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Crohn’s sufferer Danielle Schultz speaks up about her illness.


RAISING AWARENESS: Crohn’s disease sufferer, Danielle Schultz, is determined to break the stigma surrounding inflammatory bowel disease by donating ostomy teddy bears to children in need.  

Grace Griffith

 

INFLAMMATORY bowel disease, or IBD, is an invisible disability, and it’s on the rise.

This incurable and painful illness is a chronic inflammatory disease of the intestines and comes in two forms: Crohn’s or ulcerative colitis. 

In Australia, IBD is becoming more prevalent, more complex, and more severe.

According to Crohn’s and Colitis Australia, it affects approximately one in 250 people aged five to 40.

Now, almost 75,000 Australians have Crohn’s disease or ulcerative colitis, with this number projected to increase to 100,000 by 2022.

It can be a diagnosis that can turn someone’s life upside down.

“It can be daunting, and embarrassing,” Danielle Schultz, a local Crohn’s suffer confided.

Embarrassing because the condition, when in an active stage, can cause severe irritation to the bowels and demands frequent toilet stops.

Regardless, Danielle is speaking up about her experiences to raise awareness of the often shielded subject.

While she was diagnosed in 2012, Danielle suffered with the condition for 10 years prior.

“I lost 80 kilograms in one year. I was really quite sick,” she said.

Eventually, she was recommended to have a colonoscopy.

 “It can be really hard to diagnose without a colonoscopy,” she said.

 “It’s not an easy disease to see: it masks itself in so many ways.”

The sinister sickness is also responsible for more.

“It attacks your immune system, your stomach, eyes and joints, not just your intestines,” she said.

“I know when I’m going to get a flare up because I get a stye under my eye.”

Another exasperating aspect of the disease is its unpredictability.

“With Crohn’s, what I eat today won’t trigger me, but it will tomorrow,” she said.

“Stress is also a massive trigger and changes in hormones.”

Following her diagnosis, Danielle has been on medication continuously to minimise the effects of the condition and has worked on managing stress levels.

However, adhesion of her bowel to other organs – another side effect of the illness – now means she is incontinent. 

A colostomy bag is the next step in her journey.

“Getting that kind of information is not easy to deal with,” she said.

“But you have your cry and wallow, and then you get on with it.”

Despite her painful and sometimes debilitating condition, Danielle is working, keeping herself busy, and doing the things she loves: reading, cooking and spending time with her family.

And if you met her without knowledge of her condition, you’d never expect her to be a sufferer.

With a smiling face and a positive attitude, she doesn’t strike you as someone who lives with this condition every day.

But getting on with life comes at a price.

“It cost me $12,000 a year for medication for my illness,” she said.

“One steroid is $135 a month.

“I’m putting together a petition for our Federal Government for a health care card to help with costs.”

Danielle also creates a yearly IBD calendar which all profit going directly back into IBD clinics.

That’s not all; she recently published a cook book and is putting aside $10 from every purchase to buy teddy bears with ostomy bags for children with the disease.

Aimed at being an educational tool and companion for children, the bears also help reduce the stigma attached to the disease and an ostomy bag. 

Short URL: http://thestar.com.au/?p=29666

Posted by on Jul 30 2019. Filed under Featured, News. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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