Actor bares her scars of lifesaving surgery to remove large intestine and speaks out on Crohn’s disease
Rebecca Franks, Southern Courier
AFTER a holiday in Vanuatu as a teenager, Sylvia Keays’ entire family was struck down with food poisoning but it turned out the now 33-year-old Coogee actor’s symptoms were far more serious.
With a gastro-type illnesses, extreme fatigue, weight loss and eventually passing blood, Ms Keays’ doctor recommended she had a colonoscopy that revealed she had Crohn’s disease.
With no history of the lifelong and incurable disease in her family, the diagnosis was a shock but doctors said for her it would be mild and manageable with small levels of medication.
Coogee woman Sylvia Keays has suffered with Crohn's disease for 20 years and had to have her large intestine removed in an emergency operation.
“The way it was diagnosed, it did not really hit home how serious it was,” said Ms Keays, who hoped to raise awareness about Crohn’s disease on Friday which is World Inflammatory Bowel Disease Day.
“They also did not know as much about it as they did not.”
For years Ms Keays displayed no symptoms of the disease but it eventually became so severe she needed emergency surgery to remove her large intestine and still bares the scars today.
Australia has one of the highest rates of IBD in the world with one in 250 people affected but currently it is unknown what causes the disease.
While living in America with her family aged 21, Ms Keays started feeling run down and her “body started crashing” which she put down to being overstretched with work and study.
It took several doctors to say it was Crohn’s disease and she flew back to Australia for treatment and the “flare up” lasted about six months.
With regular colonoscopies to check the condition of her bowel, Ms Keays had flare ups every 18 months, sometimes ending up in hospital with bleeding, ulceration of the digestive track, fever and incredibly painful joint aches which at one point left her on crutches.
Her symptoms were managed with steroids and medication but in 2014 she was on stage during a theatre production when she got a “spasmy pain”.
Sylvia Keays still bares the scars from having emergency surgery to remove her large intestine after her symptoms of Crohn’s disease became life threatening. Picture: Dean Preston
“I thought maybe I did not digest food properly as I’d eaten during the interval and it was quite a physical scene but the pain never went away and I ended up in hospital,” Ms Keays said.
“It was the beginning of a perforation in my bowel.”
Over the next year, she continued working and experienced familiar symptoms of exhaustion, pain and weight loss but put it down to stress.
During a routine colonoscopy, her specialist found inflammation in her bowel was so severe and her intestines were “so ruptured” they could not get a camera through and she underwent emergency surgery as her condition was potentially life threatening.
Ms Keays was told she would be in hospital for two weeks but just five days after a resection to remove part of her intestine broke, she was forced to have emergency surgery to take out the rest of her large intestine.
“It was truly horrific, and I have never been in so much pain or felt so frightened in my life,” she said.
“I ended up with a temporary ileostomy bag, and my stay in hospital ended up being six weeks with further medical complications.
“Six months later I had to have another surgery (ileostomy reversal) and thankfully was able to be rid of the bag and my body began functioning somewhat normally again.”
Doctors reassured Ms Keays the disease would not come back as it had been cut away but three months later it had returned.
Sylvia Keays and Blake Wood took part in the Fledgling Theatre Company’s production of Rats at the Old 505 Theatre in Newtown last year.
“It was so disheartening to have gone through all of that, only to have the disease return in another part of my bowel,” she said.
Ms Keays, who is starting up a support group for people with Crohn’s disease in Surry Hills in June, started taking new medication and has been symptom free for a year and a half but recently the familiar pains have returned.
“I want people to know that while Crohn’s disease is an invisible illness, it can be extremely debilitating,” Ms Keays said.
“I can look totally fine on the outside, but be so completely ill on the inside. At my sickest I have even had doctors remark how well I am looking.
“And, when I’m feeling well sometimes even I forget that I have it, but it is a lifelong condition, and needs to be monitored very carefully and factored into every part of life.”
She urged other people with Crohn’s disease to take it extremely seriously, talk to doctors, specialists and other people with the disease and go to support groups.
Professor Terry Bolin, president and founder of the Gut Foundation, said getting diagnosed early on and getting onto a medication that worked effectively was crucial.
“The longer there is inflammation present in the intestine, then the greater the risk of damage to the bowel,” he said.