From missed university terms to dating anxiety — Evelyn Richards speaks to two young women to learn what life with inflammatory bowel disease is really like.
When you’re young, illness isn’t generally something you expect to define your life. When I was in my late-teens and early twenties, I considered chronic conditions as something that only happened to other people.
But for many young women living with Crohn’s disease or ulcerative colitis, the reality is very different.
These are invisible illnesses, but they’re no less life-altering — reshaping everything from education and relationships to confidence and daily routines. Symptoms are often dismissed or misattributed, and diagnosis can take months, or even years.
As part of Living360’s partnership with Crohn’s & Colitis UK, I spoke to two young women living with the conditions, offering honest insight into what life with a chronic illness really feels like.
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“I thought the pain was normal”
For Lucy Aitkins, who was diagnosed with Crohn’s during her second year of university, the signs had been there long before she realised something was wrong.
She describes being “very ill for a long time” before seeing a doctor, but in the context of university life it was easy to explain things away. Like many students, she assumed her symptoms were simply the result of “drinking most nights”, rather than something more serious.
Looking back, the warning signs were there even earlier. Frequent stomach aches as a child had been investigated but never explained, leading her to believe that pain was simply something everyone experienced. It wasn’t until her weight began to drop — losing two stone in a year — that something felt seriously wrong.
She remembers being unable to keep food down and going to the toilet up to 10 times a day. When her ankles swelled up so much that she could barely walk, she knew something was seriously wrong and called her parents.
Waiting for answers
Getting a diagnosis was far from straightforward. Despite describing a long list of symptoms, Lucy was offered a GP appointment weeks away. It was only after pushing for an emergency slot that things began to move more quickly.
Lucy recalls being told that one test had suggested bowel cancer, something her doctor said was unlikely but not impossible. The two-week wait for a colonoscopy was, she says, “really tough”. By then, she knew how unwell she’d been for months — nearly a year — and the uncertainty was overwhelming.
When the diagnosis finally came, it was Crohn’s disease. In that moment, relief and fear existed side by side. She remembers feeling “honestly happy”, but still overwhelmed by what came next.
Her condition was severe, and she was admitted to hospital for five nights after being told her bowel was close to perforation.
Read more: There’s a ‘bowel cancer tsunami’ among young people — here’s what you need to know
When your body changes overnight
For Lucy, recovery was slow and disorienting. Having lost significant weight and muscle, even walking felt unstable. Strength had to be rebuilt gradually, starting with short walks in the park.
The contrast with her life before was stark. She had been a “strong and healthy ballerina”; now, even standing felt like effort.
Crohn’s also disrupted her education. She missed the end of her second year at university and delayed her exams, spending months recovering at home before returning for her final year.
Even then, recovery wasn’t linear. While steroids initially helped restore her appetite and weight, coming off them brought new challenges. Despite medication reducing inflammation, she describes how her appetite disappeared again, leaving her feeling nauseous around food — something she still struggles with.
“It’s frustrating and isolating”
For Rae Giussani, who was diagnosed with ulcerative colitis just after her 19th birthday, the experience was overwhelming.
Her symptoms escalated quickly. At one point, she was going to the toilet more than 20 times a day, dealing with pain, blood in her stool and increasing exhaustion. Although her diagnosis came within four months, she describes the process as anything but quick.
“When you’re that unwell, you can’t leave the house, so waiting weeks for tests feels far too long,” she explains.
By the time she received a diagnosis, Rae was extremely ill and required emergency hospital treatment. When her symptoms returned after coming off steroids, she was readmitted and put on biologic treatment.
Emotionally, the impact has been just as significant as the physical.
“It’s frustrating and isolating,” she says, describing a sense of missing out on university, friendships and independence. There’s also the challenge of adapting to a body that feels unpredictable.
The parts no one sees
Beyond the physical symptoms, inflammatory bowel disease affects almost every aspect of daily life, often in ways that aren’t immediately visible.
There are the obvious disruptions such as missed lectures, cancelled plans and hospital stays, but also the quieter adjustments. Navigating social situations, managing fatigue and rebuilding confidence in a body you feel like you can no longer trust.
Lucy describes dating with a mix of humour and honesty, recalling how she would “pray” that she could get through without urgently needing the toilet.
She also highlights the emotional impact of looking “fine” while feeling anything but. Being told you don’t look ill can feel dismissive, even when it’s well-meaning.
Learning to live with it
Over time, both women have begun to find ways to manage their conditions, though neither describes it as simple.
Lucy says she’s now “coping really well”, thanks to medication that has brought her inflammation levels back to normal. She’s regained stability — able to work, socialise and enjoy food again — though she notes that feeling “normal” doesn’t necessarily mean feeling completely well.
Rae, still early in her journey, describes her experience as ongoing trial and error, learning what triggers her symptoms and how to balance treatment with everyday life.
If you would like to support Living360’s fundraising efforts for Crohn’s & Colitis UK, visit Evelyn Richards’ JustGiving page.
Feature image: Canva
