It’s World Ostomy Day! It’s also Ostomy Awareness Day! This is my third year celebrating Ostomy Awareness Day. It’s pretty surreal. The first year I was just a few weeks out of surgery and remember sitting on my bed posting on Facebook about it. I looked back for my status update and it turns out I celebrated by eating brownies. You can count on me to celebrate anything with dessert! I’m celebrating with brownies again this year – maybe it’ll become a tradition. I made some coconut flour brownies but don’t let the type of flour fool you, I’m pretty sure there’s enough agave and butter in them to take away their “healthy” status.
Aside from the brownies, today is special because we’re actually celebrating two ostomy awareness campaigns…
World Ostomy Day is sponsored by the International Ostomy Association (IOA) and for some reason, it’s only celebrated every three years. Lucky for us, this is one of those years! World Ostomy Day aims to bring the needs and aspirations of ostomates to the attention of the general public with the hope to improve the rehabilitation of ostomates around the world. As the IOA sees it, we all have different stories, but one main goal: to show that you can still lead a full life with an ostomy. The IOA put together a video about World Ostomy Day – if you’re interested, take a look.
Ostomy Awareness Day is sponsored by the United Ostomy Association of America (UOAA) and is celebrated every year. The UOAA is celebrating with a 5k via the WannaWearOne Ostomy AWEARness campaign. All proceed benefit the UOAA charity and donations are tax deductible, so if you’re still looking for places to donate all the money you don’t spend on ostomy supplies, consider donating to the UOAA. There are physical WannaWearOne races and a virtual race so you can run 5k wherever you’re located.
Coloplast has a World Ostomy Day Initiative, encouraging people to post their stories using the hashtag: #MyOstomyStory
Convatec & Ostomy Secrets will also be celebrating World Ostomy Day by sharing inpsiring stories on their social media accounts for you to share in your newsfeed.
World Ostomy Day & Ostomy Awareness Day are the one day a year that the ostomates get to take center stage, all together, and spread awareness. An ostomy is a surgically made opening created to allow fecal waste (colostomy or ileostomy) or urine to exit the body when normal bowel or bladder function is lost. Having an ostomy is a life sentence (you know, as opposed to a death sentence, because it gives us life). Some people are given a temporary ostomy with the intention of eventual reversal, while others receive a permanent ostomy (one which is not reversible). Persons with ostomies wear pouches to neatly collect their bodily waste and protect their skin from harsh bodily acids. Technology of the ostomy creation procedures as well as the pouching systems has greatly improved, however many people still carry a stigma toward ostomates. Often, the stigma is due to lack of education, so it’s our job to educate the public. In addition to educating the public about ostomies, we need to advocate for our rights to supplies and care. It’s important that we do everything we can to make sure every state has a law requiring insurance companies to cover our supplies.
You might be thinking to yourself, ” Great ideas, but I don’t have a blog or a huge following on social media – how can I make a difference?”. Well I’ll tell you.
First things first, make sure you’re educated. If you’re going to be advocating for something, you’ve got to have a strong understanding of it. Reading my website cover to cover is a great place to start, I’ve done a lot of research! It’s also really helpful to understand your insurance coverage. I’ll be adding some information about that to my website soon, but it’s different for everyone. Start learning about your insurance by asking your providers/suppliers about the scope of your coverage, restrictions, allowances, deductibles, co-payments, co-insurance, out of pocket costs, and any maximums/limits.
Next, if you’re comfortable with it, tell your story to others. This is a great way to lesson/get rid of the stigma. I love when I tell people and have to show them my bag in order for them to believe me.
Have you ever read the Ostomates Bill of Rights? If not, check it out! We can use World Ostomy Day and Ostomy Awareness Day to advocate for everything that allows that Bill of Rights to continue to be true for us.
What we really need (in the USA at least), is for people to advocate for insurance to cover ostomy care and supplies. Support the UOAA initiatives, most of which concern availability and access to “suitable appropriate supplies”. You can do this by writing letters to your elected representatives when there’s an initiative trying to be passed. To stay “in the know” about initiatives, join your local support group, attend a national conference, follow the UOAA on Facebook and Twitter, and visit the UOAA website.