Joanne’s story of living with Crohn’s disease

Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are an established global problem, and Australia has among the highest prevalence in the world1. World IBD Day takes place on 19 May and unites people worldwide in their fight against Crohn's disease and ulcerative colitis

For Joanne, a mother of two, her journey started on a family holiday on the south coast. She first noticed sharp pains in her lower abdomen. The local hospitals first diagnosed her with ovarian cysts and prescribed her with some pain killers. After subsequent tests with her GP, they suspected a bacterial infection. Unfortunately, the treatment with antibiotics did nothing to relieve her symptoms. It wasn’t until an episode at a school event where she collapsed that a gastroenterologist suspected Crohn’s and began treating Joanne with steroids. A few days later, Joanne noticed a red rash on her abdomen. She went straight to hospital and that afternoon was rushed to surgery for a perforated bowel. The surgeons had to remove her ileum and 29cm of her bowel and colon.

For the next 12-18 months, Joanne lived with a colostomy bag, trialled several different medications and had weekly blood tests to ensure that the inflammation was under control.

However, the gastrointestinal symptoms were still bothersome and embarrassing. And these symptoms resulted in considerable psychological impact. “The stoma caused frequent leakage issues,” said Joanne. “I felt so tired and so repulsed by the stoma and I had to change my wardrobe and was very self-conscious when leaving the house.”

Despite the false starts, Joanne is grateful for modern medicine. “I was able to have the stoma reversed,” she said. Joanne then started to build her life back again. “I was able to attend school events, have a coffee with a girlfriend and take a walk and I felt comfortable with visitors, as long as there was a bathroom available.” Joanne is back at work full time and has also taken up volunteering as a class parent. “The things I love doing are now possible,” Joanne said.

Joanne also believes a supportive network is critical in the care of patients with Crohn’s disease. “I had fantastic house nurses,” Joanne said. And despite the additional concern of loss of income as she had to take time off work, Joanne’s family was incredibly supportive.

In light of World IBD Day on 19 May 2020, Joanne welcomes the theme ‘You are not Alone’ by Crohn’s and Colitis Australia. She encourages others in the same predicament to have a positive mindset. You are so much stronger than you think you are and your mindset is key, she says. “It is a completely shitty disease and it demands respect and acknowledgement – you have to treat it. You can’t ignore it.”

  1.  https://www.crohnsandcolitis.com.au/site/wp-content/uploads/National-Action-Plan-FINAL-08-03-2019.pdf


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June 2020