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Impact of IBD Survey

Survey results

CCFC’s Impacts of IBD survey polled more than 500 IBD sufferers during the fall of 2011, and revealed that early diagnosis is key to ensuring less suffering and better long-term health for the estimated one in 160 Canadians living with Crohn’s or colitis. In addition, lack of awareness about IBD among both the public and medical profession, has resulted in lengthy diagnosis waiting times.

Key survey findings include:
• An overwhelming 71 per cent of respondents waited for more than six months for a diagnosis after experiencing symptoms;
• Nearly half of respondents (45 per cent) waited for more than one year for a diagnosis;
• The majority of respondents (62 per cent) expressed that early diagnosis would have benefited their overall long term health.

Before being diagnosed with IBD, respondents were told by a medical professional that they were likely experiencing the following:
• Eating disorder – 14 per cent
• Mental disorder (“it’s all in your head”) – 23 per cent
• Irritable bowel syndrome – 48 per cent
• Parasite – 19 per cent
• Food allergies – 30 per cent
• Other – 41 per cent (included in “other” were cancer and pregnancy)

Additional survey findings:
• During an active flare-up of the disease, 86 per cent of sufferers have more than five bowel movements or “false urges” a day, and 14 per cent of those have more than 20 per day;
• During an active flare-up of the disease, 44 per cent of sufferers described their pain as agonizing and debilitating or steady pain that lasts for hours;
• 72 per cent of those surveyed had been hospitalized for their IBD and of those, 55 per cent required surgery;
• 39 per cent of those who had surgery required an ostomy, meaning they excrete waste into a bag though a hole in their stomachs;
• 64 per cent say having IBD has influenced their choice of career;
• 50 per cent have left or lost a job at least in part due to having IBD;
• 61 per cent felt having IBD has held them back from advancing in their careers;
• 66 per cent experienced depression and anxiety during an active flare of their disease.
• 44 per cent have had an accident in public because they couldn’t get to a bathroom in time.
• 89 per cent of people who had IBD as children feel they could have achieved more at school if they did not have the disease;
• 80 per cent of people who had IBD as children missed out on sports and activities as a child, and feel now they are less fit than their peers due to their IBD;
• 81 per cent of people who had IBD as children had an accident at school that caused them shame or embarrassment.
• 69 per cent of people who had IBD when they were young were delayed in completing their post-secondary education due to their disease.

Our recent Impacts of IBD Survey also revealed the following regarding the medications required to treat IBD:
• More than 90 per cent of patients experience some kind of adverse side effect from their medications;
• 60 per cent of patients got a “puffy face” from medications (common to steroids);
• 65 per cent of patients experience mood swings (common to steroids);
• 74 per cent of patients experience low energy.

Because Crohn’s and colitis are autoimmune diseases, people living with IBD also frequently suffer additional medical problems in addition to active IBD:
• Joint pain – 72 per cent
• Skin problems – 42 per cent
• Eye inflammation – 23 per cent

Equally troubling, IBD takes a toll on one’s mental health. 66 per cent of those surveyed had experienced depression and anxiety during an active flare of their disease.
People with IBD also encounter many social situations where their disease sets them apart:
• 56 per cent frequently are unable to eat the same food as others at family and social occasions
• 54 per cent have required bowel rest (tube feeding, intravenous nutrition or liquid diet)
• Of those who have required bowel rest, 67 per cent cut out solid foods for two weeks or longer, and 24 per cent cut out solid foods for more than a month.

Gastroenterologists have long known about the many complications and impacts of living with IBD.  For example:
• If you have Crohn’s disease, your life expectancy is two to three years less than someone without the disease.
• People with IBD have an increased chance of developing colorectal cancer, correlating with the length of time they have had the disease. The probability of a person developing colorectal cancer after having IBD for 10 years is two per cent. After that, risk continues to rise and is as high as 18 per cent after 30 years.
• Side effects of the various IBD medications range from decreased fertility to an increased risk of lymphatic cancer.
• Women who have had surgery for their IBD may not be able to conceive.
• Due to the diseased intestinal tract’s failure to absorb nutrients, children with Crohn’s disease are usually smaller than their peers, which can have an impact on their social lives.
• One of the side effects of Crohn’s disease is mouth ulcers, which are painful and make it difficult to smile.