My #GetYourBellyOut story: Beth

My name is Beth and I was diagnosed with Ulcerative Colitis in 2013. Initially I was going to the toilet multiple times a day and losing a lot of blood, so I went to the doctors who sent me for a colonoscopy. I received a diagnosis and was sent away with a bag full of Pentasa and enemas. I didn’t think much more about it for the next two years.

In September 2015 I entered my first major flare. I was going to the toilet 20+ times a day and I was struggling to maintain any life outside of the bathroom. I was taken into hospital for three weeks, pumped with IV steroids and Cyclosporine which ultimately didn’t help.

At the start of 2016 I was taken back into hospital with sepsis. I was being sick multiple times a day and was told I needed several blood transfusions to keep my body going. Despite this, the steroids, the Cyclosporine and azathioprine I wasn’t getting better.

March 2016 I was taken into hospital for my longest stay yet. I was barely eating, weighed around 6 stone and I started losing all my hair. I was put on Infliximab and patiently waited for a miracle recovery that sadly never came. After several doses of Infliximab and no improvement in my condition my colon was removed on 29 April 2016 and ‘Stan’ my stoma was born.

Sadly, in January 2018 after experiencing incredible pain which meant I could barely sit down or walk; I was taken into hospital for 10 days with a huge perianal abscess and a serious case of sepsis. As it turns out I had developed a fistula. I’ve had countless surgeries to try to heal the fistula and had a Seton in since 2018.

I’m currently taking Humira and Azathioprine. The decision has been made to proceed with the Barbie bum surgery any day now! Due to the perianal disease my diagnosis has now been changed from Ulcerative Colitis to Crohn’s disease and I plan to document my journey as I head into my next big challenge!

Someone on my ward at the hospital told me about #GetYourBellyOut, so I have followed them since day one of my ileostomy surgery. The lady told me that the community was amazing, and I should join the Facebook group to get support. So, I joined straight away!

#GetYourBellyOut is such an amazing place for people to come and discuss their experiences and just generally lift people’s spirits.

Living with a chronic illness can be lonely and scary. I have often turned to the page when I need comfort or to read other people’s stories. Although I am not someone who will post or reply to people, I am very much reading all the posts and comments. I have taken such comfort from other people’s invaluable experiences. Having a community of people who have shared similar experiences is such a gift.