May 19 is World IBD Day

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Today is World IBD Day – a day to spread awareness about Crohn’s Disease and Ulcerative Colitis the two diseases that are Inflammatory Bowel Diseases (IBD).

For many years, this day would have not resonated with me. But now it does. Very profoundly. We need to do all we can to raise awareness of IBD and how these disease impact so many Canadians and many others living through-out the world. Speaking from personal experience, ulcerative colitis has changed my life. Drastically.

Not a day goes by that I don’t think about ulcerative colitis and wonder if this is a day that I will remain in “remission” or will I end up in a “flare”… because there is no known cause for ulcerative colitis and Crohn’s Disease – there are no known cures. The only options for those of us living with these disease are drugs – and unfortunately the sicker we are, the stronger the drugs with rather severe side effects and related-symptoms.

Too many people have said to me “well, you won’t die from ulcerative colitis” or “at least it’s not cancer” or “it could be worse” or “you don’t look sick”. These are the worst possible things to tell someone like me. The actual truth is I could die from this disease – my bowels could rupture and I could end up very very ill, because I have a very reduced immune system (due to the medication I take) I’m super susceptible to colds, flus, and other viruses that if not careful could turn into pneumonia or other life-threatening infections, my cancer risk is now very high (a side effect of the drugs I’m currently on and the ones I was on), and yes although I run, bike, and look really good – I’m still sick.

I am a sick person. This is a hard thing to live with. But luckily right now (knock on wood) I’m a sick person who is thriving and doing well. Next week – who knows? All I and so many other people with IBD can do is take the day for what it is and make the most of it.

When people ask me about ulcerative colitis and what it’s like, I’m very honest – there is no need to be shy about about what this disease does to me. It is because people don’t want to talk about it that so many people don’t realize how horrible it really is. I never thought that at the age of 41 I would have to wear adult diapers just so I could go out and watch Marc race his cyclo-cross bike. I never thought that I would loose control of my bowels in Loblaws. I never thought that I would have to pack extra pants and underwear with me when going to work – just in case something happened. I never thought I’d go from being a person who used to race a bicycle to being someone who was thrilled to ride a bike for 30 minutes. I never thought that I would get sick.

But this is the way it is. The thing is, I’m one of the lucky ones. I have so many friends living with Crohn’s Disease and ulcerative colitis who can’t do a fraction of the things I do.  And these friend were all people who were “healthy” and lived full lives before getting sick.

Here are some stats about IBD (I copied these from my friend MJ’s blog):

  • There is no cure for IBD.
  • About 1 in 350 people worldwide suffer from IBD.
  • Here in Canada, we have the highest rate with 1 in 150 (about 233,000 people; of this, 129,000 have Crohn’s Disease and 104,000 have Ulcerative Colitis). The lowest rates are in British Columbia, and the highest in Nova Scotia and Québec.
  • The number of people newly diagnosed with Crohn’s Disease is greater than the number of people newly diagnosed with UC. Every year, there are 10,200 new cases of IBD in Canada: 5,700 people with Crohn’s Disease and 4,500 people with UC.
  • The rate of newly diagnosed cases in children is increasing, and is approximately double the rate of adults.
  • IBD can be diagnosed at any age but typical age of onset is people in their 20s. There is a higher frequency of Crohn’s Disease in female adults in Canada, while boys are more commonly affected by IBD than girls in childhood.
  • Genetics is involved in IBD, shown by clustering within families and the identification of several genes which are more common in people with CD.
  • People with IBD face an elevated risk of developing colorectal cancer.
  • People with Crohn’s Disease face a significantly elevated risk of premature death (almost 50% higher) than the general public, due mainly to cancer, cardiovascular disease, respiratory disease, GI diseases, infections, and complications following medical and surgical interventions.
  • IBD is more than twice as common as multiple sclerosis or Parkinson’s disease and about as common as Type I diabetes or epilepsy.
  • Quality of life, career options, sense of self-worth and self-esteem, intimacy and personal freedoms are all significantly affected when someone suffers from Crohn’s Disease or Ulcerative Colitis.
  • IBD is largely a disease of the developed world, with an increase in rates of Crohn’s Disease as a country becomes industrialized.

Thanks for reading this post and remember that if you have any symptoms such as blood in your stools, constant diarrhea, severe stomach cramps and pain, or unexplained weight loss, – don’t ignore these symptoms. These are not symptoms to “tough out” or to “ignore” because you’re too embarrassed to discuss them with your doctor.

Ulcerative colitis has changed my life. Ulcerative colitis has changed Marc’s life. I really would like it not to change anyone else’s life.

 

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