Ellie’s Story – Crohn’s Disease

"I’ll never forget trying to revise for my AS Levels and even after a full night’s sleep I’d fall asleep at my desk about 10 minutes into revision!"
Ellie shares her story of being diagnosed with Crohn's disease (IBD) as a child and explains how this impacted her education, right from being 10 years old to graduating from University.

Tell us about yourself 

“I’m Ellie, I’m 28 and am living in Birmingham with my boyfriend. Since completing my music degree at the University of Leeds, I’ve been enjoying building a career in communications. I enjoy playing the cello and piano, yoga, baking, and spending time with my dog, Mungo!”  

When were you first diagnosed with Crohn’s disease? 

“I was 10 years old when I was diagnosed with Crohn’s disease. Being so young, I didn’t fully understand what it meant, and I didn’t realise how much it would impact the rest of my life. My initial symptoms were abdominal pain, mouth ulcers, perianal abscesses, fatigue and weight loss.” 

How did you find growing up with Crohn’s disease? 

“Having Inflammatory Bowel Disease (IBD) throughout my childhood and teenage years was often tough. Some of my symptoms were what people would expect; abdominal pain and urgency to get to the toilet. Some of my other symptoms may surprise people; fatigue, weight loss, inflamed eyes and mouth ulcers 

I was on different treatments, tablets, steroids and liquid-only diets to try and get my disease under control. I frequently had time off school for colonoscopies, blood tests and scans. I also underwent major abdominal surgery in 2007 to remove part of my small bowel which was quite a lot to go through as a 13-year-old! 

While my surgery relieved some symptoms, I was still really struggling with my height and weight. I had nasogastric tube feeding 4-5 nights a week until I was in my late teens to help with this. I learned how to insert my own nasogastric feeding tubes myself and would do this each night, removing them every morning before school to avoid being seen with it by my peers.  

Throughout most of my school years, I experienced anaemia which impacted my energy levels. I’ll never forget trying to revise for my AS Levels and even after a full night’s sleep I’d fall asleep at my desk about 10 minutes into revision! 

How did your Crohn’s impact your time at university? 

My Crohn’s disease didn’t stop me from taking part in university life. I was lucky to receive funding from the Disability Student’s Allowance to pay the extra cost for an ensuite bathroom during my first year. My tutor and department were always very supportive, as were my friends at university. They were always kind and understanding when I had a flare up.   

Although I’d be lying if I said it was completely plain sailing. At the end of my first term, I spent a night in A&E with the worst pain I’ve ever felt. Turns out I had four kidney stones, which I had removed. People don’t always know but kidney stones can occur because of Crohn’s disease 

I also developed inflammatory arthritis for around 18 months which was likely as a result of building antibody resistance to one of my treatments. There were days where I couldn’t even get myself out of bed

I also lost sensation in two of my fingers which meant I couldn’t play the cello for a few months which isn’t ideal when you’re studying music! I had steroid injections to treat this. 

All of that said, coping with IBD need not make your time at university any less fun than it is for other students. I still had the most amazing three years and would do it all again in a heartbeat.”  

What is your life like now? 

“Life is good! I’ve been on new injections since March 2020 and my health is currently in a fairly stable condition allowing me to lead a relatively normal life. I do sometimes face occasional setbacks and also have to be careful with my diet and energy levels. But on the whole, I’m doing well and fingers crossed things stay this way for a while.”  

Why are you sharing your story? 

One thing I’m very keen on is continuing to spread awareness of Crohn’s disease. Living with a chronic illness is hard, arguably one of the hardest things I’ve dealt with in my life. It impacts my body, mind, relationships, career, plans, and choices. 

I think there is still a stigma that Crohn’s disease is just an upset stomach. I hope my story has proven, it impacts the whole body and can lead to other complications. 

My advice to other IBD patients? Take care of your mental health and never let IBD stop you from doing what you want to do. There will be ups and downs but there will always be people supporting you and willing to help, so make sure you talk to others and take one day at a time. You’ve gut this! 

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