Stopping the stigma and normalising the stoma
Young woman changes discussion around bowel disease.
A young woman in regional South Australia is trying to change the conversation around bowel disease in her local community, after being diagnosed with Ulcerative Colitis.
Riverland resident Aleysha Lange said she was a regular 20-year-old who enjoyed playing netball, reading, hanging out with friends and going to work.
But since her bowel disease diagnosis at age 15, she continued to deal with pain and other challenges on a daily basis.
“This year all the medications and drugs weren’t working so I had to have an ileostomy done,” she said.
“They took most of my large intestine and I have a stoma so the ostomy bag sits over my stoma and it just collects all the stool and stuff like that.
“I’ve been having trouble with leakages, infections and an allergic reaction. Just dealing with that is hard, being 20, having it there.”
Ms Lange said the procedure was reversible but treatments including chemotherapy and medications such as steroids had an impact on her everyday life.
“With steroids I get a puffy face and gain weight, so that affects me because I’m younger, and your looks [seem to mean more],” she said.
She said the stigma attached to bowel disease had an impact on her mental health.
“For a while I kept it secret because I thought, it’s a bowel disease, it’s the ‘gross disease’, basically,” she said.
“But my friends and family were all really supportive and they all know everything and were there for my surgery.”
Ms Lange said although it was Crohn’s and colitis awareness month many people did not know what the conditions were.
She said she would like to see more of an awareness campaign, with a focus on young people.
“I had no idea what colitis was when they diagnosed it. I was just googling to find out more,” she said.
Sarah Jones, a close family friend, has known Ms Lange for as long as she has lived with bowel disease.
“I think it’s hard because we don’t know what she’s going through directly, but just being there for her [is important],” Ms Jones said.
“Because it’s a hidden illness, it’s very hard for people to relate to it because they can’t see it.
“Speaking about anything and bringing awareness helps, so creating networks [especially for young people] would make a change.”
Ms Lange said the more people knew about Crohn’s and colitis the better.
“More awareness [means] it will be easier for people going through it, so they don’t have to do it alone,” she said.