Pretty quickly I had diagnostic tests and was diagnosed with Ulcerative Colitis. From then on, it was a constant battle to stay well. I tried a few different oral medications but didn’t have much luck to start with, as I kept flaring and ending up in hospital. I was prescribed azathioprine and I stayed on this for a few years, thinking I was “in remission”. Looking back, I was still incredibly unwell. I struggled to keep weight on, I was on the toilet numerous times a day, and I couldn’t eat any wheat, gluten, or milk as this would cause severe stomach pains and bloody diarrhoea.
When the oral drugs weren’t doing enough, I was started on infliximab. Unfortunately this was my worst nightmare because by this point I had severe needle phobia and the infusion required me to have a cannula inserted on each visit, every six weeks. Over time, I needed it sooner and sooner. I was living off fortified drinks to give me the calories I needed as I couldn’t eat much food without the pain becoming more severe, so I was then told I needed to have surgery to form a temporary stoma.
But my body was giving up, and I really had no choice at all. I was re-diagnosed with Crohn’s and had my surgery to form my ileostomy and found it really difficult to come to terms with, especially as I was still experiencing severe stomach pains and having to pass blood and mucus despite having the stoma. This led to another major surgery to remove my large bowel and rectum. I cried the whole way to the theatre and spent days in high dependency recovering. I was 17 with a stoma bag and a stitched-up bottom. I was terrified I wouldn’t ever be loved, and I felt ugly. It was a really difficult time.
I found a community of others with Crohn’s and Colitis on Instagram which I never knew existed back when I had my operation. I was on holiday two years after my surgery and I decided to take a picture of myself with the bag on show. Crohn’s & Colitis UK posted this publicly and it quickly got around 10,000 likes. The support was incredible and made me wonder why I ever used to hide it. I now have a public Instagram account and I use this to raise awareness as well as just be me and enjoy the life that I now have thanks to my stoma surgery. This has also led to me being featured on Bravissimo’s Instagram and magazine. They have been so inclusive.
For my takeover of Behind The Scars I spent the whole weekend vlogging and, again, the response was incredible. I received comments and direct messages from strangers who gave me so much support and positive feedback. The account is incredible, and I hope sharing my story encouraged others to embrace their scars and their disabilities and to love themselves no matter what they’ve been through.
I missed a lot of school due to my Crohn’s, but I passed my GCSEs with better results than I ever could have wished for. I then struggled in college and had to give up right before my final exams as I was too unwell to continue. I took some time and then returned to college to do my Access to Nursing Course before going onto university to study Children’s Nursing and achieving a first-class honours degree. After qualifying, I worked on the exact children’s ward that I spent a lot of my life, and even worked with some of the nurses who looked after me. To me that was an incredible achievement.
Everyone is on their own journey and it’s important not to rush it. I couldn’t even look at my bag when I first got it; I felt ugly and disgusting. I now appreciate it more than ever as I know I wouldn’t be here without it, but this doesn’t mean I don’t have difficult days. It’s important not to compare yourself to others that you see online, although it can be so helpful. Having a major operation can be really difficult and I’m not a good healer, so I’ve regularly had open wounds for months after surgery. At times you can feel really alone, but I have found the online community can offer so much support along with helplines and specialist nurses. I wasn’t aware of any of this back when I had my surgery, so I definitely think the support has improved.
I look at my body and I see a warrior. I survived and my body is stronger for it. It’s very important to love yourself first and this is something I’m still working on every day, but I am proud of my body and I’m thankful that my stoma saved my life and has allowed me to start living.
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