Life with IBD: surgery, hospital visits, mental health impacts and up to 30 toilet stops a day

Jessica is a 31-year-old Kellyville resident who is living with Crohn’s disease.

An emotionally-charged seminar about inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis has provided hope, information and advice for local patients battling the conditions.

The full-house event at Blacktown Hospital attracted more than 160 people who heard stories from people living with the debilitating and incurable conditions.

IBD is a term for several chronic, gastrointestinal conditions that are rising in prevalence in children and adults, causing symptoms including abdominal pain, diarrhoea, internal bleeding, fever and fatigue.

Blacktown Hospital patient Jessica (surname withheld) from Kellyville spoke at the event about her battle with Crohn’s disease for six years.

“I’ve had around 15 surgeries over the last six years and two major surgeries” Jessica said. 

“I’ve had to cancel holidays because I needed emergency treatment. The last time I cancelled a holiday I ended up in hospital having part of my bowel removed.

Lauren Goldsworthy from Chron’s and Colitis Australia at the Blacktown Hospital seminar this week.

“If I waited any longer, my bowel would have burst and I probably would have died.

“My condition is very complex – I have several appointments and tests to manage my condition. On a lot of levels it is similar to cancer treatment, I’m treated in the same ward and I get infusions.

“I’ve had to emotionally adjust over the last few years, but I’ve come to the realisation that I just want to be stable with my life and control the pain.”

Blacktown Hospital gastroenterologist Dr Viraj Kariyawasam wants people to start taking the disease seriously, with the number of people impacted rapidly rising.

“At Blacktown Hospital we are seeing 350 patients a year and this number is rising. More than 4,500 people in western Sydney are affected,” Dr Kariyawasam said.

“These patients have to deal with hospital visits, multiple CT scans, infusions, surgeries and not to mention the mental health impacts.

“I know a patient who has had 24 CT scans in the space of five years.”

Viraj said people often shy away from talking about their condition due to embarrassment.

“People often feel embarrassed because they go to the toilet 20 or 30 times a day,” Viraj said.

“They sometimes wake up at night and go to the toilet up to ten times. It’s a horrible disease.” 

Viraj thanked everyone who attended the seminar at Blacktown Hospital.

“Everyone was enthusiastic and wanted access to our services and clinical trials at Blacktown Hospital,”  Viraj said.

“There are only four biological agents available to treat Crohn’s disease and for people like Jessica, she is on the last one.

“Thank you to the patients for sharing their stories, it’s time to put IBD on the map.”

Blacktown Hospital IBD service started in 2014 and has grown over the last five years to now managing more than 200 complex patients who suffer from Crohn’s disease and ulcerative colitis.

The service runs three consultant-led outpatient clinics each month, providing expert advice on inpatient care and a twice-weekly biologic infusion clinic.   For further information about Blacktown Hospital’s IBD clinic, please email WSLHD-IBDHelplineBT@health.nsw.gov.au