My Crohn's Story

I was diagnosed with Crohn’s in 2013 – as a seemingly healthy, happy 23 year-old – after a year of unexplained bouts of abdominal pain. These flares (as I learnt they were called) were becoming more frequent and intense, so I was prescribed immunosuppressant medication to try to keep them at bay. Unfortunately, they didn’t work, and I quickly developed a stricture in my small intestine that meant that no food could pass through my system. I spent much of that summer in hospital and five months on a wholly liquid diet (torture as a food-obsessive), whilst starting a stronger course of medication to try to ease the blockage. Unfortunately, that didn’t work either, so I had to have an operation to remove the affected chunk of gut. Thankfully, it was a success: I was kept on immunosuppressants to minimise the chances of my symptoms returning, but I could gradually get back to life as normal (and eat solid food!). After five years, I came off the pills. I’ve now been in remission for eight years, but subsequent complications (disordered eating and fertility issues) and the physical and mental scars of my ordeal, mean that I feel as though Crohn’s could creep up on me again at any time.

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Why I joined the IBD Patient Panel

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I joined the RLH IBD Patient Panel in 2020 to help others navigate their treatment and improve the services that our clinical team provides. We’re lucky to have fabulous doctors and nurses at RLH, and anything we can do to help them, helps other patients too!