Campaigns and awareness Case studies Barry: determined to beat Crohn's disease At the age of 28, Barry Edmondson had the world at his feet. He had finished university, spent seven months travelling, and came back to the UK, ready to forge a career as a musician. Within months, he was lying in a hospital bed, ‘praying to see tomorrow’. My body had begun to fall apart, I spent four weeks in total in that hospital bed and another eight months on a couch, praying to whatever God there might be that the drugs start to do their job. Although he didn’t know it at the time, Barry was suffering from Crohn’s disease, a chronic inflammation of the intestine for which there is treatment, but no cure. The first sign that something was wrong was when he noticed blood in his stools in April 2011. “Cue panic! I immediately went to the doctor. I was sent away having been diagnosed with suspected irritable bowel syndrome or hemmorrhoids. They said my symptoms would settle. “This wasn’t the case. In fact, my symptoms slowly worsened,” said Barry, who at the time was the lead singer with a band called The Benedicts, based in Hampshire. For the next few months, Barry made repeated visits to the doctor and underwent a colonoscopy. They told me I should try and get more sleep to combat the severe fatigue I was now experiencing. I thought maybe I’d picked up some bug when I was travelling, but I hadn’t – if only it had been as simple as that. Barry's Crohn's diagnosis For a total 18 months, Barry continued to pass blood and was in such pain that he was unable to leave his bed. There seemed no remedy. “I’d stopped eating and dropped from 11 stone to 9. I was finally rushed to A&E in November 2012 by my mother where I was treated for acute abdominal pain and bleeding and severe anaemia.“ A few weeks earlier I’d been out drinking with friends and making plans for the future. Now I was lying in a hospital bed just praying to see tomorrow. I guess that after nearly two years of not knowing what was wrong, my body had essentially begun to fall apart.” For a further four months, Barry was in and out of hospital, undergoing tests and taking medication. But nothing brought relief. In April 2013, he suffered a turn for the worse and found himself back in hospital. That’s when he was finally diagnosed with Crohn’s disease. It was somewhat encouraging to know that we had finally got to the bottom of what we were dealing with and I spent the following months concentrating on eating and building up my strength. It was only in September 2013 that I started to look less like a corpse. I was finally able to start looking forward and to think positively about the future.” Running the marathon was my big chance to give the disease the mighty two fingers Dealing with the diagnosis Barry adopted a gluten-free and lactose-free diet. He had therapy for post-traumatic stress, was on heavy medication and received IV infusions every eight weeks. He also decided to run the Virgin London Marathon in April 2014. “Running the marathon was my big chance to give the disease the mighty two fingers and to prove that I wouldn’t be beaten by it,” he said. “I was an avid long-distance runner before I became ill and I didn’t want to let the disease take that from me. I wanted to deny Crohn’s that victory at least. ” During eight months of intense training, Barry’s health stabilised and he was heading towards a 3hr 30mins completion time in the 2014 London Marathon. His former band members Simon Mather and Steve Stokes (also his brother-in-law) did all they could to help keep him going. “They were with me all the way. They saw me looking like a corpse for months on end. We kept doing gigs throughout the year but I was so weak that each gig seemed like a marathon. I don’t know how we managed it. “Three weeks before the London marathon, disaster struck: Barry’s symptoms returned with a vengeance and he ended up back in hospital. He did raise more than £3,000 for Bowel & Cancer Research ‘so it can continue the research it does into my condition and other related illnesses’. But his battles, both medical and emotional, were by no means over. Barry battles his Crohn's Whilst undergoing tests and spending weeks on end in hospital, Barry lost his day job and his flat. He missed his grandmother’s funeral. It was a deeply crushing blow when his girlfriend ended their relationship in April 2014, just 24 hours before he planned to propose. “I stopped eating. At 7-and-a-half stone and severely anaemic my physical condition had reached a critical point. I was too weak to leave my bed, too scared to fall asleep and too tired to fight any more,” he said. His family (mum Julie, dad Bryan and three sisters Heather, Hazel and Holly) were his constant supporters. “My mother was amazing. If it hadn’t been for her insistence with the doctors, I’m sure I’d be dead,” he said. My family never left my side, doing everything they could to keep my head above water. "My mother constantly watched over me, desperately trying to feed me in an attempt to prevent any more weight loss . “I began using the last dribble of energy I had to research ways in which to end my life. All that held me back was the thought of what it would do to my family who continued to fight even when I had all but given up. “The disease slowly loosened its grip and I finally began the long journey to remission. I cautiously began reintroducing solid foods in to my diet, excluding anything that might be a trigger such as wheat, gluten, and processed foods. “I am still underweight, although I am just about as fit and healthy as I once was, minus a few pounds. I am older and greyer, but much wiser. “Sadly though, I am incredibly damaged from the whole experience, and not a minute goes by without thinking about what is and what might have been. I suffer from terrible anxiety and panic attacks. I have nightmares every time I close my eyes, constantly haunted by my own thoughts. “My self-confidence has been shattered: I feel repulsive, diseased and worthless. I’m suffering from depression and there are days when I still think about giving up. I hope that I will overcome my fears and be granted a long and healthy life. “I don’t want to be seen as someone to feel sorry for. But this disease stole the life I had and its effects have changed me forever. I am not alone in my struggles. Sadly, there are millions of people like me struggling with the effects of Crohn’s disease. Yet people seem so unaware of the suffering these chronic illnesses cause. It’s so important to me that my story is heard "This is my chance to open people’s eyes and maybe educate them. “Listen to your body. If you feel something is wrong, don’t let anyone, including doctors, tell you that it’s nothing to worry about. “There has been so much change in my life since I became ill that everything before now seems irrelevant. I honestly feel like I died that month in November 2012. “I hope that one day I can make my family proud and repay each of them for all the support they have so selflessly given me over the years. I hope that I can continue to grow, to learn, to be the best possible version of myself. I imagine that these are the hopes of every one of us. All we have is hope. You can follow Barry’s blog: Cast this breath into the breeze.