October 6, 2018 – Happy World Ostomy Day! The theme this year is, “Speaking out changes lives”, and boy does it ever!
When I started my ostomy journey over five years ago, I felt alone and was worried about what my future would look like.
Then I saw a few people on YouTube who were openly talking about their ostomy surgery and how they manage things. I was blown away.
I mean, these people looked normal. They were acting normal. They lived normal lives. Yet they were all living with a stoma – seemingly unphased about the whole thing.
After binge-watching more videos, I came to the realization that living with an ostomy doesn’t have to be a negative experience.
My perspective changed for the better as I learned more from these people.
Here’s the thing – had they kept quiet and lived their lives like “normal people”, I would have held onto the belief that an ostomy would be debilitating and terrible to live with. Going into surgery with those thoughts would have made my life so much harder than it needed to be.
But it wasn’t negative. I learned from their experiences; had fun with figuring out the world of ostomy supplies, and I began to enjoy life in a way I was never able to before my surgery.
I was lucky. I found these “happy ostomates” because I looked for them, but it’s not often that easy when it comes to new patients who may not have access to the internet or who don’t know where to look (not everyone uses YouTube or social media).
And that’s only from my perspective as a new patient looking for hope.
The general public, policymakers, healthcare providers, family, friends, coworkers – all benefit when we speak out.
Whether it be to raise awareness, educate, destigmatize, or simply gather support, our voices matter.
This is why it’s so important that we talk about ostomies wherever we can – both online and offline.
When I started advocating, I was doing it because I felt that if I was going to go through the process (of surgery and life after that), why not document and share the experience. Little did I know how many people I would reach or the impact it would have on other.
Collectively, we can reach a lot of people – easily millions – if we share our stories and speak out. Many more than only those who have an ostomy.
How can we do this? There are lots of ways!
- Social media.
- Start a blog.
- Post videos.
- Join your local ostomy chapter.
- Become a patient mentor.
- Open up to family and friends about your experiences.
- Join an online community forum.
- Speak at patient events.
- Share your story through printed ostomy publications.
- Volunteer for your national or local ostomy group.
- Participate in fundraising events.
- Wearing ostomy awareness clothing (yes, I’ve been asked about my “No colon, still rollin'” shirt in public!)
- and more!
But what if I don’t want to be public about my ostomy?
I won’t judge or guilt someone for not speaking out – that’s a personal choice and not everyone needs to be an advocate.
If you choose, for whatever reason, not to speak out openly about your ostomy, there are still ways you can help!
Many advocates spend a considerable amount of time, money, and energy in creating content, going to patient/industry events, doing public speaking, volunteering, etc.
Here are some effective ways to help amplify their efforts:
- Share their content.
- Donate to them.
- Donate to their fundraising efforts.
- Let your healthcare provider know about this person and the work they do (often times, health care providers will refer patients to their content).
- Send them your encouragement.
Speaking out about living with an ostomy (or caring for someone who does) helps to improve the quality of life for so many. It can also help to inspire new patient and plant the seed for future advocates!
I’ve connected with so many people since having my surgery, many of whom inspire me on a daily basis. But the people below were some of the first who I discovered, and I owe a lot of my initial motivations for becoming an advocate to them.
(Note: some of these advocates no longer post videos but may still be advocating elsewhere)
- Thaila Skye (YouTube). I fell in love with Thaila’s videos and product reviews, but her skills as a video producer have always inspired me to do more!
- “Outpatient” (YouTube). Sadly, no new videos from this guy in years, but I loved his product reviews and tips videos.
- Maggie Baldwin of Let’s Talk IBD (YouTube). Maggie has been, and continues to be, an active advocate and I’m happy to call her my friend.
- Laura Cox of Ostomystory (YouTube). I’ve always looked up to Laura, and have had the honor of working with her on several ostomy-related projects (webinar, panel, interview)
- Jessica Grossman of Uncover Ostomy (Website). Fellow Canadian and awesome advocate (who also recently celebrated her 9th year of advocacy)!
- Jay from UCandPSC (YouTube). Jay documented his experience of losing his colon, having an ostomy, then having it reversed for his j-pouch. While he doesn’t make video anymore, his videos had a tremendously positive effect on me before and after my surgery.
Thank you for speaking out and changing my life!