03 Oct Happy Canadian World Ostomy Day and 1 Year Anniversary!
One year ago today Uncover Ostomy was born.
Launched on Canadian World Ostomy Day 2009, UO was a project aimed to spread awareness and break down the social stigmas surrounding ostomies.
It was an idea I had come up with for a grade 12 media project that inspired an organization to take it on. I had met Robert Hill, the founder of IDEAS, at ostomy camp back in 2007 after my project had been done and marked [ a mark that was a lot lower than I had expected.] Rob said he loved the idea and wanted to make it a reality. From there, he, myself, and John O’Shaughnessy began to work together to put this project together.
Two summers ago, I flew to Vancouver to do the photoshoot for this project while having several discussions with both Rob and John on what Uncover Ostomy should be.
“It should be about discussion, about breaking social stigmas, about knowing that having an ostomy isn’t anything to be ashamed of. “
Together, the three of us along with countless others who joined the team, worked to create this project and make it just that.
Since one year ago, Uncover Ostomy has garnered over 23,000 unique visitors to the website, over 2,400 facebook fans, and countless emails proclaiming joy that this site existed. While the journey isn’t even close to over, I think we’ve done pretty well so far.
On that note, I feel like there may be time for a change.
I myself have been seriously thinking about turning Uncover Ostomy into more of a show and less of a blog. Reading is great but I know that, especially online, you can only stare at words for so long. There are often times I blog and leave out many important details because I know it would be too much to read. I realize that my idea requires money and support, which is harder to come across than you’d think, so as of now, it is simply an idea that I am working on.
I also know that John and Rob and I have been discussing another idea, [a kind of really cool idea] based on other people showing their ostomies. I won’t go into much detail yet, as I’m going to blog about it as a whole.. but I think it could be pretty cool.
Other than that, I am still looking for ideas on how to enhance Uncover Ostomy. A year later I think it deserves something fresh, something new, something exciting.
So I’m going to ask all of you. What do you wish Uncover Ostomy had? What do you wish I spoke about more? What would you change? We’re listening, so please tell us what you think!
I also want to take this opportunity to thank everyone who has read my blogs, kept up with the fanpage, and told others about the site. Without your support, the ostomy could still have been that scary thing no one wants to talk about.
This is all because of you <3
Sandra
Posted at 09:21h, 04 OctoberWell I have admit I don't read the blog regularly as I just don't have the time. But there are some things that I think you have done well and that could be expanded on. First off the age thing, I was 33 when I got my stoma (back in 2005) but it was something that was coming since I was 26 (Crohn's disease). Damn near all the information that you get, and can find, and pictures (the pictures I think are absolutely the most important aspect!) you see are very much elderly patients that have had colon cancer. It is discussed as something that people have when they have colon cancer, and almost nothing else. Some people are very confused that you can 'end up with an ostomy' without having had cancer.
The second thing is the life altering aspect. I seriously cannot think of anything in my life which has gotten worse since the ostomy! I am healthier, in less pain, and able to enjoy things that would have been impossible before the surgery. I love the pictures of people who are not in track suits!! I would be totally willing to contribute some photos of me doing normal/active things, NOT in a track suit. I don't usually have pics where I have dropped my pants to show the bag, but if we remember next hike I could do (we were meaning to this summer but keep forgetting). That to me is the best thing, I don't think about the bag. It is just there and I don't have those pictures because as I go about my normal day and enjoy my vacations I don't think about the bag. I am also not hiding it either, I live in Sweden and go do the whole public naked sauna with dip in the ocean thing. I have never been asked about it and neither do people really look or stare (the occasional very young person, but never an adult).
Lastly I think as more of us ostomates 'come out of the closet' it will be easier for new ostomates to accept the change in their body and embrace the freedom that can come with it. Had I known it would change my life in the ways that it had, I might just as well said when I was 26 hook up that stoma! It would have saved me years of pain and discomfort. Having a place where we are able to say here is me, this is what I do, look like, and how I live as an ostomate would be a great way for people to help each other and others. Making that location on the web so that people who are facing this surgery can find it and see the pictures and read the stories would be great. I have to say that pictures are incredably important, when I was first faced with this I couldn't even find a picture of what a healthy stoma would look like, just drawings. The few pictures of people were that usual old couple walking somewhere sunny in track suits, or smiling with little kids in a track suit. You can wear normal clothes with a stoma!! Pictures with the bag are also excellent, you get an idea how big it is and what it looks like on a person. Before I could get an appointment with the ET nurse I could find pictures on the web of the bags but never attached to a person so it was not possible to figure out what this would look like.
There is the obvious places for funding, the suppliers of our variety of products. Maybe some advertising revenue or options for them to do the odd product plug would help get the finacial end of things started.
Well I have rambled on enough. But e-mail me if you have questions and keep up the great work!!