'I thought I was dying - then I was diagnosed with a lifelong condition'

Somerset girl Scarlett Luxe experienced a dramatic change in her health while preparing for her GCSEs at just 14 years old. Previously an energetic child who attended dance classes most evenings, Scarlett suddenly found herself drained of energy and constantly needing to sleep.

Now 29, Scarlett recalls the troubling symptoms: "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."

After undergoing a series of tests, Scarlett was diagnosed with Crohn's disease at the age of 15 a revelation that left her bewildered. "As I was so young, I didn't understand at all," said Scarlett. "I had never heard of the condition, what to expect or what could happen."

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The diagnosis was daunting for Scarlett, who feared her life would never be the same. "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.", reports Gloucestershire Live.

In the UK, over half a million individuals are living with Crohn's Disease and Ulcerative Colitis, which are the two primary types of Inflammatory Bowel Disease (IBD).

Crohn's disease triggers inflammation throughout the digestive system, potentially affecting areas from the mouth to the bottom. In contrast, Colitis specifically targets the colon, or the last part of the gut, with inflammation and ulcers.

These conditions are chronic; there's no cure but a range of treatments, including medication and surgery, are available. Early diagnosis is crucial as delays can exacerbate the situation.

Scarlett not her real name, which is Sarah took time to adjust to her "new normal" after being diagnosed with an incurable illness. She now collaborates with Crohn's and Colitis UK to increase awareness of Inflammatory Bowel Disease (IBD).

Initially, she and her family had to familiarise themselves with Crohn's and its impact on her life.

"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."

Pursuing a career in acting and modelling with a focus on 1940s and 50s fashion, she has adopted the vintage persona Scarlett Luxe, though her actual 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 heads to the hospital for an infusion treatment, she always dons red lipstick and an empowering outfit. "I want to make sure I am feeling good and strong to take on my Crohn's," she affirms.

However, Scarlett emphasises that just because she looks "fine" on the outside doesn't mean everything's alright on the inside.

"You can't ever really plan for how and when you'll have a flare," she admits. "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 actively involved in raising awareness of bowel disease, participating in a myth-busting campaign for Crohn's and Colitis UK in recognition of World IBD Day on May 19th. She reveals that one of the most common misconceptions people who don't fully understand her condition tell her is that her illness would disappear if only she altered her diet.

"It infuriates me! " Scarlett declares. "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 reality, there is no cure for Crohn's or Colitis. The food you consume may influence your symptoms, but it varies from person to person.

There isn't a "one-size-fits-all" dietary advice, and maintaining a healthy, balanced diet is the optimal way to receive all the nutrients you require.

At present, Scarlett's Crohn's isn't drastically affecting her daily life, as her medication is largely keeping her condition in check. "I absolutely frequently experience abdominal pain and having to use the bathroom a bit more often, but it is manageable," she admits. "It's become my normal."

Scarlett occasionally finds herself on the receiving end of uninformed and unsolicited advice and opinions from individuals when they discover she is undergoing 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 been living with Crohn's for half of her life now, but she vividly remembers how overwhelming her initial diagnosis was. By sharing her experiences, she hopes to provide comfort to anyone newly diagnosed with a lifelong condition, assuring them that life doesn't have to come to a halt.

"Your dreams don't have to end," she exclaims, "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 anyone in need of further information regarding Crohn's and Colitis, they should pay a visit to crohnsandcolitis.org.uk.

World IBD Day is set to be marked on Sunday, May 19.