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Personal stories

4 February 2024

To mark Feeding Tube Awareness Week (4th-10th February) young adult mito patient Danielle tells us how, after years of eating problems and misdiagnoses, the use of a feeding tube has changed her life.

A lady standing next to a table with feeding tube apparatus on

Two years ago, 35-year-old Danielle was finally diagnosed with mitochondrial disease. For 25 years she suffered all kinds of eating problems and endured a raft of misdiagnoses from her doctors, but 10 years ago she was fitted with a feeding tube.

Her medical history is, to put it bluntly, challenging. For years she was described as a ‘problem patient’, with no specific cause found for her many issues. When she was born she spent several days in an incubator, and her feeding problems started right away. She struggled to feed, couldn’t keep food down, and her mum quickly took her back to hospital where doctors fitted her with an NG (naso-gastric i.e. through the nose) tube.

Danielle wore the tube intermittently until she hit school age. “The tube made me gain weight,” she reflects, “but I still had other health problems which I feel like maybe it disguised. I stopped wearing it as soon as I went to school – I think my mum was worried that I might get picked on. Also I remember in the hospital once being held down by four or five people to get the tube in because I must’ve not wanted it. That might be another reason why she didn’t want me to keep it.”

Between the ages of five and 16, Danielle took a growth hormone which helped her gain height but not weight. And what followed during her adolescence was a cycle of dehydration and admission to hospital for fluids before being discharged once she’d perked up. “That happened regularly, right into my twenties,” she says.

A recurring misdiagnosis

Several doctors she saw suspected Danielle of having anorexia nervosa, to the extent that she was admitted once to a young people’s unit and twice to a specialist eating disorder facility. “It probably didn’t help that I was only eating mouse portions,” she recalls. “As I got older I didn’t eat a big variety but I liked toast, crisps and noodles – basically beige food!”

“I wonder now if it was a sensory thing. I would go through fads, find a ‘safe’ food I really liked and stick to it. I remember being 16 and living off chips and coleslaw from the local takeaway for a year. I still go there today,” she chuckles, “it’s just down the road! I didn’t think about calories, I never felt hungry, and I could go for days without eating. I was probably really nutritionally deficient.”

Danielle finally got some answers when she was diagnosed with gastroparesis – a condition where food passes through the stomach more slowly than it should. “Food would go in and just sit there,” she explains. “I guess that’s why I was never hungry. The doctors wanted to try an NG tube, but I didn’t want one because of the trauma I had when I was younger. Eventually I agreed to let them try, but it was horrific. They couldn’t get it in, there was blood everywhere and they gave up in the end.”

But she became very unwell in 2014. She was admitted to hospital again, and this time her doctor said she couldn’t leave until she’d gained some weight. “Finally I agreed to have a tube,” she says. “This time it went in fine but I didn’t like the feel of it down my throat. I didn’t like the idea of people looking at me either. I got picked on at school, and this was just another thing to draw attention to me.”

Danielle persevered with the tube for three days before asking the nurse to remove it. But without the tube, she had to drink supplements every day, four times a day. She didn’t like the taste and they made her feel bloated and uncomfortable. After three weeks, she’d gained some weight and was discharged, but when she saw her gastro doctor a few days later, she told him how much she was struggling with the drinks. A PEG (percutaneous endoscopic gastronomy i.e. through the stomach) tube had been suggested several times before, as long ago as when Danielle was 18, but had always been ruled out on the assumption that she had an eating disorder. This time her doctor insisted.

Finally a treatment that worked

“I was scared, but I said yes,” she recalls. “So they sedated me and put the tube in. I remember being in the most horrific pain. Unsurprisingly, I suppose, because they literally go right through your stomach.” Danielle stayed in hospital for a couple of days and was shown how to administer her own feed. “I did it overnight. And then I gained over six kilos in three months, thanks in part to the feeding tube. I was eating too. Not loads, but a bit more than usual. And physically I felt ok.”

She had the PEG tube for just over a year before having it changed for a button, but that too was a disturbing experience for Danielle. “They sedated me because I was scared, but I could still feel them yanking and tugging at it.” She winces. “But it’s much better having a button, although I still hate getting it changed, which happens twice a year.”

Despite this, having the feeding tube has changed Danielle’s life. “It’s the best thing ever,” she states firmly. “It was such a relief when they gave it to me – finally I was getting the right treatment. If they’d given me one back when I was 18 I could’ve avoided so much unnecessary trauma.”

It’s also meant her weight has stopped being the main focus for her doctors. “I hate my weight being such a big deal to people,” she explains. “I feel like my whole life’s been about my weight and I don’t want it to be.”

So how does the tube impact on Danielle’s daily life? “I use it every night, but I’m allowed one night off a week,” she says. “Sometimes it’s hard to set up, especially if I’m feeling tired, but it’s worth doing. I put it on last thing at night, and because I’m getting up to 1000ml through me, I often wake up early bursting for the loo! And sometimes the machine bleeps in the night and wakes me up.”

“But it’s really helpful,” she continues. “I haven’t had as many hospital admissions since having the tube; I guess it’s keeping me hydrated and keeping my weight better too. It takes the pressure off – I don’t have to think so much about eating because I know I’m going to get my nutrients at night.”

It’s made a massive difference to my life, both physically and mentally... If I hadn’t had it, I might have died.”

And Danielle’s definitely an advocate of a feeding tube these days, particularly for those who don’t necessarily want other people to know. “If anyone is struggling to eat or gain weight or stay well, it will help you out, and if it’s at night it’s great. I don’t normally talk about mine. But I would recommend having one because I think it’s so good to not feel that pressure of having to eat.”

She’s got so used to it that occasionally she even forgets it’s there. “Sometimes I accidentally bash it,” she continues, “or forget it’s attached to me. I’ll put it down somewhere then get up and try and walk away! One of my biggest fears is that it falls out because I hate getting it put back in. I just can’t get over the idea that I’ve got a hole going into my stomach!”

“But it’s made a massive difference to my life, both physically and mentally,” she admits. “If I hadn’t had it, I might have died. I probably would’ve given up on the supplement drinks. I’d have just been going through the same cycle of ending up in hospital, gaining weight and coming back out again. That probably would’ve gone on forever.”

Feeding Tube Awareness Week aims to highlight the daily impact and promote the benefits of a feeding tube. Since Danielle got hers, she’s been in hospital a lot less than before. “People ask me how long I’ll have it and I say probably forever,” she states. “It’s not been without its trauma but it’s definitely been worth it in the long run.”

It may be a simple piece of medical equipment, but it’s also a lifesaving one.

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