I had the honor and great pleasure of being one of about a dozen Canadian IBD advocacy bloggers to be invited to attended the IBD Hall of Fame event held in Toronto on September 10, 2014. This was only my second time in a hotel since my ileostomy surgery last year, and it wasn’t without a few challenges, but things went very well and I’d like to share my experience about the event.
The event was sponsored by Janssen and coordinated by GCI Group. Janssen, is the maker of Remicade, a biological drug used to treat moderate to severe Crohn’s disease and Ulcerative Colitis. Chances are you’ve likely either heard of them before, or you might even be using Remicade yourself.
We were invited to a dinner at Tappo Wine Bar and Restaurant, which is located in the Distillery District in Toronto. The area is beautiful and the weather was perfect. Tappo is an Italian restaurant, and being one, their meals revolved around meat and seafood – a challenge for any vegan to get around. They were able to easily accommodate me and I had a nice pasta dish with cooked veg, mushrooms and rapini, with a side of salad. I had used the restroom only once to empty my pouch and it was relatively easy, partly due to the the regular thickness toilet paper they use… any ostomate will tell you that the ultra-thin, nearly transparent toilet paper you see in so many public restrooms are a HUGE pain in the ass to use (no pun intended), so this was a welcomed change.
Clothing was the biggest challenge for me. Most male ostomates can tell you that they’ve stopped wearing their shirts tucked in after getting their ostomy because it’s too inconvenient and uncomfortable. I don’t think I’ve dressed up in the past 4 years due to being so sick and not having the chance to go any place that required a tucked in shirt, let alone dress up with my ostomy, so I had to get something that would work. I went to my local mall the weekend before the event and tried on a few shirts, initially hoping I could get away with just not tucking it in. Unfortunately, this look wasn’t the look I was hoping for, and I became worried that I’d have no comfortable or practical options. Then I realized that I was using the Coloplast Sensura Click pouching system, which allows me to rotate my pouch horizontally and then lock it in place. Doing that while wearing my Stealth Belt could be a great solution! I didn’t have my Stealth Belt on at the mall, but I was able to rotate my ostomy pouch to at least try some shirt, and it worked well! You can see from the photos below that my pouch is barely noticeable, and with the Stealth Belt on, it was comfortably held in place and didn’t cause any trouble!
I would like to give a shout out to Kyle Taylor who helped me with a few shirts at the store. Interestingly, when I mentioned that I needed help finding something that would work with my ostomy, he knew exactly what an ostomy was, and mentioned that his father-in-law has one too. Kyle is a local photographer in Durham, Ontario, so please check him out if you’re looking for one at www.eyeintrigue.com.
I spent the night at the Cambridge Suites Hotel in the heart of the city. It was a great room, and was beyond what I was expecting. You can see from these photos that I had plenty of space to get comfortable in. I wish this had been a week-long event!
The Main Event
As mentioned before that this event took place at the Hockey Hall of Fame in Toronto, Canada. I’ve probably only been there once, and it was likely during an elementary school trip, but whatever I though I remembered of the place was nowhere near what I experienced: This venue is BEAUTIFUL.
Our group met in the Tim Hortons Theatre Room, and I doubt we could have gotten any more Canadian than that! For those who aren’t familiar, Tim Hortons is a popular coffee shop in Canada (especially Ontario). I don’t drink coffee, but I’d imagine it can’t be that bad! They sell these little balls of sugar glazed doughnuts called “Timbits”, which nearly any Canadian can tell you about. I haven’t had Timbits since I was a teenager, so I can’t say whether they are even vegan or not…. anyway, back to the event!
The list of speakers included Dr. Brian Bressler, a GI who works out of Vancouver; Dr. Mike Evans, a physician based out of Toronto and the driving force behind the brilliant YouTube channel DocMikeEvans; Lindee David from Crohn’s And Colitis Canada, and Leigh Mitchell from the Women in Biz Network . Of course Janssen had several staff who spoke about their role in the company and the the reason for this event.
The aim of the event was to not only share how IBD bloggers can more effectively reaching people with IBD, but also to give feedback and suggestions on how to accommodate patients needs.
Leigh offered some great insight and suggestions on how to better manage social media and recommended a foreword tools we can try.
Dr. Bressler spoke about treatment options, ways to manage our illness, the goals of treatment, and answered any questions we had about treatment. I was extremely impressed to see such an up-to-date GI, who seemed to genuinely care about his patients.
Dr. Mike Evans spoke about how he built such a successful YouTube channel based on accurate, relevant videos to help patients and their families to understand illness, treatments, and many other health related topics. If you’ve never seen his videos, you’re missing out on some highly informative, professional and entertaining content ! I was surprised to hear how much time and effort goes into producing each of his videos, but the end results speak for themselves! An important message he really drove home was to try until you succeed when it comes to getting information out to the public. He told us about some of his previous flops (sorry Dr. Mike!) which ultimately led him to high highly successful and viral YouTube videos.
I was able to speak with both Dr. Bressler and Dr. Evans privately during our breaks, and really enjoyed the insight they were able to give.
Lindee David, who’s the Chief Executive Officer for Crohn’s and Colitis Canada, also had a chance to speak to us. She talked about some exciting new initiatives that the CCC is working on as they shift their strategy away from purely fundraising to things that will benefit people with Crohn’s or Ulcerative Colitis directly in the short and mid-term. Helping to increase access and affordability of proven treatments is one of those goals. It was really great to interact with her and to offer suggestions on what we believe might benefit other people with IBD.
The best part about the event (for me) was the time we were given to brainstorm ideas, more specifically: identifying patient needs; some of the major communication gaps between people with IBD and their doctor(s), family, friends or employer; and also resources and tools we can use and/or offer to those who are faced with IBD. Hearing what other IBD’ers had to say about their experiences in person is something you can’t easily find online. The fact that we were able to express our thoughts and opinions to healthcare professionals, the CCC and a major player in the drug industry made me feel optimistic that positive changes will be coming in the near future to everyone who has IBD.
I met some amazing people, had a wonderful experience, and left with more determination to help the community than ever before!