Amy’s story – Crohn’s Disease

Amy is our Communications Officer and has been a supporter of Guts UK since she found us in 2021. She has Crohn's disease, a form of inflammatory bowel disease and was the third youngest in the UK to be diagnosed at the time.

Tell us a little about yourself

“I’m Amy and I’m 31. I’m from East Yorkshire and I live with my husband, Ben, and our dog, Bee. I am so proud to work for Guts UK. My hobbies include beach walks, singing lessons, learning about the body and attending music concerts.

When did your symptoms begin?

From as young as I remember, I had symptoms. Mum and dad told me that as a baby and toddler, I had frequent diarrhoea and doctors diagnosed me with malnutrition and diverticulitis numerous times. However, nothing ever really got better. It wasn’t until I started junior school that my symptoms really escalated. I experienced debilitating stomach pains, constipation, diarrhoea and urgency, sores around my bum, lost my appetite, felt nauseous, was always cold, extremely tired and was rapidly losing weight. I spent the majority of my first year at junior school in hospital instead.

When and how were you diagnosed with Crohn’s disease?

When I was first under the care of the children’s clinic, my Mum and Dad were asked if the family had any history of bowel problems. My uncle, who is sadly no longer with us, had ulcerative colitis. Mum’s side of the family also has a history of bowel problems.

The doctor at the time decided it was time to look into this further and as much as I didn’t like him at the time for it, he referred me for many tests. A few months down the line, I was diagnosed with Crohn’s disease.

How did you feel as a child being diagnosed with Crohn’s disease?

I can’t remember anything I felt but fear. Hospital as a young child was incredibly tough and I struggled to understand exactly what was going on. I just remember desperately wishing for something to stop my severe stomach pain and to be able to control when I went for a poo. I felt so ashamed as a child not being able to hold my bowels. At my worst, I tried to make it to the hospital toilet and had an accident all over the ward floor before I got there. I felt mortified. I just wanted mum and dad to take me home to my brother. I just wanted to be okay.

Being the third youngest to be diagnosed at the time, my dad and I had to go to another hospital for a second opinion once a year. So little was known about Crohn’s disease in children compared to now and looking back, this very much shows.

Talk us through your treatment and why you had a stoma formed

I went through a whole shopping list of treatments for my Crohn’s. I became reliant upon steroids to the point where even tapering down 1mg would bring on a sudden and severe onset of symptoms. I had other medications such as other immunosuppressants and aminosalicylates (drugs that are used to reduce swelling). I also went on a liquid diet of prescription supplements.  The aim of this liquid diet was to give my bowel a rest but it sadly never worked.

I moved up to the adult clinic just before I was 18 and finally plucked up the courage to have an endoscopy and colonoscopy. I asked for the maximum sedation possible and don’t remember a thing! I’ll never forget the results of this. I often relive it like it just happened yesterday. My consultant told me it was the worst case of Crohn’s he had seen so far in his career. I was put straight onto an immunosuppressant medication, then months after this, started on a biologic, infusion treatment. Unfortunately, none of these worked and at age 19, I was told I would need surgery to form a permanent ileostomy.

How has your life changed since getting a stoma?

“If we hadn’t operated when we had, there’s a high chance you wouldn’t have survived.” That’s what my surgeon told me the day after my life-saving surgery in 2011. I am thankful for every day I wake up and get to live a fulfilling life. This is something I could only once dream of. Life with an ileostomy isn’t always a walk in the park, but it’s a walk in the park I can usually partake in and make the most of. It’s given me a life. I’m far from just existing and it’s become part of my everyday routine. Just like brushing my teeth.  

Why are you sharing your story today?

19-year-old Amy needed to see me now and know it was going to be okay. It would have helped me so much, especially in the early days of recovering. It might sound cheesy but if my pain can help even just one person, then it was worth it all. You’re not alone.”

What we do

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.