Often confused with IBS (Irritable Bowel Syndrome), Inflammatory Bowel Disease (IBD), instead jointly describes two chronic health conditions that cause inflammation of the small and/or large bowel – Ulcerative colitis, and Crohn’s disease.
The effects and impacts on people living with IBD differ significantly from person to person, but many now choose to embrace online story-telling via blogs, websites and social media – powerful ways of sharing information, reducing social isolation, personally managing their condition, publicly supporting others affected, and raising awareness in the broader community.
To promote and raise awareness ahead of World Inflammatory Bowel Disease Day on May 19 2016, and to further their mission of‘Helping Australians with their digestive health’ -The Gut Foundation has partnered with people from rural and urban areas of Australia for a story-telling campaign that supports, showcases and encourages the sharing of personal experiences by people living with IBD: people like Nigel, Kristie, Michelle and her son Callum, and Krystal.
For Nigel – a busy farmer and father reliant on excellent health and physical strength to work seven days a week to earn his living from the land – losing “ten kilos in ten weeks” due to IBD proved challenging both personally and financially. A straight-talking country man, his advice is simple,“If your symptoms don’t go away, make sure you get yourself checked out.“
After seeking professional medical advice and successfully commencing specific treatment thankfully Nigel can also share that – “Now that I’m on the right mix of medication for me, there is nothing I can’t do now that I used to do before.”
For Kristie,the most challenging part about IBD is “feeling isolated and that the people around you don’t understand how you feel.“ Her diagnosis, “…opened up a world I didn’t know much about...a reality of medication management, lifestyle considerations, energy conservation and compromise.”
Despite these changes, support from people who know little about IBD – and the peer support of people also living with similar challenges – help enable Kristie,“to laugh in the face of this disease.”
Undiagnosed from 17 years old, when symptoms first appeared, until pregnancy at 24, Michelle Lee knows firsthand the pain and discomfort of IBD – “Before this it was thought to be IBS so I was told to go on a high fibre diet – which only made things worse.”
Further procedures provided some relief, but later Michelle’s health plummeted again,the disruption and embarrassment of IBD negatively impacting her professional career.
Adopting a new treatment regime suggested by her healthcare professional, things shifted, ended “years of frequent disruptive visits to the bathroom, pain, vomiting and invasive surgeries.” Michelle’s pain, inconvenience and toilet-dependence decreased so such that she now happily says, “I now have a great job, travel a lot and enjoy life.”
But Michelle’s story doesn’t end there. Her son Callum –now a teenager – experienced unusual pain, sickness and impeded growth as a child. Michelle was initially racked with guilt and sadness when scans, a colonoscopy and an endoscopy confirmed that her son – like her – suffered from IBD.
Their shared condition and close relationship, however,also enables mutual support. As Michelle says:“It’s hard for me, as a parent, to watch him go through pain – I understand it’s a lot harder when you’re a teenager. I’m proud of my son for rising above this illness, and for showing me that this condition won’t and can’t stop him from living a full life.”
A courageous, outspoken advocate for those affected, young mother of two Krystal uses the visual power of photography, accessibility of blogging and popularity of social networking websites to share her personal, passionate and intimate feelings and fears about living with IBD – “Only recently I’ve been able to feel connected… It’s only recent that I found a group that I feel share my feelings... I even thought I couldn’t talk to others because they weren’t me. But then I talked…And talked and talked some more...all of a sudden I’m connected to 22,000 people who feel exactly like me.I may be alone in my head at times but I’m not alone in the world, and neither are you.”
- Living with IBD may involve you making lifestyle adjustments, but should not stop you from leading a fulfilling, productive and happy life.
- Between bouts of the disease, most people feel well. While IBD may require lifestyle adjustments, it should not a barrier to marriage, sexual activity, having children, caring for a family, enjoying sport or other recreational activities.
- Coping with IBD requires you to keep it under control, to do this you need to take your medication and make positive lifestyle changes.