“There were tears in my eyes” – Salford resident opens up about her struggle with Crohn’s disease

A Salford woman has urged other people to take gastrointestinal symptoms seriously following her “isolating” experience with Crohn’s disease.

Amy McGregor, who lives in Salford, was diagnosed with Crohn’s disease at fourteen, after months of stomach cramps and blood in her stool.

Not knowing much about the disease, outside of Amy Dowden and her activism for more visibility surrounding Crohn’s, Amy’s initial anxiety was worsened when online searches suggested her symptoms aligned with those of bowel cancer.

She said: “The first thing that comes up is gonna be the worst… There were tears in my eyes.” After going to the doctors, Amy was diagnosed with various allergies, along with Crohn’s Disease.

The diagnosis gave her clarity, she said: “Everything fell into place with it and it was like, ‘Oh, my God, I know what’s wrong with me now.
I can make sense of it.’” 

Despite finally receiving answers, Amy said that learning she had Crohn’s uprooted her life during her already stressful teenage years: “I was already so restrictive in what I was eating anyway.

“But then I was restricting myself more and it wasn’t fun and learning to grapple with it at such a young age too… trying to go through school and explain it to people and adjusting my diet the first time round.” 

“I remember I’d take lunch into school, it would be gluten-free bread and oil on bread, because I didn’t know if I was allowed butter yet – it was a lot of trial and error.” 

Amy’s experience is not unique, insists Crohn’s and Colitis UK. According to their statistics, one in 120 people, or half a million Brits, live with a diagnosis of Crohn’s Disease or Ulcerative Colitis, with the numbers only increasing – especially in young people.  

Crohn’s and Colitis UK are aiming to dispel the stigma surrounding the conditions for their Crohn’s and Colitis Awareness Week and transform perceptions of those with the diseases. Marianne Radcliffe, chief executive officer at Crohn’s & Colitis UK, said: 

“Our Awareness Week this year is all about exploring how it really feels to live with Crohn’s or Colitis. As invisible illnesses, the huge mental and physical impacts of the conditions aren’t always obvious from the outside. 

“It’s not just the painful symptoms, the hospital trips and the medication. It’s also how it makes you feel, every day, living with a life-long condition.” 

Amy explained that the doctors who diagnosed her offered little to no support outside of medical options, only offering surgery or lifestyle changes. 

“You can either have an operation, or you can deal with it. I didn’t really want an operation because I was 14 and 15 so I thought I’d probably just firm it.” Amy said. 

Amy described the lack of support around her as quite isolating, as she felt she was only able to see other people with Crohn’s through online groups, which can often feel competitive.

She explained: “I kind of had imposter syndrome a bit with it, because I was like: ‘They’ve told me, I’ve got Crohn’s, but I’m not meeting every single symptom and I’m not meeting every single mark like typical Crohn’s.’”  

When asked how young people with Crohn’s could be supported further, Amy suggested specialised groups for different demographics.

She said: “I think it would benefit if I had young people, like a teenager with Crohn’s support group. I think I had to struggle so much because you’re going through so much at like, 14 years old, your body’s changing, and you’re growing and all this, and you wonder is it my Crohn’s or is it just because my body’s changing as a teenager.” 

In terms of change from, Crohn’s & Colitis UK, their sights are set on symptom awareness and combating the shame or embarrassment often associated with the conditions. Radcliffe said: 

“Without treatment, symptoms get worse. Delayed diagnosis often means debilitating pain, emotional trauma and countless trips to A&E. That means lives on hold and wasted NHS resources in an overstretched system.” 

“We work with an incredible community of patient advocates, celebrity ambassadors – Amy Dowden, Louise Thompson and Sir Steve Redgrave to name but a few – all hoping to raise the profile of Crohn’s and Colitis by sharing their own experiences.” 

You can learn more about Crohn’s Disease and Ulcerative Colitis Awareness Week here.