Here's my personal nightmare:
I was diagnosed with Crohn's Disease (ileitis) in early 1992 after a long diagnosis process. The first time I remember having symptoms was in Grade 5 when my teacher noticed that I was holding my stomach in pain. The rest is, well, a barrage of tests (did you know how many orafices can have tubes inserted into them? Wow. It's an unpleasant early morning surprise), incorrect diagnosis and something I wouldn't wish on anyone.
If you don't know what Crohn's Disease is, here's the description. No known cause, no known cure, lots of pain, weird rashes, an immune system that can't tell an ass from an elbow, rather embarrassing toilet situations, and I poop lots.
Most sad is that Crohn's is called a young person's disease. It is usually diagnosed in kids - just when adolescence and the teen years are about to make their lives complicated enough, this disease makes life so much more difficult. The pain, risk of serious complications, and health problems are devastating for these kids and their families, especially during a time when being normal is so important psychologically.
I volunteer with the Crohn's and Colitis Society of Canada because, well, I have Crohn's so it seemed that that's why I should volunteer with CCFC. Now, working with such fabulous people who have so much fun raising money and in general smiling so big, ya can't help but love being around them! I look forward to events - I'm really fond of wearing bright orange during the M&M BBQ. If you're interested in more information about IBD, how you can volunteer, or if you'd like to attend one of the many fundraising events (buy a burger at the nationwide bbq day, golf, attend a gala, buy some swag, etc), check out the CCFC's
new website - you can also check what's happening in YOUR city specifically. If you're one of the assholes that were so very cruel when I was so sick during diagnosis, donate money and lots of it and maybe you won't go to hell. :)
These links and commentary are
from a great site “IBD Answers” (http://www.ibdanswers.com):
The IBD Quilt Project - Here's an interesting link. A project dedicated to creating public awareness of Ulcerative Colitis and Crohn's Disease through the display of the IBD Quilt panels and to provide IBD patients, their families and/or friends a creative outlet to express their thoughts and experiences of living with a chronic disease. Cool!
Zone - Crohn's Zone is
a friendly interactive community for people with Crohn's
disease and ulcerative colitis, collectively known as inflammatory bowel
disease (IBD). They're a free membership community group based in the UK. They offer
free IBD discussion forums, chat room, personal stories, articles, online IBD
journals by members, games, IBD book reviews, weblinks, and penpals section.
About.com - I really like the Crohn's site at About.com.
There is a good deal of great content and links to other great IBD sites. The
site is called "Irritable Bowel/Crohn's
Disease" which is weird to me as, although IBS and IBD share some
symptoms, they are quite different. Also, although Ulcerative Colitis is not in
the title, there is some content on that as well. At any rate, it's a site
Teens With Crohn's Disease Website - This site focuses on the problems of Teens with IBD. I especially liked the "Experiences, Stories, and Advice" section. There's also a fairly extensive recipe section.
Crohns-Sanity.org - I found this site interesting. Lots of good basic
information and many personal stories from Crohn's patients.
Crohn's Disease web site - This is an interesting site. I especially liked the Crohn's
humor and Patient's stories sections
HealingWell.com - A pretty good resource center for IBD patients.
Crohn’s & Colitis
Foundation of Canada (CCFC) – the CCFC coordinates research, education, support, and
fundraising. They rock!
Crohn's and Colitis Foundation of America (CCFA)- In the USA, the CCFA does a great job of coordinating research, education, support groups and fundraising. Their site is a wealth of information on IBD.
IBD Sucks - A great site for the comprehensive forums. The site hosts a very
active community with forums on just about every IBD-related topice you could think of.