Dionne, now 25, was diagnosed with Crohn's disease when she was just 14 years of age and lives with mum Cassandra who provides care and support to her daughter.

Cassandra said the diagnosis was made a lot easier by the fact they were lucky enough to have a GP who "was on the ball".

"That is actually a rarity," she said of the doctor's help with the diagnosis.

"Looking back now and seeing how people are diagnosed it usually takes a long time because the doctors aren't aware of all the symptoms.

"In our instance we were very lucky and when things weren't settling down, she immediately got us a referral to a specialist."

They were then able to get an appointment with a gastroenterologist within about three weeks when a formal diagnosis would be made.

Dionne echoed how important it was for an early diagnosis to be made, but added that extra support was not always available.

"In the early years of my diagnosis, I struggled to find additional support outside of my gastroenterologist," she said.

"To assist in malnutrition and weight management the local paediatric dietitian seemed to not understand the impact of active disease on my intake.

"Having access to clear and concise information regarding all aspects of IBD is crucial, which is inclusive of diagnosis, medical team, medical treatments, outcomes, what to expect living with IBD and even patient experiences.

"Additionally, multiple avenues of support are necessary including online, and face to face."

Crohn's disease and ulcerative colitis are the two most common types of IBD. While people are primarily diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life.

"It's one of those invisible diseases. You can look good, feel good but if you ever saw the pictures of somebody's colonoscopy you'd be horrified," Cassandra said.

"It stops people from working because the typical symptoms are a frequent and urgent need to go to the toilet. Diarrhoea, bleeding and loss of appetite, swollen joints, fatigue, there's all sought of associated side effects."

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In addition to accessible information about the disease, early IBD diagnosis and treatment by a multidisciplinary team of healthcare professionals - ideally including a GP, gastroenterologist, IBD nurse, dietitian and psychologist - can greatly improve the lives of those living with these chronic illnesses, as well as reduce the need for surgery and hospitalisations.

Cassandra, from Orange, in NSW's Central West, said hospital emergency departments also required further training in IBD presentations.

"The first thing is GP awareness of symptoms of IBD, Crohn's and Colitis," she added.

"That is the first thing because the sooner you can have a diagnosis, the sooner you can start treatment which equals better outcomes for the patient."