Incurable disease causing agony

Launceston woman Jacinda Turner, who suffers from idiopathic gastroparesis. Picture:Paul Scambler
Launceston woman Jacinda Turner, who suffers from idiopathic gastroparesis. Picture:Paul Scambler

IMAGINE never being able to taste your favourite home-cooked meal or have a refreshing glass of cold water on a hot summer’s day.

This is the reality for 32-year-old Launceston woman Jacinda Turner, who has not eaten since May 2015.

In July 2015, just two months after starting her dream job as a nurse at Calvary Hospital, she fell ill with what she believed was a stomach virus.

‘‘[The symptoms were] nausea, fatigue, a lot of pain, sleeping all the time which is part of the fatigue, and bloating, loss of appetite, weight loss,’’ Ms Turner said.

A gastric emptying study showed 92 per cent of what she ate stayed in her body for more than four hours, with the rest emptying into her intestines – the diagnosis: idiopathic gastroparesis.

Gastroparesis, also known as delayed gastric emptying, affects the functioning of the stomach muscles, inhibiting movement of food from the stomach to the small intestine.

Ms Turner is only one of eight known people in Northern Tasmania to have the disease, with only a few in diagnosed with idiopathic gastroparesis – meaning the cause is unknown to doctors.

Unable to eat a meal or drink a glass of water, Ms Turner got her fluids and nutrients through a feeding tube directly into her stomach, which she was hooked up to 22 hours a day.

‘‘Sometimes I cannot even tolerate that because the nausea and everything intensifies, it makes me feel really, really crook,’’ Ms Turner said.

‘‘If I have more than a sip [of fluid] I’m just violently, violently ill and I pay for it the next day.

‘‘The bloating, the pain and the nausea just goes up.’’

Ms Turner said she lost 32 kilograms since January 2015, and now weighs only 59 kilograms.

When she first went to the hospital to be assessed, they suggested she may have an eating disorder.

‘‘I thought there’s no way, I like my food too much and I wouldn’t put myself through it, but it’s one of those things that they have to assess anyway.’’

One of the issues of living with the disease was it was often ‘‘invisible’’ to others, Ms Turner said.

‘‘People say, you don’t look sick, but inside you feel really crook,’’ she said.

‘‘I’ve been judged for not eating, [people said] ’What’s wrong with you? Why can’t you eat? Have you got a problem’ and all of that,’’ Ms Turner said.

Ms Turner’s father Dennis Turner said he wanted to raise awareness of the disease as there was still no cure.

‘‘We need people to know that it could strike anybody,’’ Mr Turner said.

‘‘All the information from the doctors we’ve gone to [said the disease primarily affects] women in their 30s.’’

Ms Turner said she remained positive in the hope she’d one day walk hospital corridors again, this time as a nurse.

There will be a meeting of people living with gastroparesis on Saturday, February 20, at 2.30pm at Summerhill Baptist Church Hall, 87 Stanley Street, Summerhill.