My experiences with Inflammatory Bowel Disease (IBD) began with pains in my tummy, which then appeared to spread all over my body, even stretching up to my eyeballs. I also experienced extreme difficulty and pain when trying to use the bathroom, to the point that I would often cry after bowel movements. I found myself struggling with skin conditions that arrived like a storm and found that my body took an increasingly long time to heal from any wounds. I lost a huge amount of weight, and would barely eat anything at all, in case my stomach pain would overwhelm me.

I visited my GP, who was initially stumped by what was going on with me, especially by my strange and varied symptoms and suggested all sorts of diagnoses. In the end, I was referred to a hospital and put on a waiting list. As time passed, there were still no real answers, and my symptoms continued. I remember a particularly humiliating moment when I had to explain to a junior doctor in urgent care why my bottom pain was so bad it had radiated all the way to my genitals.

One day – unfortunately – the precise reality of my situation fell on me like a cartoon anvil. I was rushed into surgery to drain an infected fistula that had developed from an abscess in my bottom. The surgery was a mixture of terrifying and dull, taking hours to happen. After it was over, I needed fresh dressings every day and my body was still in revolt.

After the surgery, I finally got to see a gastroenterologist, who quickly diagnosed me with Crohn’s. After everything I had been through, it felt like at least a faint light at the end of a tunnel.

Life after this diagnosis has meant a cascade of surgeries to open me up, investigate the wreckage, and drain infected or risky fistulas. I also had to get used to a series of infusion appointments as well as taking daily medication. It’s a blessing, receiving so much wonderful (and free!) medical care at my North London hospital. Thank the heavens for the NHS.

However, I’m still processing everything that has happened to me and holding down any work throughout it all has been incredibly challenging. Thankfully, the infusions have made a big difference, but IBD massively impacts my everyday world, beyond the surgical and medical appointments. I can’t exercise right now and I’m often in pain and scared I’m going to have to run to the toilet. My weight fluctuates in a way that feels dizzyingly out of my control. The thought of relapse is a constant worry in the back of my mind. I now feel like I’m hobbling about trying to find my way. I’ve needed a lot of therapy to help me process what has happened.

On the plus side, though? I can eat again! I can spend time with friends. I can take in the world in a way that I hadn’t even realised I couldn’t before. It has been so hard, but there is hope. If I could convince the world to listen to me as I rant about Crohn’s, I’d want people to know that they should take any possible symptoms seriously. Blood in your poo should be a blazing warning sign. I’ve learned that you should always advocate for yourself in a medical environment, and I know that can feel really hard to do in a busy, overstretched hospital or GP surgery. If you feel unwell, fight for your right to be taken seriously. It could save your life. If you need to talk to someone about feeling suicidal, please contact a charity such as Samaritans for further support.

Check out more of my writing at Toby Howls on Substack: https://tobysharpe.substack.com/