Holidays in the hospital

During my final year of illness with Ulcerative Colitis before I had my surgery to get a permanent colectomy, I was puffed up from steroids and doubled over miserable, living in my robe and forcing a smile as I prepared for the holidays. It’s strange to remember how fatigued I was and how much energy it took me to do the littlest things.  I woke early every morning all amped up on synthetic energy from the steroids.

After several days of extreme pain with cramping and hours either in the bathroom or collapsing into bed,  it became clear that I needed to be hospitalized. My girls were 4 and 5 at the time. It makes me cry now remembering them walking beside my wheelchair as I wore my new Christmas robe. I had stayed home long enough for them to open their presents and could still smell the fresh Barbie smell on the hands of my daughters as held my face and said, “it’s O.K. Mummy”.

Looking back it wasn’t OK. It’s never OK to have small children be fearful of their mother’s well-being and have to sacrifice anything for their parents. It just shouldn’t be that way and as a mother, it causes extreme depression having to miss any moment of your children’s milestones.

This photo was taken when I was hospitalized for a bowel obstruction a few years ago. I cringe when I think of how many times my lovely daughters have walked through my hospital room doors, smiling and loving and wishing we all weren’t there.

My daughters are resilient and they are champions of my wellness but I still wish none of it had to happen. They are 18 and 19 now and we’re approaching Thanksgiving where they’ll come home from college and feast and sleep. I plan to be the healthy host but am careful in the days leading up to any event that causes extra stress. I usually need more rest and have to be very careful what I eat. I get all “chicken and rice” minded and start fearing vegetable trays.

I’m awake right now because I’ve been sick tonight and can’t sleep. I’ll need to rest today and hydrate since I’ve lost more fluid than normal and need to be ready for family happy cozy-ness. I have a my sites on a big family dinner and plan to eat ONE brussel sprout to eliminate the possibility of a blockages. I’ll take small bites and savor the moment of being together.

Bring your mum to school day – ileostomy show and tell

Raising two very active girls while having an ostomy has been challenging – for them, and for me. There were times when it was discouraging and disruptive and sometimes simply irritating for all of us. Despite the many interruptions in our lives over the years, I have to say that my daughters have been supportive beyond belief. I’ve been sick since before they were born, and when they were young and curious, many of the things I was going through were overwhelming and scary. They didn’t understand why I was in the hospital, or why I couldn’t get out of bed or leave the house. They just knew how it affected their lives, and that the disease was forcing us all to make sacrifices.

There are plenty of proud moments as parents, but yesterday was extra special. My daughter Lissy did a presentation in her health class educating her high school classmates about Crohn’s Disease and Ulcerative Colitis. The presentation was comprehensive and then she introduced me to share my personal experiences from when I was suffering with Ulcerative Colitis, and now, my lifestyle issues with a permanent ileostomy.

I shared my story of how I got sick when I was about their age and how it affected my personal life. I answered questions and shared personal stories, then did a little demo on how the adhesive and pouch work in an impromptu “show and tell” session. I showed them the 2008 Colondar that were the first images I ever saw of a healthy looking person with an ostomy. I told them how I am constantly “checking my package” to be sure my seal is secure and how every moment, it is on my mind, regardless of how well I am coping. I told them that their high school hallways would have been terrifying for me when I first got my ostomy, all elbows and fast swinging backpacks, shouldering past one another between classes. In the beginning you think someone’s going to knock it off your body.

As I looked at the class, I remembered being close to their age when I first got sick, when I imagined I could do anything, believing that any dream I had, with effort, I could attain. There have been tremendous setbacks in my life with the pitfalls of health challenges, but I am still as optimistic as ever that my life is limitless. It’s been a long road, but maintaining a sense of humor and positive attitude has been a big part of my success.

The class showed compassion and interest and I really enjoyed being invited in as a speaker.  I was one in a series of other guest speakers that Ms. Ewing brings to share personal stories, some to go with projects, others to expose the class to challenges they wouldn’t otherwise learn about.

This group of students was totally respectful, and for the end of the day, very attentive. I commend Ms. Ewing for creating awareness and these young people will no doubt learn more about life in that health class than anywhere. Some of the faces I recognized from years of living in this community and it was wonderful to see them smiling back at me. I’m uncertain of the challenges that these students face in their lives but I bet if I had individual discussions with them, I would learn a lot. Being a teenager tests your character and all of the skills you need to excel post secondary. Empathy and open minded listening are crucial ones and this class showed me both.

Thanks for listening with grace Class of 2011 (and 2012 :)) It was an honor to share my story with you.