The online Crohn’s and Colitis community is changing the face of fashion

03 September 2020

Rosie's journey with Crohn’s has not been been an easy one but the online Crohn’s and Colitis community has helped her through it, ever since she took that first step of showing her stoma to the world. Now her awareness raising goes from strength to strength and has been noticed by fashion brand Pretty Little Thing.

I was diagnosed with Crohn’s in 2003 after a year of problems such as pain going to the toilet, stomach cramps, and severe mouth ulcers. I was referred to an oral specialist after a routine dentist appointment and they took a biopsy which led to my diagnosis. I then had a long journey to an ileostomy in 2011 (with a colostomy and prolapsed stoma beforehand) and a proctectomy, known as ‘barbie butt’ surgery, in 2016. I almost lost my life to Crohn’s Disease and have had very severe symptoms, but I’m determined that it will never stop me! Ever.

Over the years, I have been involved in many fundraisers for Crohn’s & Colitis UK; I ran the Bupa 10k, my friends ran a half marathon when I was too unwell to participate myself and another good friend organised fundraising parties for me which were amazing! Although I was fundraising for a charity I cared about, I never shared my story until I started my Instagram in 2018 and it took me seven months to build the courage up to share that I had a stoma.

The community I found online was just unbelievable and the support everyone showed each other was like nothing I had seen before.

Sharing my stoma story

I set up my page, followed Crohn’s & Colitis UK, started to follow some of their followers and slowly built it up from there. I would see people younger than me owning their stoma pictures and think “I’m uploading images where I look like I’m fine” and I felt like it was a lie. Once I posted that first image, I felt like a 13-year-old secret had been lifted off my shoulders. Now I can’t stop shouting it from the rooftop! I found sharing helped others but, more importantly, helped me.

I would say there is now a group of people who I class as friends for life and mostly found on Instagram. We all experience different symptoms, but we come together as one. This illness can sometimes feel debilitating, but we make each other feel strong, confident and, most importantly, not alone. I feel it’s especially important to show a person with Crohn’s or Colitis living a ‘normal life’ because at times, these conditions can make you feel isolated, scared and lifeless. The hard work that the Crohn’s and Colitis community does on social media and through fundraising means a lot to me. We all work hard to get much needed awareness out there, to get brands to recognise that stomas and scars are normal and to spread the message that all bodies really are normal and beautiful!

No one should be ashamed. It’s good to see all our noise is being noticed.

Stomas and scars - on the road to normalisation

An example of our voice being heard came earlier this year. I got the amazing opportunity to work with Pretty Little Thing. I was asked to do a photoshoot in some bikinis that I already wore to show others that they too can wear swimwear and feel good with Crohn’s or Colitis! I spent a day at their head office in Manchester and had my hair and make-up done by the best team. I now even have my own edit and page on their site - THE ROSIE CAMPBELL EDIT! How amazing is that? All this came from sharing a picture on Instagram and asking my amazing community to share and tag Pretty Little Thing. After a few days, we got recognised and I got to do a photoshoot with them. Since then, there have been some other great brands doing the same and it finally feels like stoma bags and scars are on the road to normalisation! 

With any chronic illness there will be highs and lows, but I have lots more highs than I do lows. The first few years after diagnosis were my most turbulent, and I then had some good years and some more bad years through my twenties but, ultimately, I’m having good years instead of just good days, weeks or months.

Many people inspire me and I have to thank everyone who helped me be able to share my story!

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