It’s pitch black in the small hours of an Autumn night in Jesmond. A sense of urgency sweeps through the bedroom overlooking Sanderson Road, abruptly waking up a sleeping student. No longer safe in an unconscious haven of REM cycles, she wakes to a world of worry and earth-shattering pain, set to change the course of her day.

Though unfortunately not uncommon, this is an unexpected wake-up call for Florence Rampley, who is living with Crohn’s Disease.

While small in stature, there is an air of quiet confidence which radiates Rampley’s disposition. Diagnosed at 15 years old, it is clear from her exterior that years of hardship have only strengthened her character, resolved to defy one’s assumptions about what it means to live with a chronic illness. Today, however, is one of the impossible days, an imminent question mark which can only be answered by a trip to the Trauma and Emergency Centre at the Royal Victoria Infirmary (RVI). 

The pain is similar to the sharp shooting agony of a stab wound, explains Rampley, but the feeling of these early mornings is beyond expression. No such comparison is able to do the pain justice. While bleeding internally through her bowels, Rampley makes her way to the RVI.

Oftentimes this journey is spent in an ambulance, but this morning she is driven by housemate Nicola Stonham, who is also a student at Newcastle University. They arrive at the Trauma and Emergency Centre, received by a busy room of individuals each with their own story. For Rampley, her story is one of ineffable worry, not just a worry of the pain at hand but of her future and the complications which could arise following on from today. While her time in this room may be shorter than most, quickened by records of her medical history with the NHS, her time spent in the hospital is likely to not be brief. 

Affecting approximately 300,000 people in the United Kingdom, no single experience of Crohn’s Disease is the same.

Crohn’s Disease is an inflammatory bowel disease where one’s immune system attacks their gastrointestinal system. While the disease is likely to be found in the end of the small intestine, it can affect any part of your gut from your mouth to your bottom. This means a wide range of symptoms can impact a person’s lived experience.

Dr Aatharan Loganayagam, a gastroenterologist at The Blackheath Hospital in London, explains: “Being young is a risk factor”, and having a family history of inflammatory bowel disease “significantly increases” the chance of developing the condition – both of which apply to Rampley. Common symptoms of the disease can range from diarrhoea, often mixed with blood and mucus, severe stomach pain, extreme tiredness and weight loss. Yet these daily struggles are merely surface level, explains Rampley. 

“People think Crohn’s is just irritable bowel disease, but people forget that the drugs are so strong that I might not be able to have children anymore, and that’s something I have to live with at the age of 21”

In reality, Crohn’s Disease is a chronic condition of mental health issues, cancer scares and problems of infertility. With Rampley’s day strongly centred around her medication, complications are an all-pervasive anxiety. “You know you could be causing yourself long-term damage from these treatments”.

Rampley adds: “It’s the days where you think everything is fine which are the hardest”, where a scan could reveal a complication, the need for yet another surgery. 

“It’s draining. Extremely draining. Sometimes you feel like no one understands,” she says, adding, “more awareness of this needs to be raised”.

All hope is not lost, however. Rampley explains she may have the chance to take part in a new treatment of Crohn’s, consisting of fortnightly blood transfusions, later on this year. Though her place in the cutting-edge treatment is not confirmed, it would improve her use of current medications drastically.

Consultant gastroenterologist Professor Stuart Bloom confirms issues of quality of life for the people living with Crohn’s, in particular those who are diagnosed at a young age at a time where social relationships are most important. “It’s really difficult to be able to talk about this disease… it can impact school life”, Professor Bloom says. 

This wider symptom of chronic illness is all too relatable for Rampley. At Newcastle University, Rampley explains, “I feel like I’m always a step behind everyone else”. Her inability to attend lectures, or use facilities such as the libraries available to other students produces a lack of academic opportunity. Rampley, however, whimsically explains how living in Jesmond only exacerbates this feeling. Like a siren call to a sailor, the temptation of Osborne Road makes socialising painstakingly difficult and dangerous in equal measure. 

Yet despite the hardship, ultimately defined by the inability to look ahead to one’s future, Rampley remains unwaveringly optimistic about the present moment. Her friends and her support network in Jesmond have become her pillars of strength making an unbearable illness more tolerable.

“I’ll hold her hand, and let her know she’s not in it alone”, says Stonham, who waits with her friend. As Rampley’s name is eventually called in the grey room of A&E, she is taken to the emergency department where she will finally get her answer to the impending question of her illness: what has gone wrong this time?