From Crohn's diagnosis at 15 to being freed from the prison of his own home and having it all
World IBD Day takes place on May 19 each year to unite people in the fight against Crohn's disease and ulcerative colitis - chronic incurable digestive diseases suffered by millions.
Joe Dowson had been a sport-loving, grade-A student in perfect health until the age of 14.
When he began suffering from diarrhoea he assumed he had a stomach bug. When it continued, he thought he had a sensitive stomach and tried to work out what food made it worse.
But as his condition deteriorated, he soldiered on alone.
Remembers Joe: “I had been at a very happy time in my life. I loved school, had lots of friends, played loads of sports and was doing really well in my GCSEs. Suddenly all I could focus on was how to get to the nearest loo.
“I didn’t tell anyone. I was too embarrassed. I was convinced it would stop and life would go back to normal but it got so bad, I had to tell my parents and go to the doctor.
“I had a colonoscopy and was mis-diagnosed at 15 with colitis, a similar condition, and treatments didn’t have much effect.”
The pain and symptoms worsened and Joe's life changed dramatically. He had to take more and more time off school because of the constant round of hospital appointments for tests and new medication.
Says Joe: “I lived with pain and the constant need to find a toilet. I was practically trapped in the house for two years. Any journey anywhere meant mapping out beforehand where every single toilet was.
“But I managed to get through my GCSEs, even though I had only managed to attend 40 per cent of my lessons. I was proud to get a couple of A grades and a handful of others.”
A year later, doctors discovered Joe had Crohn’s, a lifelong condition in which parts of the digestive system become inflamed.
When treatment failed, the only route was surgery at 18.
“They cut out the whole of my large intestine because my disease was so widespread, and gave me a colostomy bag,” he says.
“Even though I knew what to expect when I woke up, it didn’t prepare me for the shock of seeing the bag, and what was going into it. I felt horrified. At that age, having a colostomy bag was a big source of embarrassment to me.
“I decided I had to write off ever having a girlfriend; who was going to want me with a bag of poo connected to my body? And I gave up on the dream of university and a career.”
Yet the colostomy bag gave him quality of life again.
“I felt an unjustified sense of shame over my colostomy bag, when it was a great thing. For the first time in years I had no pain - the infected area had been cut out. And I no longer had to worry about the constant need for a toilet. I could have a normal life and go out with friends,” he adds.
Although he’d had to leave his A-Level studies, he was able to go back to sport. He coached a badminton group, worked as a teaching assistant in a school and took a sports science course, passing with distinction.
A year later, at 19, Joe had to rethink the first restriction he had imposed on himself. He had met a girl, Chloe Watmore, an economics student, while visiting a friend at university. They became friends, but as love blossomed, Joe had a crisis of confidence.
He remembers: “I knew I had to tell her about the bag. I was terrified she would call me a freak. But she was so supportive. Her grandfather had suffered with Crohn’s; she knew exactly what life was like for me and we became a couple.”
Chloe has supported Joe through two further major operations to remove sections of diseased bowel and work towards a colostomy bag reversal.
Joe bounced back and also had to eat his words about Crohn’s blighting a career. He worked for a training company in the construction sector, then moved to Chesterfield to support Chloe when she took up a change-management role at her parents' thermal engineering business, Thermotex.
The company is now a leading exporter of thermal solutions and custom-designs high-performance insulation jackets and heat tracing systems relied on for temperature control by companies around the globe.
Chloe, now 26, became MD at the age of 23 with Joe by her side as sales manager.
Together the couple have steered the 24-year-old company into an award-winner, growing its staff to 25 and filling the order book.
Said Joe: “I came in to take some of her workload on a short project basis and I’m still here, helping to grow the business. I have a demanding career, which I love, and a great boss, who I married last year!”
Joe had a final operation aged 23 to link his small intestine to his bowel, which freed him of his colostomy bag.
He manages his symptoms by taking four Immodium tablets a day and with a diet which contains the exact opposite of the healthy foods we are encouraged to eat.
Joe can’t have salads or many green vegetables. He has to have a high salt intake and plenty of carbohydrates, protein and dairy foods.
“Basically I have to eat an unhealthy diet to stay well. I have to avoid high-fibre foods which contain a large amount of water and vegetables with skin on - tomatoes, peppers, sweetcorn and mushrooms are a nightmare,” explains Joe, who is a member of the National Association for Crohn’s and Colitis.
“Pasta, potatoes, rice and cheese are great for me and plenty of salt absorbs water from my digestive system.
“My stomach takes a direct hit if I get a cold or flu, but otherwise I am in complete control of my symptoms. I have a demanding career and travelling for work by train and plane is no longer a worry. now. I live for sport and play football regularly.
“A lot has changed since I was a teenager, trying to get through it alone. I would urge anyone suffering in silence, feeling their life is being ruined, to be brave and tell someone as early as you can.