A young patient who experienced the first signs of Crohn’s disease aged just 14 has urged others who have been recently diagnosed to take their medication and follow their doctor’s advice to give them the best chance of successfully managing the illness.
Sam Hinds realised something was wrong after dropping around seven stone within the space of just six months. He lost his appetite and would experience severe pain after eating, which left him sapped of energy and unable to take part in normal teenage activities with his friends.
After several visits to his GP, his mum insisted on a referral to Colchester Hospital after recognising similarities between Sam’s symptoms and those faced by his aunt, who has Crohn’s. A colonoscopy examination confirmed his diagnosis, and Sam was prescribed medication to help control his symptoms.
“Anything I ate would leave me in pain – it became a choice between feeling hungry or being very uncomfortable and nauseous,” said Sam, who is now 23. “I spent my days curled up in bed unable to move, had low energy levels and found it difficult to get motivated.
“Receiving the diagnosis was hard as I didn’t want to believe it. I was only 16 but had a potentially debilitating condition which would affect me for the rest of my life. As a result, I didn’t take the medication I was prescribed – at the time I thought it was easier to block out the illness and ignore it – but that decision came very close to killing me.”
Three years later, Sam was rushed into hospital with severe abdominal pains. The cause of his discomfort became clear when his surgeon discovered two feet of rotting bowel inside his abdomen while carrying out a resection operation.
“My bowel was necrotic – it was so severe that it should’ve killed me several months earlier,” said Sam, who lives in Wivenhoe. “I don’t know whether it was because I didn’t take the pills, but there’s a massive possibility that contributed to it. If I’d listened to the experts I may have kept on top of the illness and this may never have happened.
“Two weeks later, I faced some complications and had a second surgery to form an ileostomy. I was only 19 so found adjusting to the stoma hard – but know that it was life-saving and I wouldn’t still be here without it. I’d advise anyone else who is given the option for an ileostomy to go for it – if you experience any problems, there are always things the nurses can try to help mitigate them so that you can get on with your life.
“My stoma was reversed after about six months, and although it took me time to recover, I felt healthier than I had for the past five years. I went back to work and defied everyone’s expectations – I was really proud of myself.
“Since then I’ve been back to hospital a couple of times with obstructions, but have been prescribed new anti-inflammatory medication and an anti-tumour-necrosis inhibitor, which already feel like they are making a massive difference.
“I still need to be careful what I eat and drink, but have very high hopes for the drugs and hope I continue to improve so that I can show the Crohn’s I’m winning, get back to work and eventually to full remission.”
Sam is now issuing a heartfelt plea to other young people who have been diagnosed with the illness, urging them not to repeat the mistakes he made and follow the advice of their doctor.
“My message is simple – take any pills you are given, attend your appointments and don’t try and ignore the illness – a couple of years down the line, it could end up almost killing you,” he said.
“Find something which motivates or inspires you, like a quote or a poem or a verse, and use it to help you keep going through the tough times. If it makes you feel better even just for a couple of minutes, then that shows you are strong enough to keep going for the next two minutes and the next, and the next.
“Its also important to remember that there’s nothing you can’t do – you just need to be a bit more careful than other people. You can go for walks, play football, ride a bike and go to the gym – just take it slowly.
“Above all, don’t let Crohn’s stop you. The condition can cause a lot of pain, but don’t let it take over. Although its one aspect of your life, it doesn’t define you as a person.”