- Actor Jeff Hordley was diagnosed with Crohn’s disease when he was just 25
- His mother had died after a long battle with the same condition
- In 2002 he was hospitalised after haemorrhaging from his back passage
- He realised he would have to quit smoking and drinking to manage condition
When actor Jeff Hordley first developed stomach cramps and intermittent diarrhoea his GP blamed Irritable Bowel Syndrome and prescribed drugs to tackle the painful gut spasms.
For five years Jeff, best known as bad boy Cain Dingle in Emmerdale, dutifully took the drugs, although they didn’t seem to have much effect.
Then Jeff moved from his home in Oldham to Manchester and his symptoms worsened abruptly. He started also suffering from episodes of vomiting – within just a couple of months, he lost over three stone, plummeting to under nine stone, terribly thin for his 6ft frame.
‘I was weak and I looked terrible,’ recalls Jeff, ‘I remember looking in the mirror and thinking grimly that even if I survived, this was not a good look for someone trying to carve out an acting career.’
His new GP referred him for tests at Manchester Royal Infirmary – there a consultant broke the news that Jeff had Crohn’s disease, an auto-immune condition which causes the gastrointestinal tract to become inflamed, triggering symptoms including stomach pain, diarrhoea, vomiting, abcesses and even arthritis.
It was a shocking diagnosis – not least because when he was nine, Jeff’s mother had died following a long battle with the very same disease.
‘I was absolutely terrified, ‘ admits Jeff. ‘I was very close to my mum, and her death left a big gap in my life. Now all I could think of was that I was going to die too.’
An estimated 120,000 Britons suffer from Crohn’s. It’s thought to occur when the immune system mistakes bacteria normally found in healthy intestines for invading substances. It sends white cells to attack the ‘rogue’ bacteria – these white cells also cause inflammation which damages the surrounding tissue.
Although Crohn’s can involve any area of the digestive tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.
Unfortunately it’s not unusual for Crohn’s disease to go undiagnosed for some time, explains Helen Terry, director of information and support at the charity Crohn’s and Colitis UK.
‘Crohn’s disease and Ulcerative Colitis, which both come under the umbrella term of Inflammatory Bowel Disease (IBD,) share a few characteristics with the much more common Irritable Bowel Syndrome (IBS) such as diarrhoea,’ she said.
‘However, anyone whose bowel symptoms are accompanied by unexplained weight loss, or who is experiencing rectal bleeding should be referred to a hospital for further investigation. A simple blood test can flag up indicators of Crohn’ s such as anaemia, or inflammatory markers. A family history of irritable bowel disease is also significant, as there is a known hereditary element.’
As soon as Jeff was diagnosed, his father – also called Jeff – made a point of explaining that his mother’s death was actually caused by complications following an operation for her Crohn’s rather than the disease itself.
Indeed Jeff’s consultant reassured him that his condition was treatable – in many cases, patients manage with steroids, which prevent the destructive inflammation. However Jeff needed surgery immediately to remove the diseased part of his bowel.
The bowel is 6m long, and so can still function normally with a small section removed however Jeff was warned that depending on what surgeons found and how much of the tract was affected, he might need a colostomy bag, perhaps permanently.
Jeff, then 25, was stunned.
‘Having a colostomy bag at any age is a big deal, but at that age, it’s almost impossible to contemplate,’ he says.
He also felt nervous about telling his partner Zoe Henry, who also now stars in Emmerdale as Rhona Goskirk.
‘We’d met two years previously, at drama college. I knew I wanted to spend the rest of my life with her. But naturally, I was scared that the idea of a colostomy would put her off.’
However, Zoe, who’d previously worked as a nurse, was unfazed.
‘She was brilliant,’ remembers Jeff.
‘She just hugged me and said whatever happened, we’d cope with it, together.’
After surgery lasting several hours, Jeff came round to discover that surgeons had successfully removed the scarred part of his bowel – and there was no colostomy bag. ‘I was so relieved I could have cried,’ he says.
Jeff was in hospital for 12 days, and given steroids and an anti inflammatory drug. He spent the next few months regaining his strength, and for the next few years, lived a normal life, with only very mild stomach cramping and occasional brief bouts of diarrhoea – going back to the hospital for regular checkups.
Jeff felt so well that he allowed himself to think that his condition had somehow disappeared. However, Crohn’s is what’s known as a ‘relapsing and remitting’ disease, meaning that symptoms can die down for long periods of time and then flare up again.
And in 2002, six years after Jeff’s operation, things took a sudden and dramatic turn for the worse.
‘Zoe was appearing in a play at The West Yorkshire Playhouse, and I’d taken my dad and step mum to see it. I’d been feeling off colour for a couple of days, and during the interval, as I went to get some drinks, I suddenly felt dizzy and collapsed.’
Jeff was rushed to hospital with severe haemorrhaging from his back passage. The bleeding stemmed from the original operation site in his bowel, although doctors couldn’t say why it had happened. After more treatment with steroids, he again recovered well – but Jeff describes that episode as something of an epiphany.
‘I realised that Crohn’s would always be with me. And that I owed it to myself, as well as to Zoe and everyone who loved me, to start really taking care of myself. I knew that smoking and drinking alcohol – both of which I’d been doing – are both inflammatory, and can exacerbate the symptoms of Crohns.’
Jeff with his wife, actress Zoe Henry, who he says has been a huge support
With Zoe’s support, Jeff stopped smoking, cut right down on his alcohol intake and tried to eat as healthily as possible, completely avoiding convenience and processed foods. But despite this, he was hospitalised again, a few months later, with a blocked bowel.
A five day stay in hospital and some medication sorted this out; then doctors suggested putting Jeff on a drug called Azathioprine, which helps keep symptoms at bay by suppressing the immune system. But he and Zoe were concerned by the possible side effects which range from a cough and fatigue to shortness of breath and muscle pain. They were also starting to think about having a family, and worried that the drug might impact on Jeff’s fertility – although there’s currently no evidence that this is the case.
‘We decided to look into other ways of managing my Crohn’s,’ says Jeff.
With the help of a nutritionist, Jeff discovered that going on a wheat, dairy sugar and alcohol free diet for short periods at a time helps his symptoms and energy levels – he avoids coffee and monosodium glutamate, which he says aggravate his condition.
He is no longer on any medication but takes aloe vera juice (said to ease digestion), pro-biotics (to restore the good bacteria in the gut) and a herbal supplement called Simba, derived from the African potato plant (said to support the immune system).
Jeff, who has been working on Emmerdale since 2000, doesn’t have much free time, but makes sure he goes running three times a week.
‘It’s a great stress reliever,’ he says.
‘Which is great, because stress is known to make Crohn’s symptoms worse.’
In August 2003, Jeff and Zoe married, and are now the proud parents of Violet, five, and Stan, three. The family live in Leeds.
‘I know Crohn’s has a hereditary link, and of course I’ve thought about the possibility of my children having it’, says Jeff.
‘But I prefer not to dwell on it, and rather think positive.’
‘It took me a while to accept that I had a lifelong condition, and the same illness my mum had,’ says Jeff.
‘But I know that Mum wouldn’t have wanted me to dwell on it, rather to be strong and get on with my life. Now I feel that I manage it well.
‘I’d say to anyone newly diagnosed with Crohn’s: educate yourself about the condition, and understand that although it’s not curable, it is treatable. And then find what works for you.’