I am just glad to be alive,’ says Hull teenager with Crohn’s disease after emergency surgery saved his life

A Hull company is the first in the country to try out a new app which sees staff living in the shoes of someone with Crohn’s Disease. Catherine Scott reports.
Jacob Hodgson, 19, who is campaigning to raise awarenss of Chron's Disease after he was diagnsd with the debilitating condition when he was 17Jacob Hodgson, 19, who is campaigning to raise awarenss of Chron's Disease after he was diagnsd with the debilitating condition when he was 17
Jacob Hodgson, 19, who is campaigning to raise awarenss of Chron's Disease after he was diagnsd with the debilitating condition when he was 17

Jacob Hodgson was just 17 years old when he was diagnosed with Crohn’s disease in February last year.

His diagnosis was sudden and scary following life-saving surgery. At 4am one morning, he was in severe pain and couldn’t move an inch.

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“I felt like something inside of me was going to pop,” recalls Jacob, from Hull. His mum called an ambulance and he was blue-lighted to Hull Royal Infirmary where he underwent numerous tests, including a CT scan.

In My Shoes App which aims to show to people what it's like to have Chron's disease for 24 hoursIn My Shoes App which aims to show to people what it's like to have Chron's disease for 24 hours
In My Shoes App which aims to show to people what it's like to have Chron's disease for 24 hours

“A specialist consultant delivered the devastating news that my bowel had perforated and had caused sepsis; the blood tests confirmed this also. The consultant also advised that I was hours away from dying and had to undergo emergency life-saving surgery,” says Jacob, now 19. “It was then they also diagnosed Crohn’s disease. This was very scary for me because it was at that moment I realised the seriousness of it all. My body was attacking itself.”

He woke up from surgery with a Crohn’s diagnosis and stoma which he would have to live with for six months while his bowel rested. Stoma surgery creates a small opening on the surface of the abdomen in order to divert the flow of waste from the bowel or bladder. The waste is then collected instead in a stoma bag.

“It takes a lot of getting used to mentally, especially when you are a teenager,” recalls Jacob. “I had no idea what it was. The stoma nurses were amazing and really helped me, but none of them have actually had a stoma so they don’t really know what it’s like. But I was thankful just to be alive.”

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Crohn’s Disease and Ulcerative Colitis — the two main forms of Inflammatory Bowel Disease — are lifelong diseases of the gut. They are painful, debilitating and widely misunderstood. And there is no known cure. When you have Crohn’s or Colitis, your immune system doesn’t work properly. Your body starts attacking itself, causing ulcers and inflammation in the gut.

Jacob talks about the ‘‘dark place’’ his sudden surgery and diagnosis put him in and once his stoma reversal had settled doctors decided to give him pioneering medication.

It involves Jacob going to hospital every eight weeks for an infusion of genetically modified antibodies. Infliximab, as the drug is called, works by suppressing the body’s own immune system to reduce inflammation. Jacob started the treatment, which he will need to take for life, just before the first lockdown which meant his treatment had to be moved from HRI to Beverley hospital. And, being high risk, he had to shield at the height of the pandemic.

“It was really mentally brutal – okay, you’re safe in your own home, but you can’t go anywhere. At the beginning I couldn’t even use my own garden – I had to just open a window if I wanted some fresh air.”

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When his place of work, Hull-based IT and telecommunications company The One Point, was able to re-open its offices, Jacob was among the first to volunteer.

“After that shielding experience, I couldn’t wait to get back,” he says. His colleagues have supported Jacob ever since his diagnosis – forming a rota for hospital visits shortly after his surgery, putting a WhatsApp group together so they could share updates with each other on his condition, and showing compassion and support for his recovery and ongoing treatment which can require time off work during flare-ups and drug treatment cycles.

Now The One Point, has become the first company in the UK to encourage its employees to complete In My Shoes: 24 Hours with Crohn’s or Colitis. It is the first health app of its kind designed not for people affected by a condition themselves, but rather for other people to use to gain a greater understanding of what life with that condition must be like. In My Shoes is a 24-hour immersive experience that provides the user with a series of notifications and tasks, prompting them to think about how Crohn’s or Colitis can impact daily life. From depleting energy levels to managing pain, from rushing to the toilet to juggling work and a social life, the app helps the user to experience first-hand how these conditions can affect every part of the body, and every aspect of life. It’s proven to help build empathy and understanding for people with Crohn’s and colitis.

Jacob, who campaigns on behalf of the Crohn and Colitis UK to raise awareness of the condition, was thrilled when his managing director agreed all 40 of the company’s employees could be encouraged to take In My Shoes app.

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Several colleagues have already lived a day in Jacob’s shoes thanks to the app, and have told him they had no idea that living with Crohn’s or Colitis impacted so much – physically and mentally.

“I’m bowled over by the support already shown by my colleagues,” says Jacob, who works with local employers to encourage them to introduce accessible toilets for staff and visitors. “As part of my activism work to raise awareness of Crohn’s and Colitis, I see so many horror stories online about people who have lost their jobs or who have been shown zero empathy and understanding by their employers. The fact they want to support me further, by living a day in my shoes thanks to the In My Shoes app, is overwhelming.”

“The world has changed dramatically in 2020,” comments Sarah Sleet, CEO of Crohn’s & Colitis UK. “In the midst of another period of huge uncertainty as we approach Christmas, it becomes increasingly important that people living with Crohn’s or Colitis feel understood.”

Crohn’s & Colitis Awareness Week takes place from December 1 to 7. In their ‘Life in Lockdown’ survey of 7,666 of their supporters, leading national charity Crohn’s & Colitis UK found that nearly half (46 per cent) of people living with Crohn’s or Colitis felt isolated, with more (48 per cent) reporting that their mental health had been negatively affected. The In My Shoes: 24 Hours with Crohn’s or Colitis App, developed in collaboration between Crohn’s & Colitis UK and Takeda UK, enables people to ‘step into the shoes’ of someone living with these conditions, start conversations and help people affected to feel less alone.

www.crohnsandcolitis.org.uk

mystomajourney.co.uk

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