Early Diagnosis and Public Awareness of Crohn's and Ulcerative Colitis Critical to Patient Care

TORONTO, Nov. 1, 2011 /CNW/ - Imagine experiencing agonizing and debilitating pain that lasts for hours, months and even a year without a Doctor or Medical Practitioner being able to diagnose the cause. Imagine having up to 20 bowel movements, or false "urges" a day, yet still remaining undiagnosed. Imagine the impact on your work, the depression and anxiety that can result during an active flare of inflammatory bowel disease (IBD). These are just a few of the painful revelations that have been revealed in a recent survey of Canadians living with IBD, carried out by the Crohn's and Colitis Foundation of Canada (CCFC).

The survey, which polled more than 500 IBD sufferers during the fall of 2011, found 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.

  • 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.

Inflammatory bowel disease is comprised of Crohn's disease and ulcerative colitis: two similar, yet distinct, conditions which cause intestinal tissue to become inflamed, form sores and bleed easily. Both Crohn's and colitis can flare up (an acute attack) at unpredictable times, and flare-up can last from days to months at a time.

During a flare-up, patients suffer from symptoms including abdominal pain, cramping, fatigue, frequent and urgent diarrhea and bloody stools. Additional symptoms include nausea, bloating, anaemia, joint pain, canker sores in the mouth, skin and eye irritations and weight loss.

More than 200,000 Canadians - an estimated one in 160 - live with IBD. More common than Multiple Sclerosis or HIV and about as common as Epilepsy, Canada has among the highest rates of Crohn's disease and ulcerative colitis in the world and there is no cure, no known cause, and little public understanding of the pain, chronic suffering and isolation IBD patients courageously cope with every day of their lives. The cost to Canada's economy is on average more than $9,000 per year per patient.

"November is Crohn's and Colitis Awareness Month and we want to help more individuals and Medical Practitioners identify Crohn's and colitis symptoms earlier," says Dr. Kevin Glasgow, CCFC's Chief Executive Officer. "People living with IBD too often face their conditions in silence and we want to encourage patients to speak up about their symptoms so that we can work towards quicker diagnosis times and earlier treatment."

Crohn's & Colitis: Common Diseases, Few Speak about Them
While the search for a cure continues, many patients continue to face their conditions in silence, afraid to venture away from home, cutting off the possibility of many great experiences.

  • 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.

Perhaps most troubling, is the impact of IBD on youth. Sadly, an overwhelming majority of youth patients have missed out on sports activities, have had an embarrassing accident at school and have fallen behind in their education due to their disease.

"Canada is home to many of the world leaders in IBD research, and IBD affects millions world-wide," adds Dr. Glasgow. "I encourage every Canadian to Get Gutsy this November by learning about IBD and realizing that together we can make a positive difference in the lives of many thousands of Canadians."

Get the Facts: IBD 101
Crohn's disease cannot be cured by drugs or surgery, although both are proving to be helpful in relieving symptoms such as abdominal pain, cramping, fatigue and frequent urgent diarrhea. To help reduce the feeling of isolation experienced by people living with IBD and to help raise awareness about this chronic disease, the CCFC urges Canadians to familiarize themselves with the burden of IBD and its symptoms.

  • Crohn's disease and ulcerative colitis are the two most common forms of IBD;
  • Most people are diagnosed by the age of 30, and many will experience periods of remission and flare-ups, often requiring long-term medication, hospitalization or surgery;
  • The main difference between Crohn's disease and ulcerative colitis is that Crohn's can affect any part of the gastrointestinal tract, from the mouth to the anus, causing patches of inflammation. Colitis affects only the inner layer of the colon, or large bowel, and always starts in the rectum causing continuous inflammation which may spread into the rest of the colon;
  • Ulcerative colitis can be completely eliminated by surgically removing parts of the colon, but after surgery waste materials may have to be stored and expelled through an external appliance such as a colostomy bag;

If you, or anyone you know is experiencing IBD symptoms, please consult with your medical physician immediately.

Get Gutsy: November is Crohn's and Colitis Awareness Month
Throughout the month, the CCFC will celebrate the courage of Canadians living with these debilitating diseases through a number of announcements and programs, including:

  • Winners of the fourth-annual Gutsiest Canadians contest;
  • The CCFC & You Education Symposium series, occurring in 16 locations this November;
  • A series of ulcerative colitis webinars co-hosted by Shire Canada and CCFC, featuring noted gastroenterologists Dr. Hillary Steinhart and Dr. Guy Aumais;
  • CCFC is hosting its first national conference on clinical issues and research related to IBD called: "Canada Future Directions in IBD" on November 5 and 6;
  • Details for all Crohn's and Colitis Awareness Month activities are online at www.getgutsymonth.ca, as well as full Impacts of IBD survey results;
  • Can't Wait, an iPhone and Android application that helps people find the public bathroom closest to them in a hurry.

About the CCFC

  • The Crohn's and Colitis Foundation of Canada is a volunteer-based registered charity dedicated to finding the cure for Crohn's disease and ulcerative colitis, commonly referred to as inflammatory bowel disease.
  • The Foundation is committed to educating IBD patients, their families, health professionals and the general public about the diseases.
  • Since its founding, CCFC has invested more than $71 million in IBD research, making the foundation a world leader in non-governmental funding of IBD research.
  • Canadian researchers funded by CCFC are conducting cutting edge research and are sustaining the hope for a cure worldwide.

For more information about CCFC, please visit www.ccfc.ca, for more information on Crohn's and Colitis Awareness month, please visit www.getgutsymonth.com.

The CCFC Impacts of IBD survey was carried out online amongst a nationally representative sample of just over 500 Canadians aged 18+.

In addition to CCFC's professional staff, CCFC has committed volunteers and members across Canada who are willing to speak with media about their experience with IBD. If you would like to speak with one of our volunteers, or for more information, please contact Ive Balins or Adriana Lurz at Strategic Objectives.

SOURCE Crohn's and Colitis Foundation of Canada (CCFC)

For further information:

Tel: (416) 366-7735.  Fax: (416) 366-2295. Email: ibalins@strategicobjectives.com.

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Crohn's and Colitis Foundation of Canada (CCFC)

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