the most of it. Her mom made her her favourite meal: lemon-and-herb spiced chicken with roasted potatoes.
Loretta Harmes bit into a perfect potato, savouring the crisp, crunchy outside and the warm fluffy inside.
It was delicious – but it would also be the last time she enjoyed a solid meal. Not a morsel has passed her lips in the six years that have followed. Eating simply isn’t worth it for the 29-year-old from Poole in the UK, who has a chronic disorder called Ehlers-Danlos syndrome.
The condition affects the body’s connective tissue and has damaged the wall of her intestines, preventing food from moving smoothly through her digestive system.
Loretta also has gastroparesis or partial stomach paralysis, a condition where the stomach is unable to empty itself of food normally.
If she eats solid food she’s soon doubled over in agony, searing pains shooting through her stomach. Despite all this, however, food is still her life.
Loretta is a chef and food blogger and it was on her blog, Deadly X Delish, where she shared her experience of her last meal.
“That roast potato in over seven years was heaven, and the after effects were pretty hellish. However I don’t regret it, I knew this was the last time I would eat something normal so we made the most of it!
“My mum, sister and I cooked up the perfect roasties and sat down and ate together. I hadn’t eaten the same as them or held a knife and fork in years so it was a special moment for us.”
She explains she was eating for a “small bowel manometry test [a thick orange tube goes through the nose and into the bowel to check muscle function]. The results explained all the problems I was having. I had gastroparesis – a partially paralysed stomach.”
You may think that being around food would be torture but Loretta loves cooking, even if she can’t so much as taste her own food. Not eating, she says, has heightened her other senses.
She prepares gluten-free, plant-based recipes in her apartment with the assistance of her housemate, photographer Amy Maidment, who tastes and shoots Loretta’s dishes for her blog and Instagram page, @the.nil.by.mouth.foodie, which she started last year during lockdown.
“My misbehaving body and not being able to eat hasn’t stopped my love for cooking,” she says.
“The cooking itself is what I get pleasure from – being in the kitchen is a real creative outlet for me.
“If I am ever worried or anxious, as soon as I get cooking it fades because I’m too busy concentrating on the dish I’m making.”
Loretta has a fridge stacked with clear plastic bags, each filled with 2,5 litres of a yellow fluid. These are her “feedbags,” filled with protein, carbohydrates, minerals and electrolytes, vitamins and other trace elements which are “fed” directly into her.
Known as total parenteral nutrition (TPN), this intravenous feeding method bypasses her digestive system entirely and infuses nutrients directly into her bloodstream.
On very hot days, she says, she sucks on an ice cube but apart from that, she doesn’t drink fluids.
She’s connected to the bag for 18 hours a day, and often has the bag in a rucksack she’s customised so she can go out.
The tube doesn’t hurt unless it’s tugged on, she says, and she can even shower with it attached.
There’s one serious drawback to it: the danger of sepsis. Even the tiniest speck of dust can contaminate the line and cause an infection so severe it can lead to organ failure or even death.
“Still, despite its limitations, TPN has given back more than it’s taken away,” Loretta told the BBC.
Her love of food began at an early age, when she learnt to cook and bake at her grandmother’s side.
“My sister and I’d always fight over who got to lick the cake bowl clean,” she recalls.
The kitchen soon became her favourite place.
“I absolutely loved experimenting and regularly cooked dinner with my mum. Any free time I had I’d either be in the kitchen, watching cooking shows or reading recipe books.”
By the time she was 11 she was cooking dinner for her family every Tuesday – meatballs and a sticky chicken salad were a firm favourite.
When she reached her teens she began experiencing digestive problems, and soon eating became such an ordeal she could barely face it.
She was misdiagnosed as anorexic at the age of 15 and was treated for the eating condition but her stomach pains continued to worsen.
At 19 she was forced to drop out of her studies at one of England’s top culinary schools because her stomach pains had become unbearable, leaving her bedridden for days at a time.
“My digestive problems got super bad. That was the start of the five years from hell. Throughout those years I felt like I was living a bad dream. It was unimaginable.”
READ MORE| I survived anorexia and I hope my story inspires others caught in it too
Loretta's weight plummeted to a terrifying 25kg and the pain was so severe she attempted suicide several times.
She was admitted to an eating disorder unit at a psychiatric hospital and in the 18 months that followed, she was watched like a hawk. She wasn’t allowed to leave the unit’s dining area until she had eaten all of the day’s meals – three main meals and three snacks – even when her attempts to eat would leave her hunched over in agony.
“I told them repeatedly that the only reason I was depressed was because of my bowel and stomach difficulties, but they didn't believe me,” she says.
It was only when she she and her mother, Julie, visited a bowel specialist at St Mark’s Hospital in London that everything started making sense. By age 23, Loretta was diagnosed with Ehlers-Danlos syndrome and stomach paralysis and the relief was immense.
Regaining control of her life was immeasurable, she says.
“The reason I don't go stir-crazy over not being able to eat is because I'm so relieved to be free from the pain after so many years.”
She does admit missing some of her favourite foods, like birthday cake, ice cream and sourdough toast.
But working with food brings her joy. “It’s a creative outlet for me. I’ve learnt to adapt over the years to work through obstacles so there’s no holding me back.”
Sources: deadlyxdelish.com, instagram.com, bbc.com, healthline.com, dailymail.com, ndtv.com
