Carly -- Climb the Himalayas

Being 17 years old, it is hard to imagine that I have had "Trouble" since I was nine.

Who is Trouble? It's my ileostomy (nicknamed by my nurse and me), the direct result of a serious case of ulcerative colitis.

There is no denying that living with Trouble was an adjustment, but is it really trouble? No, it's not. It gave me my life back! Truly... it saved my live.

Being in McMaster Children's Hospital for over 6 weeks, and getting six blood transfusions to replace blood I was losing from the other end, plus way too many needles and lots of medicine, showed that I wasn't getting any better. So, the option of removing my entire large bowel became very real.

Photo: Carly after her ileostomy in 2003

Even though I was only nine, I fully understood the implications of surgery. And I absolutely wanted out of the hospital, and to not have to take so many drugs.

So how do you live without your large intestine? That's where the ileostomy comes in — I don't go to the bathroom like you do anymore.

The cut end of my small bowel was pulled though an incision in my abdomen, then cuffed and stitched to the outside of my body to form a stoma. My wastes leave my body on their own, through this opening, and go into a plastic pouch (bag) that is taped to the outside of my body near my stomach area.

Proper care, maintenance, and good skin hygiene are important with all types ostomies. For those with no large intestine, drinking lots and not short-changing yourself on salt are very simple "must do's" to follow, because dehydration can happen very easily.

Photo: Carly doing ballet in 2009

I know a few people who are avoiding surgery, because they can't imagine what life would be like with a pouch. But I can't imagine what my life would be like without my ostomy! "Trouble" has improved my quality of life, allowed me to be a regular kid, and given me courage to take on challenges and opportunities.

I'm in Grade 12 in Norfolk County and, despite my ostomy, I:

  • babysit for friends and family, work up to 20 hours a week at our local grocery store, and maintain an 80+ average at school
  • was a cheerleader in Grades 9 and 10, have taken ballet lessons for 12 years, and enjoy outdoor activities like kayaking, cycling, and walking on our local beach
  • have volunteered at the annual M&M Barbeque for Crohn's and Colitis for seven years, and was a guest speaker at the 40th Anniversary celebration for the Hamilton & District Ostomy Association
  • travelled to Wales as a Rotary Exchange Student, and attended Easter Seals' Ostomy Camp at Camp Horizon, in Alberta, for seven years
  • help mentor kids who are facing ostomy surgery at Mac Kids

Photo: Carly after her ileostomy in 2003

From personal experience, I know that many people with intestinal disease or an ostomy choose to keep it private... just like I did until recently. Mentoring children who are facing this life-altering surgery, and attending Ostomy Camp have helped me become stronger.

But what got me to "come out of the bathroom," so to speak, and talk publicly about my health issues? Well, it was a challenge from a charitable group in British Columbia called IDEAS (the Intestinal Disease Education and Awareness Society). Their challenge was for a small group of individuals with IBD and some type of ostomy to trek to the base camp of Mount Everest, to show that IBD shouldn't stop anyone. And it didn't stop me!

Photo: Carly at Mount Everest Base Camp

The scariest part of accepting the IDEAS challenge was that the two worlds I live in would collide. Let's face it, we just don't talk about going to the toilet. I always had my secret ostomy world of friends... just as I have all my friends at school. But I did it, as you can see from the photo!

True... being sick is not nice for anyone, but by helping and sharing my story with others, I hope to inspire everyone with IBD to become stronger and to continue to pass the message along.

Who knows? Some form of ostomy surgery for IBD may be in the cards for you. But one way or another, intestinal disease and ostomy surgery are not the barriers to living a great life that many people believe them to be.

Be patient with yourself in the down times — and never stop believing in yourself and what you can do if you put your mind to it!