‘I watched my friend Jessica die from a bowel complaint... now I’m determined to dispel taboos about this condition’
Belfast teenager Charlotte Lewsley was told she wouldn't live to see her 16th birthday after being diagnosed with Inflammatory Bowel Disease. Now 19 and a model, she's launched a blog to break the silence surrounding the illness
A Belfast teenager who almost died of Inflammatory Bowel Disease says she decided to blog her journey to break down embarrassment about bowel problems and help others feel less alone in their diagnosis.
At her lowest ebb, Charlotte Lewsley (19) weighed just five stone and her parents, Christine and Charlie, were told to prepare for her death as her organs failed.
Four years later, the alternative model is thriving, with her condition largely under control, working three jobs and loving life.
She is a bastion of hope for those living with bowel conditions and their families, posting her advice and experiences on her hugely successful blog, Tattoos and Toilet Paper.
"I was diagnosed with Inflammatory Bowel Disease when I was 15 years old," says Charlotte. "I had been sick when I was in primary school. I always had a sore stomach and was unwell a lot of the time.
"When I was 12, I went to my GP and they kept saying it was Irritable Bowel Syndrome, or a stomach bug, and I was given antibiotics. When I was 15, it got really bad. I was fainting all the time, lost four stone and was going to the toilet 30 times a day.
"My mum took me to A&E in Craigavon Hospital one day after I fainted. I could barely stand and had to be taken in in a wheelchair. The hospital admitted me and I was there for six weeks.
"The first two or three weeks, I was tested for everything. I had blood tests, X-rays, colonoscopies. I was really terrified. I didn't know what was happening to me, or what it was. I was diagnosed with IBD after three weeks.
"My lowest ebb was when the tablets they had given me stopped working and my organs began to shut down. I weighed five stone and my mum and dad were told to prepare for the worst - that I wasn't going to make it to my 16th birthday. The doctors thought I was going to die.
"I was so frustrated in hospital and just wanted to go home. I spent my days crying and got angry at the nurses. I was so underweight that I couldn't walk, so I was in a wheelchair. The doctors did trial and error with the medication and eventually found something that worked for me and I slowly began to feel better."
Since her near-death experience at 15, Charlotte has been in and out of hospital countless times with her condition. She says she always tries to remain positive and lives a full and active life despite her challenges.
"The condition has had a huge impact on my life," she says. "With regards the social aspect, I have lost friends because of it. When I was first diagnosed, my friends didn't really understand what it was, they kind of gave up, because if you are sore, or sick, you can't leave the house.
"But my closer friends - the ones I'm still friends with now - they understand. If I'm ill, they would come to me if I can't go out. It's the same with dating. My boyfriend, Jordan, is amazing. But other boyfriends didn't really understand and would have maybe got annoyed and frustrated.
"It definitely impacts on day-to-day life. Basically, I don't know how I'm going to be from one day to the next until I wake up in the morning. It feels like you have a flu and it takes over your whole body.
"Some days I can't get out of bed, some days I'm fine. So, it is hard to make plans, because on the day in question you could wake up and be really sore.
"I used to take really bad panic attacks when I left the house. It was just down to a real fear that there wouldn't be a toilet around if I needed one. I remember when I was first diagnosed and I had a really bad panic attack when I was going on a trip to Paris. We had just got on a bus and there was no toilet on there. We had to travel from Belfast all the way to Dublin.
"My whole body started shaking, then I went numb, then I felt like my chest was tightening. With all that going on, I felt like I needed to go to the bathroom and there wasn't a toilet. It was like a vicious circle. It was so horrible."
With Charlotte's blog, Tattoos and Toilet Paper, she says she wants to smash the taboo of talking about bowel issues, help those who are recently diagnosed deal with the new chapter in their lives and also help their family and friends understand what is going on.
"Whenever I was 16 and living with the condition for around a year, I had a girl reach out to me who had just been diagnosed," she says.
"Jessica (Farr) saw that I was very open about my condition on social media. I went to see her in hospital and I sat there and answered her questions.
"I gave her mum my mum's number, so they could talk. We became good friends, we talked constantly and I gave her advice on what to expect and tried to be there for her always. She actually passed away last year, due to the condition, which was heartbreaking.
"I went to see her that first time, because I didn't want her to feel alone in her diagnosis. When I was diagnosed, I didn't know anyone with the condition, I'd never heard of it and it was very much isolating. And I didn't want anyone else to feel like that. That's why I started my blog.
"I called it Tattoos and Toilet Paper because I thought it related most to me. I am covered in tattoos - I have nine - and the toilet paper obviously relates to having a bowel condition.
"I just want to be a voice for people who don't have one and even reach people who don't have the condition, but want to understand it. I want to help people who have just been diagnosed, are scared and need someone to talk to about it.
"I want to spread the message that you can live a full, busy and rewarding life with the condition.
"I am a waitress as my day job. I do kids' parties dressed as the Little Mermaid. I am qualified in special effects make-up and I'm a model. I don't let the condition hold me back.
"I can't say it never gets me down. I was sick at Christmas and all you really want to do during that time is enjoy yourself and it's hard when you're sick in bed and in pain and feeling like the person who's always grumpy and sore.
"But I have a fantastic support group around me. My mum and dad and boyfriend are amazing. My mum is so proud of how far I've come. She's got pictures of my photoshoots all over the house and, when I qualified in special effects, she told me she knew I'd make it and that she knew I wouldn't let the sickness get me down. That really meant a lot to me."
Charlotte says she has come through so much in her life so far that it has made her stronger as a person and prepared for anything life throws at her.
"I have been told before that there is a possibility of having to have a colostomy bag," she says. "It was very nearly the case when I was 15, but they worked to ensure I didn't have to have one. But I have been told it might be a possibility at some point in my life.
"It is not something I find daunting, I most certainly did at the start, but now it doesn't bother me. I've seen so many people with them and read blogs about people with them. They have one and have just moved on with life, they take pictures of it and aren't self-conscious about it at all. It doesn't scare me anymore. I kind of just accept anything that is thrown at me at this stage.
"I have a tattoo on my arm that is dedicated to my condition. It has roses to represent growth. It has the word strength in Greek. It has the purple awareness ribbon for my friend, Jessica, who had Crohn's disease with the dates she was born and passed away around it in Roman numerals.
"And finally it has 'life takes guts' leading towards my hand. I love it."
You can check out Charlotte's blog and keep up to date with her journey at: www.tattoos andtoiletpaper.wordpress.com