By Nathalie Bonney @nathaliebonney
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Videographer / director: Tom Kelly
Producer: Nathalie Bonney, Ruby Coote
Editor: Beth Angus
Charlotte Twinley, from Arundel, Sussex suffered such severe pain from her body’s inability to digest food that she had to resort to a liquid-only diet of meal replacement milkshakes for a whole year.
In her teen years Charlotte was diagnosed with Ehlers Danlos Syndrome (or EDS), a connective tissue disorder, which in Charlotte’s case affected her joints and also her gastroparesis in her digestive system.
To make matters worse, because of the discomfort associated with eating, Charlotte started to reduce her food intake resulting in weight loss and an eating disorder. It’s only now, after receiving care for her mental health and the ostomy surgery that Charlotte feels happy with both her physical and mental health – and proud of the small pouch that has enabled her to eat again.
The 21-year-old told Barcroft TV: “Now, after especially not having eating for over a year, I absolutely love food again.
“I took food for granted back then. I don’t think I would take it for granted anymore.
“With food I have got a happy relationship with it finally and my body again, I was a bit worried that I would start gaining weight that it would trigger me back but if anything it has done the opposite, it has made me love and appreciate my body.
“I used to see like, oh that could change, that could change, this could be smaller, that could be larger, that could change and now I just see me as I am and there is nothing wrong with it, there is nothing wrong with me. Nothing needs to change.”
As a child, Charlotte had a healthy appetite; pasta was a favourite eaten on a near daily basis and most birthdays she would celebrate by blowing out the candles on a chocolate cake.
“When I was younger I’d eat all the time. I would have a breakfast space, a dinner space, a pudding space.
“And I used to have pasta every single day.
“From around the age of 10, I started getting mild stomach symptoms but nothing too disastrous. I just got occasional stomach pains.
“I started to get very competitive in sports and I threw myself into it. And I always got hurt no matter what sport I was playing. If I was running, I was playing hockey around or any sport I was always getting hurt.”
Gradually Charlotte had to reduce her sporting activities until age 15 doctors finally gave her a diagnosis: Ehlers Danlos Syndrome.
“The doctor suggested I try lots of different diets. I have probably eaten every single type of diet I can imagine. The ones that work best for me are cutting out gluten and dairy which isn’t always easy one but whenever I eat these I do get extreme pain and I am ill for about two-three days.
“I have tried lots and lots of different medications and lots of laxatives and every year I just have to keep upping my medication.”
The effect of taking laxatives crushed Charlotte’s confidence and over time she withdrew more and more from social situations.
She remembers: “It was quite embarrassing and a taboo kind of thing to talk about. I was ashamed to talk about to my friends because it’s embarrassing really. No one else had these problems, no one else especially girls really talked about it so I felt quite alone and I kind of became quite withdrawn with my friends. I became a lot more shy than I used to be.”
Without realising it, Charlotte developed an unhealthy pattern of restricting her food intake, which made her gastroparesis worse and then made her lose even more weight.
She said: “I remember the thing that maybe felt quite good was when I lost that weight unintentionally but it made me feel quite proud in a way. And I soon started restricting what I was eating, which made my digestive issues worse and eventually spiralled quite quickly.
“And then my mind just got completely distorted and I was beyond skinny. I was a skeleton. But my mind didn’t see that.”
While family and friends worried about Charlotte’s dramatic weight loss, she was oblivious to the strain she was putting on her body. It was only when doctors demand that she be hospitalised Charlotte acknowledged her eating disorder. Thankfully for her she was able to stay at home instead. But she had to stop going to school and be closely monitored by her parents.
Charlotte said: “I was diagnosed with anorexia and I was also given anti depressants to have as well.
“At home my parents taught me how to have a healthy relationship with food. And they taught me how to cook. They just really looked after me to the max.”
Mum Sarah Twinley remembers the gradual shift in her daughter’s health.
She said: “Over a few months physically she got all her weight back but it took a long while for her inner self to actually accept that she needed to move forward.”
In spite of the progress she had made, in 2017 Charlotte faced another challenge. This time she wanted to eat but her body was making it almost impossible to do so.
“I bloated so much, sometimes I looked pregnant and I had to have maternity jeans.
“It was just literally weighing me down in a way and I just wanted to curl up in the sofa and do nothing feels horrible my body just gave up and just refused to digest any food at all."
Charlotte suggested she start drinking the nutritional supplement drinks she had first tried during her eating disorder, to ensure she didn’t start losing weight again.
“I didn’t really want to get back to that kind of a stage and I knew that I needed to have something. I would have 4-6 nutritional drinks a day."
After five months on the liquid diet Charlotte says she became “quite desperate for a solution,” coming to the astonishing decision that she wanted an ostomy bag fitted.
She said: “I had my surgery in June and I remember, I was actually terrified of eating again, it was scary, I hadn’t eaten for over a year, I had no idea what it would be like. First thing I tried was a vanilla pudding, it was weird to hold a spoon again! It tasted so nice, it was still sweet but it was another flavour and it wasn’t liquid.”
It’s been nearly six months since Charlotte had the surgery and she hasn’t looked back. Finally eating out again with her boyfriend, going to the beach with her stoma bag on display and proudly posting pictures of it online.
“It didn’t take me too long to post a picture of me with my stoma bag mainly because I had followed other people [on social media] and I just saw their confidence and I thought that I could post it.
“After I posted pictures on Instagram I started gaining confidence, more confidence than I had done for the last six years which is weird with an ostomy bag but my confidence just kind of sky rocketed and I am really happy with it.
“I look in the mirror and I don’t cry anymore. It’s ironic how a bag of poo attached to my stomach could change my whole perspective on how I feel about myself!”