'I thought I was dying at first' Teen felt sick and needed the toilet all the time before diagnosis

Scarlett Luxe was just 14 and studying for her GCSEs when she realised something wasn’t right with her body. She had been very active as young child, taking dance classes most evenings after school, but suddenly all that energy drained away, and all she wanted to do was sleep.

Now aged 29, Scarlett says: “I would have to come home from school and have a nap which just wasn't like me. I also felt sick a lot of the time, putting me off food. I began to notice I was using the bathroom more frequently. Then I started seeing blood in my poo and that was when I panicked and told my mum. I thought I was dying! We booked in to see the GP to figure out what was going on.”

A series of tests followed, and when Scarlett was 15, doctors told her she had Crohn’s – a type of Inflammatory Bowel Disease (IBD). “As I was so young, I didn't understand at all,” Scarlett, from Somerset said. “I had never heard of the condition, what to expect or what could happen.

“It was so overwhelming and I assumed that it meant that ‘normal’ life was over. All I could think of was the worst-case scenarios such as having to have surgery or having a stoma fitted when, in reality, those things could save my life. But at a young age, that was terrifying.”

There are more than half a million people in the UK living with Crohn’s Disease and Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease.

Crohn’s causes inflammation in your digestive system – so that can happen anywhere from your mouth to your bottom. Meanwhile, in Colitis, the inflammation and ulcers are only in your colon, which is the last bit of your gut.

Crohn’s and Colitis are lifelong conditions so there’s no cure, but there are lots of treatments available, including medicines and surgery. The key thing is not having to wait too long for a diagnosis, because the longer it takes to figure out what’s going on, the worse things can get.

Being told that you have an incurable condition is a lot to take on board, so it took Scarlett – whose real name is Sarah – a while to get used to her “new normal”. She now works with the charity Crohn’s & Colitis UK to raise awareness of Inflammatory Bowel Disease, but in the beginning, she and her family had to learn all about Crohn’s and how flare-ups would affect her.

“There may be similarities in experiences but everyone has different triggers, different symptoms and experiences. For me, living with Crohn's Disease is unpredictable. I can have a stretch of time where I feel relatively normal and can go about day to day life as I would like. But there will be times where the pain is unbearable, and I can't leave the bathroom or even the house.”

Scarlett now works as an actor and model specialising in 1940s and 50s fashion, using her vintage persona Scarlett Luxe - her real name is Sarah.

“I have a huge passion for old Hollywood glamour and my style is highly inspired by this. I have accepted that my Crohn's is part of me and I now focus on what I can do to make sure I feel good in mind, body and spirit. That could be anything from making sure I am eating well and staying hydrated, to doing things that make me feel good when I’m struggling with my symptoms.”

Every time Scarlett visits the hospital for an infusion treatment, she makes a point of dressing up in red lipstick and an empowering outfit. “I want to make sure I am feeling good and strong to take on my Crohn’s,” she says.

But, Scarlett says, she is proof that looking “fine” on the outside doesn’t mean everything is OK on the inside.

“You can’t ever really plan for how and when you’ll have a flare,” she says. “It can just come completely out of the blue and catch you off-guard. You really do have to take one day at a time.”

Scarlett is helping to raise awareness of bowel disease taking part in a myth-busting campaign for Crohn’s & Colitis UK to mark World IBD Day on May 19th. She says one of the things people who don’t really understand her condition will say to her most, is that if she ate differently, it would just go away.

“It infuriates me!” Scarlett exclaims. “If it was as simple as changing your diet then so many of us would be living well, but it’s not that simple.”

In fact, there is no cure for Crohn’s or Colitis. What you eat might affect your symptoms, but it is different for everybody. There is no “one-size-fits-all” advice on diet, and eating a healthy, balanced diet is the best way to get all the nutrients you need.

For now, Scarlett’s Crohn’s isn’t having a massive impact on her day to day life, because the medication she is on is keeping her condition under control for the most part. “I absolutely frequently experience abdominal pain and having to use the bathroom a bit more often, but it is manageable,” she says. “It's become my normal.”

Scarlett sometimes finds herself on the receiving end of ill-informed and unsolicited advice and opinions from people when they find out she is on long-term treatment.

“My medication has stopped me from having to have bowel surgery at least two or three times during my time with the condition,” she says.

“It has literally saved my life! I will always trust the professionals who have studied and continue to study over someone on the internet or social media I don't even know!”

Scarlett has now been living with Crohn’s for half her life, but she hasn’t forgotten just how overwhelming her diagnosis was at the beginning. She hopes that by sharing her experiences she can help to reassure anyone who has just found out they have a life-long condition that life doesn’t have to stop.

“Your dreams don’t have to end,” she says. “If anything, it can drive you more to aim high and live the best life you can! I have achieved things I never thought possible – from modelling to going to university, and even skydiving! All whilst having Crohn’s. Anything truly is possible.”

For more information about Crohn’s and Colitis, visit crohnsandcolitis.org.uk

World IBD Day will be observed on Sunday, May 19.