The Nil by Mouth Foodie

Image credit: Amy Maidment

Despite having a digestive system that won’t let her eat, Loretta Harmes hasn’t lost her appetite for cooking. And since sharing her story and culinary talent with the world, she’s been relishing all life has to offer.

As she talks about her wheelchair – a long-resisted development she’s recently nestled into – Loretta Harmes exudes her signature, glass-half-full attitude: “It’s giving me freedom and independence, rather than taking it away.”

Speaking from her home in Poole, a coastal town in Dorset, southern England, the 30-year-old sprawls on her bed while pondering the next question: What does it feel like to be fed through your heart?

“I still now – even after being on total parenteral nutrition (TPN) since 2015 – sometimes think all of a sudden, oh, wow, I’m actually fed through there!” she marvels. “It just hits you sometimes how crazy that is in itself.”

Also known as intravenous or IV nutrition feeding, TPN is a method of feeding liquid nutrients into the body through the veins. Loretta’s are delivered through a central venous catheter, called a Hickman line, over 18 hours each day.

“It comes with a mix of emotions,’ says Loretta, who hasn’t eaten orally for almost eight years. ‘It’s giving back a lot more than it has taken away and I don’t have severe pain now, because my food is going through my bloodstream. So it’s a good thing, in that respect.”

Loretta has Ehlers-Danlos syndrome (EDS), a genetic condition causing damage to the connective tissue in the wall of her intestines. She also has gastroparesis, which means her stomach is partially paralysed and can’t properly empty itself.

These diagnoses were hard won for Loretta – only coming after years of agonising pain, misdiagnosis and doctors not believing her. She was 12 when her stomach and digestive problems started. At 14 she was diagnosed with irritable bowel syndrome and at 15, disordered eating and digestive issues followed.

In the background of all of this, whenever she could manage it, Loretta took comfort in the very thing that caused her anguish. Food.

“I’ve had a passion for cooking since I was a little girl,” she says. “I just love the hands-on nature of creating things and the freedom it can give you. When I’ve got ingredients I can do whatever I want with, that really gets my creative juices going.”

Image credit: Amy Maidment

Loretta happily divulges her most recent triumph – a convincingly crisp hoisin ‘duck’ made from mushrooms. “I couldn’t believe it actually worked – and my mum couldn’t really tell the difference!” she says.

After years of feeding her family and winning school cooking competitions, Loretta was midway through a top culinary course in London when, at 19, her health took a dramatic dive and she could barely eat or empty her bowels.

One doctor insisted Loretta’s weight loss meant the eating disorder she had at 15 must have returned. She spent more than two years in eating disorder units where she was forced to eat and driven to pain and frustration-induced outbursts that saw her sectioned under the Mental Health Act for 18 months.

Loretta had lost all hope and was feeling suicidal when she saw a psychiatrist specialising in gut-brain connection. That psychiatrist told Loretta they’d heard of patients with similar symptoms also not being believed by their medical teams. Emboldened by this discovery, Loretta went to the UK’s top Ehlers-Danlos syndrome (EDS) specialist who, in 2015, delivered her long- awaited diagnosis.

”I later got tests from my specialist bowel hospital which explained why I was losing weight, in pain and had problems eating,” Loretta recalls. “After a lengthy hospital stay of trialling ways to eat, I was put on TPN.”

At 23 years old, Loretta’s last meal of roast potatoes – cooked to crunchy-and-fluffy perfection – took part in those tests and trials. Does she miss eating orally? Yes, but she feels fortunate not to get cravings for food.

“I was in so much severe agony for years,” says Loretta. “Food, for me, just equalled pain. It wasn’t pleasant. It just filled me with dread.”

Her love of cooking, however, never wavered. And when a BBC interview shared this unlikely chef’s story in 2021, the world came to know her as The Nil By Mouth Foodie. “I can’t believe how things escalated from that article,” she says, only days away from launching her business, Nil By Mouth & Co, a “slow fashion” brand featuring tees and tanks printed with the words: ‘Your current situation isn’t your final destination.’

Loretta is staunchly philosophical about her own health challenges, but struggles to reconcile with the tragic loss of her younger sister, Abbie.

In 2019, Loretta’s mother and Abbie visited Loretta in hospital where she was recovering from sepsis – a common complication for those who feed through TPN. Devastatingly, Abbie died in a car crash on the way home.

“I don’t think I’ll ever feel peace with that,” says Loretta. “It’s not something that I’ve really dealt with or processed. Because so much has happened in my life, the way that I’ve survived is by dissociating or blocking things. But something that keeps me going forward is the fact that I need to live for both of us now. That’s given me a determination to do as much as I can and try and help as many people as I can. And make the most of being here still.”

