Crohn’s Disease: Sheffield school pupil warned she ‘could die’ after contracting mystery illness

“If you don’t come in, you could end up dying,” the nurse told 15-year-old Samantha McCormick from Sheffield, who’d dropped out of Ecclesfield School after fatigue left her nearly bed bound, her weight plummeting to five and a half stone.

But Samantha, whose symptoms included diarrhoea after every meal, loss of appetite and debilitating stomach pain, was so frightened of being diagnosed with a lifelong illness, she just opened her mouth and let rip.

“I was so petrified of finding out what was wrong with me, I just screamed the ward down,” says Samantha, who is now leading service improvement as the patient microsystem coach for a project to redesign the inflammatory bowel disease (IBD) services in Sheffield.

“The nurse was weighing me after I’d been rushed into hospital with a Body Mass Index of 13. And I didn’t want to come back for investigations. Then she told me it could save my life and there was just something about the way she spoke to me that got through,” Samantha admits.

Sheffield Children’s Hospital

Samantha was diagnosed with Crohn’s Disease at Sheffield Children’s Hospital in 2002, while taking her GCSEs at Ecclesfield School.

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“At first, I thought I’d lost my appetite because I’d just started wearing braces, but then I started getting diarrhoea, which led to weight loss and feeling tired and exhausted all the time. I would struggle to even get out of bed,” Samantha admits.

Frightened of what was wrong, she hid her symptoms from her parents for months.

“Mum later admitted she thought I was anorexic because I’d run to the toilet after every meal,” she said.

Towards the end of 2001, Samantha felt too tired to go to school, and started being home schooled.

“That was the point when dad took me to the doctor. He insisted to the GP that I needed a referral and wouldn’t take no for an answer. While I was waiting for the hospital appointment I got thinner, and thinner and eventually my mum called the hospital who asked her to bring me in – I was admitted for tests the next day,” she explained.

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Thanks to starting on a biologic medicine, which blocks overactivity of the immune system and reduces gut inflammation, Samantha has been symptom free since 2014. She is now calling on other people with bowel conditions in the Sheffield area to help change healthcare for the better.

Around 3,000 people in the Sheffield area have been diagnosed with Crohn’s or colitis, the two main forms of inflammatory bowel disease (IBD), which can cause painful sores and inflammation in the gut.

As lifelong conditions with no cure, improvements in care, medication, treatment and support can make a huge difference to people’s lives.

AWARE-IBD is a three-year project funded under a Health Foundation programme called ‘Common Ambition’.

The Sheffield-based project was one of only four awarded funding out of over 350 applications and the only secondary care project in the programme. The aim of the project is to see services shaped by those who use them - people with Crohn’s or colitis.

Overseen by charity Crohn’s and Colitis UK and led by Professor Alan Lobo, Professor of Gastroenterology at Sheffield Teaching Hospitals, the project aims to put ‘what matters to you’ at the heart of people’s care.

The AWARE-IBD Project is calling for all patients of IBD services in Sheffield to have their say on what changes they’d like to see. “We want people from all backgrounds, their families, carers to be involved, contributing knowledge, skills and diverse perspectives,” says Samantha.

As the patient coach, Samantha is bringing a very personal passion to ensuring the project is a success.

“I bring my determination to my current job now, because I’ve had tubes up my nose, been on all sorts of different medicines, and all the way through thought, ‘If only the system worked like this, it would be so much better’ such as GPs always considering Crohn’s or Colitis as a possibility at the point of initial diagnosis.

“Being able to help improve those systems and get other patients’ thoughts and views on this is so important, because we are the ones who are using the service, we know what we want and need.

“Crohn’s and colitis affects everyone differently and that’s why personalised care is more important as there’s no one-size-fits-all solution with us.”

Crohn’s and Colitis UK CEO Sarah Sleet says: “People with Crohn’s and Colitis are experts by lived experience, so they know what makes a good and bad experience of care. To make real change in the way we re-design IBD services, we need to work with these experts – so that the services of the future are based on what matters to them. This project has the potential to teach us lessons we can use across the UK and is a unique opportunity for thousands of people with Crohn’s and Colitis to get involved and lead to real changes.”

“We need to hear from you so that we can make the changes you want to see,” adds Samantha.

“If you’re anything like me you’ll have plenty to say. Don’t be shy to give your views. We’d love to hear from as many people as possible.”

Professor Alan Lobo, the lead investigator for the project says: “This is a really exciting opportunity to understand what matters to all those with inflammatory bowel disease and give us the chance to work together to achieve those goals. It has been exciting to hear those views – including those who have previously been less well heard. I hope the way we go about this will also provide lessons for a wide range of healthcare.”

The AWARE-IBD Team want to hear from people in Sheffield with IBD and find out what matters most to them. Have your say by completing the Aware IBD survey at https://forms.gle/7xQ67Pyf8oJxeMeHA

You can get in touch with the AWARE-IBD Team directly by e-mailing [email protected]

What is inflammatory bowel disease?

The two main forms of inflammatory bowel disease, Ulcerative colitis and Crohn’s Disease, affect more than 500,000 Britons. In both conditions, the immune system goes into overdrive, attacking healthy tissue in the gut. Inflammatory bowel disease can develop at any age, although one in three will be diagnosed with the condition before they are 30. In the majority of cases, patients first visit their GP with tummy pain, diarrhoea, weight loss or blood in their stools.

If doctors suspect Crohn’s or colitis, they take a stool sample to test for a protein called calprotectin, which indicates inflammation in the gut. Further internal scans are then performed in hospital to look for physical signs of damage.

Patients are given anti-inflammatory tablets or suppositories called aminosalicylates, which help the tissue to repair itself, reducing pain and swelling.

What to do if you think you have Crohn’s or colitis

Other options include powerful steroids that lower inflammation by suppressing the immune system. Patients have started to have access to drugs known as biologics, delivered via an intravenous drip in hospital. These block fighter proteins called cytokines, which are sent out by the immune system and cause damage to the gut lining.

Crohnsandcolitis.org.uk will have a symptom checker from next month that will provide a printable and email-ready list of your results to take or send to your GP, along with some recommendations to your GP from the charity. This may recommend your GP carries out a faecal calprotectin test that identifies inflammatory markers in your poo at a level that will rule out the less serious condition irritable bowel syndrome and indicate further tests are required.