How ulcerative colitis almost killed Robert Redford’s son
23:43 GMT, 12 March 2012
00:59 GMT, 13 March 2012
When James Redford began suffering agonising stomach pain, fevers and weight loss in his teens, he and his family just put it down to a mysterious bug or him being a ‘nervous child’.
For two years, James put up with his symptoms and didn’t visit a doctor. It was only when a TV programme described his problems exactly that he sought help.
His doctor diagnosed ulcerative colitis, a debilitating lifelong disease. James, the son of Hollywood legend Robert Redford, suffered so badly that at one point he had just weeks to live before undergoing two liver transplants to save him.
Support: Hollywood star Robert Redford and son James
James says his father struggled with the experience. ‘He told me that “feeling powerless to help is the worst feeling of all,” and said if he and I could trade places, he would.’
Ulcerative colitis occurs when the immune system attacks the bowel, causing ulceration. This triggers bleeding, diarrhoea, pain, profound fatigue and anaemia. Around 120,000 Britons have the condition — a quarter are diagnosed in childhood, when it is often more severe than if it emerges later, says charity Crohn’s and Colitis UK.
There is no cure, but symptoms are treated with anti-inflammatories. James, diagnosed at 15, was prescribed prednisone, a standard treatment. ‘It was horrible,’ says the film writer and director, now aged 49, recalling the early years of his condition.
40 per cent of people with colitis will require bowel surgery
‘You’re always worried about eating, if it will trigger symptoms and if you’ll have the strength to function. My
parents were anxious to treat it. We tried all kinds of voodoo potions —
when Western medicine doesn’t provide a cure, you turn where you can.
In severe cases, patients may need bowel
surgery. James had another complication — he jokes about the ‘good
fortune’ of the colitis spreading to his liver when he was 25, causing
inflammation known as primary sclerosing cholangitis (PSC).
Robert flew to his son's side when a liver donor match was found
This affects two per cent of ulcerative
colitis sufferers, triggering fever, jaundice and abdominal pain. A
fifth go on to develop bile duct cancer.
Despite the black humour now, at the time James was seriously ill and was told he’d eventually need a liver transplant.
James was 30 when his liver failed. The news came on his wife Kyle’s birthday. ‘She’s the strongest person I’ve ever met, but she was devastated,’ he recalls. James was on the donor organ waiting list for an agonising six months — his skin became yellow and he was in excruciating pain. Finally a match was found and James called his father, then due to start shooting the movie Quiz Show. Robert postponed filming and flew to his son’s side.
But as James reveals: ‘The surgery
didn’t go well. There was a blood clot on the artery to the liver and
the donated organ was damaged irreparably. I was re-hospitalised for
four months waiting for a second chance.
‘I was sick with terrible fevers. By
the time a second organ had been found I was weeks away from going. We
were all fighting to stay positive. My father tried to keep me
entertained, showing me footage from his day to distract me.’ A second
donor organ was found, but James was told there was a one in four chance
he wouldn’t make it.
he did, and three months later he was well enough to write again,
although it took a year to recover fully. ‘There was a long period of
psychological adjustment,’ he says. ‘You go through a lot when you spend
months wondering whether you’re going to live.’
James emerged with an intense feeling of
gratitude, and wanted to give something back to doctors, nurses and
donors. In 1995 he founded the James Redford Institute for Transplant
Awareness, a non-profit U.S. organisation dedicated to educating the
public about organ and tissue donation.
ULCERATIVE COLITIS: THE FACTS
Ulcerative colitis is a long-term (chronic) condition affecting the colon. Symptoms, which include bloody diarrhoea, abdominal pain and weight loss, can range from mild to severe.
The illness causes the colon to become inflamed (swollen) and in some cases, ulcers (painful sores) may form on the lining.
The causes for the condition are unknown, though research suggests that both environmental and genetic factors are involved.
It is uncommon and it is estimated that there are ten new cases a year out of every 100,000 people. There are currently 100,000 people in England with ulcerative colitis.
It normally appears between the ages of 15 and 30 and the outlook for most is quite good as symptoms can usually be controlled using medication.
In the UK, three people die every day waiting for a donor. As a film-maker with screenplay credits including Cowboy Up, starring Kiefer Sutherland, James realised he could increase awareness. One of his documentaries is The Kindness Of Strangers, about those awaiting organs and families who donate organs of loved ones.
Some years after his own transplant he met the mother of the man whose liver he’d received. Her 22-year-old son had died from an asthma attack and she was told his liver had gone to a man from Denver — where James lived at the time.
She guessed who he was after reading reports of a transplant given to the son of an unidentified ‘famous father’ and went to one of his screenings to introduce herself. He recalls: ‘It was an emotional moment for us both. We embraced and, by the time we let go, everyone had left the theatre. We have stayed in touch.’
Now a father of two, James has had to face the heartbreak of watching his own child struggle. Twelve years ago his son Dylan was diagnosed as severely dyslexic. He was ‘functionally illiterate’ at the age of eight. ‘He would practise reading and writing at night but in the morning it wouldn’t be retained. It was distressing for Dylan, and when he was diagnosed neither my wife nor I understood much about dyslexia.’
Their experience might have been less stressful, he says, if they had known what they do now about the disability — and how to boost the self-esteem of a dyslexic child. This has inspired his latest documentary, The D Word: Understanding Dyslexia, which has been bought by HBO. His hope is that it will help children realise dyslexia ‘is not a terrible burden . . . and that in fact there are some gifts that come with it’.
Meanwhile, thanks to twice-daily pills and six-weekly check-ups, James is largely untroubled by colitis. He adds with a laugh: ‘I’m healthy enough to have had more mountain-bike accidents than I should.’
For information, visit thedwordmovie.com and crohnsandcolitis.org.uk