Since the BBC article skyrocketed her profile, Loretta has done a number of pop-up events where she’s taken over restaurant and cafe spaces and fed large parties of people. Last August she made ‘super salad boxes’ for a charity fun day her family held in memory of Abbie, which raised money for Air Ambulance Kent Surrey Sussex.

“We owe them so much for allowing us to say goodbye to her properly,” says Loretta, who filled those boxes with a combination of red-pesto mayo potatoes, roasted balsamic vegetables and tahini dressed lettuce with seasoned crunchy chickpeas. “I went for salads because a lot of people came – and I didn’t want to be on a stool cooking all day.”

Loretta’s ‘whizzy’ stool – like her wheelchair – is one of her many workarounds for getting about with greater ease. She uses tubie clips to keep her line secure, a portable car fridge to keep her formula cold, and a backpack to carry her feed bag wherever she goes.

“It’s actually a nappy bag,” she says. “They’re amazing for feeding stuff because they’ve got so many compartments. You can put all of your medications and little nifty bits in there that you need – and they tend to be waterproof. I also found a wheelie trolly that I can put my bag on. So if it’s too heavy on my back, I can put my bag on there and go about my business.”

In addition to her Hickman line for TPN, Loretta now has a jejunal tube. Or as she calls it, ‘Jeff’. In an especially cunning fix, Loretta has found a way to take Jeff into a jacuzzi – usually a big no-no for anyone with a G or J-tube. She manages this by squeezing Jeff into a ‘swimming dressing’ designed for her Hickman line. “For those who can’t get that type of dressing, stoma bags would 100 per cent do the job,” she says.

Image credit: Amy Maidment

When Loretta hits an obstacle, she finds a way around it – and says it tends to be mindsets, rather than medical devices, that hold people back.

“Doctors don’t always make it sound as though you can live a fulfilled, normal life,” she says. “They can be very medically oriented because they’re not living it – they’re only seeing tube-feeding in a hospital environment. So it took me some time to try and rewire that belief. You just need to be open-minded and find your own hacks to suit your situation.”

Oral eating will never be an option for Loretta – but bowel feeding could be. Back when she started TPN, she also tried feeding through a nasojejunal (NJ) tube. This didn’t last long, ‘because my bowel was in such a bad state at that point’. She tried more NJs for getting medication down, but they all failed.

“I’m fully accepting of TPN now but at the same time, there’s always anxiety and worry because it’s a very extreme way of feeding with severe complications,” says Loretta. “It only takes a small speck of dust in the line to cause sepsis – which I’ve had nine times. When sepsis happens you can’t feed through your line because it’s infected, and you can’t put another line in because your blood’s contaminated. You have to starve that bacteria – which means starving me.”

During one of those nine bouts of sepsis, Loretta lived on nothing more than a saline drip for 16 days. “If you happen to get in one of those situations, you feel out of control, because you can’t do anything,” she says.

“Last year I pleaded with my consultant to give an NJ just one more try, because my bowel has settled and rested. To my surprise – and everyone else’s – I got on OK with taking medications through it, to the point where we could change to a jejunostomy (J) tube. Whether or not I come off of TPN completely, it will still be good to be able to get whatever I can get down the J-tube. That’s an achievement in itself.”

The standard elemental and semi- elemental formulas designed for bowel feeding aren’t sitting well with Loretta, so she’s looking into making her own. Whenever she can find time, that is.

Currently developing recipes and doing food styling for brands, Loretta has been approached by several agencies eager to help her publish a memoir. “Something on TV could be happening as well,” she hints. “There are many eggs in the basket.”

They say you should never trust a chef who doesn’t eat their own food, but Loretta has found that once taste leaves the building, other senses come to the party.

“My sense of smell has heightened so much since not eating – which I guess is my body’s natural response of trying to balance things out. I always think about a recipe before I cook it and while I’m cooking I kind of just know how to balance the flavours. It’s like someone’s in my ear. I get other people to taste my food and most of the time I’m not far off. Things might just need a bit of tweaking.”

When she’s not cooking, Loretta goes to restaurants and bars with her family, partner and friends. “If we go out I’ll always ask, is there a pool table? It’s about finding things I can enjoy when food is involved,” she says.

Loretta lives with housemate Amy Maidment, a photographer who’s captured much of Loretta’s work since she left her family home in Sussex.

“I moved here with just a food blog and when the article came out, it gave me an opportunity to create more of a life and share my experiences as well, which was really important for me because I was unheard for so long,” says Loretta. “I want to keep sharing and help others with what I’ve learnt over my years of being tube-fed.”

What message does she have for people who are new to this space?

“You can still have a really good quality of life despite the tubes, despite medical devices, despite the diagnosis. They don’t define you. It’s a really hard adjustment and it will take time to accept, but know that it does get easier. This thing is giving you your life back. It’s special and you just need to get adventurous in how you go about things.”