Ostomates Have a Voice: Learning How to Use It
What is an ostomy? The chances are if you asked 100 people this question you would, in my opinion, be lucky to find 5 people who could truly describe in a basic manner what it was and its function.
I haven't done any official research on this yet but for me whatever the number, it is not enough. Especially when it comes to urostomies.
Overall, I have adjusted well to living with two ostomies. For me personally, I am very open about them and how they came to be part of me.
The initial struggle
For many people, initially or longer-term, it is very hard to accept this life-changing surgery. Body image and confidence are a real struggle for many and I can certainly understand why.
For these and many other reasons, it is important to me that ostomates have a voice. There are events such as world ostomy day, there is great awareness with organizations such as BladderCancer.net openly discussing all aspects of bladder cancer including bladder removal.
Raising awareness via social media
The expansion of social media channels and the reach has for sure helped with raising awareness but there is still a long way to go.
There is still a stigma associated with having an ostomy bag. For the most part, this is can be mostly chalked up to ignorance. Quite simply people don't know what it is. In some ways like a cancer diagnosis itself, it is the fear of the unknown.
While I was active on social media prior to my operation, as everything happened so fast, I never thought or really had a chance to think to look up or search for information about what I was going through or others that did.
After surgery, I began to search for something to show me I wasn't the only person in the world with not one but two ostomy bags.
I connected with a fellow double bagger - what the ostomy community calls someone with two ostomy bags. She had her own blog, and I took inspiration from there.
Opening up about my experience
As a first step, I opened up to my wider online friends about the fact I had been through treatment for advanced, invasive bladder cancer. I then started to share with them the signs to beware of for bladder cancer.
I then started my own Facebook page to share my experiences - the good and bad, traveling with an ostomy, what products to choose and generally getting back to a new life after ostomy surgery.
I have connected with many people with so many experiences all over the world. I have supported others going through similar surgery or experiences. I found this so rewarding and very therapeutic. It helped me maintain good mental health while supporting and inspiring others.
I was delighted when I had the opportunity to join the BladderCancer.net community. I can continue to share my experiences and support others on the journey. However even more important to me is being part of a community focused on raising awareness around bladder cancer and life as an ostomate.
Everyone can play a part
Getting the message out there that bladder cancer and ostomy surgery can happen to anyone regardless of sex, age, or race. While there are some key symptoms experienced by many, people may experience them differently. While one treatment suits one person, it may not suit another.
I like to help others by sharing my own experiences, as I believe this would have been helpful to have in my own journey too.
Everyone can play a part. It doesn't matter whether it is small or large. Whatever you do. It makes a difference.
How well does your healthcare provider understand your bladder cancer?