Raising Ostomy Awareness on World Ostomy Day and Beyond
Ostomies save lives. In fact, an ostomy saved mine. I was diagnosed with bladder cancer in 2016 at age 40. I will have a urostomy — a type of urinary diversion — for the remainder of my life. Living life with an ostomy is not that much different from living life with a glucometer or pacemaker. It’s a medical device that helps save and prolong life.
It’s important to me to raise awareness about ostomy issues because there’s a negative stigma attached to fecal and urinary diversions. Many people believe that life ends with an ostomy. This is simply untrue. Life begins with an ostomy, and, in my case, life continues with one. I would not have had the chance to beat bladder cancer without my ostomy.
October is a perfect time for ostomates to raise awareness and share their stories for a few reasons. The United States celebrates Ostomy Awareness Day annually on the first Saturday of October. In addition to increasing the visibility of ostomates, the campaign raises awareness of the diagnoses that can lead to an ostomy.
Meanwhile, every 3 years, the International Ostomy Association organizes World Ostomy Day. It is also held on the first Saturday of October. World Ostomy Day 2021 is October 2, and the theme is “Ostomates’ Rights Are Human Rights — anytime and anywhere!” It’s a significant campaign because it involves the efforts of numerous national organizations on 4 continents. Together, they collaborate to raise awareness of lifesaving ostomy procedures.
What is an ostomy?
An ostomy is a surgically created opening in the abdomen that allows feces or urine to exit into an external pouch. There are also several types of internal or continent diversions. Most ostomy organizations offer support for people with those types of ostomies, as well. Some diversions are temporary and are only needed for a short period of time during treatment or complications due to medical situations. Others are permanent because of nonfunctioning or removed organs.
Ostomies are completely manageable. They do not inhibit the lifestyle you had before your cancer diagnosis.
Cancer is a leading reason for needing an ostomy surgery. An ostomy can also be necessary because of birth defects, inflammatory bowel disease, diverticulitis, incontinence, and other medical conditions.
Although ostomies can be life-saving procedures for cancer patients and others, there are many myths and misconceptions about ostomies. My advice for anyone facing the possibility of needing an ostomy due to a cancer diagnosis is this: Don’t wait! That goes for any urinary or fecal diversion, not just ostomies. If your medical team is telling you that you need a urinary or fecal diversion (ostomy, J-Pouch, or neobladder, among others) for any reason, permanently or temporarily, do it!
Ostomies are completely manageable. They do not inhibit the lifestyle you had before your cancer diagnosis. They do not stink. Other people cannot see or smell them. You can still dress however you want. Most of all, it will remove your disease, decrease the likelihood of metastasis and recurrence immensely, and give you back your life.
There is a healing and adjustment period. You do need to learn how to do some things differently and plan a bit more in advance for others. But overall, you’ll have a better quality of life with an ostomy than you did with active disease invading your urinary or digestive systems.
How can you raise awareness?
There are tons of ostomy-focused events going on throughout October that you can participate in. For example, the United Ostomy Associations of America (UOAA) recognizes World Ostomy Day with various activities.
- Don blue and green to show your support for ostomy awareness, or obtain an ostomy awareness shirt through the UOAA or Ostomy Secrets. Sometimes you can find shirts on Amazon or Etsy, but if you purchase them through the ostomy groups mentioned, portions of the purchase go back to the cause.
- Do a fundraising campaign for the ostomy or disease-specific organization of your choice and participate in social media campaigns.
- Participate in an educational activity. Many ostomy supply companies host webinars and panel discussions throughout the month.
Wherever your interests lie, there are a variety of events that you can connect to throughout the month. The single biggest thing you can do as an ostomate to help raise awareness is to share your personal story. Even if all you do is share it with the people closest to you or within an ostomy group on Facebook, it can make an impact. Letting others know that you have a great life with an ostomy and can do all the things you used to do is the best testament to ostomy awareness.
I recently saw a statistic that 1 in every 500 people has an ostomy. If that is the case, there are more than 15 million ostomates worldwide.
Ostomy resources galore
Sometimes life with an ostomy or other diversion may leave you with challenges or questions that people in the cancer community cannot always answer or even relate to. For this, you must get out of the cancer box and look at ostomy-specific resources.
If you have any kind of fecal or urinary diversion, consider getting involved with your local UOAA affiliated support group (ASG). The UOAA can connect you with national and local diversion resources. They have over 350 ASGs nationwide, including in Hawaii and Alaska. Many ASGs offer some sort of virtual participation these days. Also, if there is no group close to you, you can work with the UOAA and local members of the Wound, Ostomy and Continence Nurses Society to get one started in your area. I recently saw a statistic that 1 in every 500 people has an ostomy. If that is the case, there are more than 15 million ostomates worldwide. You probably already know at least one ostomate and you don’t even know it.
Also consider downloading the Ostomy 101 app. This app is completely free and features tips, tricks, and videos for ostomates. When you open the events tab, it also has listings of nationwide virtual events that you can join just by tapping on them.
There is also the National Ostomy Foundation and the Ostomy Awareness Foundation, which are lesser known organizations in the United States that work to support ostomates and raise awareness. If you are looking for ostomy support outside of the United States, I suggest connecting with the International Ostomy Association to find an organization in your country.
People with ostomies can do everything they did before, just with a little more planning, a few more accessories, and a lot more hydration.
Own it, don’t hide it
As someone who survived cancer because I was quick to agree to getting an ostomy, raising ostomy awareness is not something I do for just one day or one month per year. It is something I work on year-round. It is important to me for people to know and understand that having an ostomy is not anyone’s first choice. Little kids don’t dream of becoming ostomates. It isn’t something that all the “cool kids” have. It is something that can save our lives. However, just because we need our ostomies doesn’t mean we are inhibited by them. People with ostomies can do everything they did before, just with a little more planning, a few more accessories, and a lot more hydration.
If you are an ostomate, for whatever reason, I encourage you to own it, don’t hide it. It is a valid part of your journey. It is possibly also the reason you’ve been able to continue your life’s journey. Be proud of it and get out and prove people wrong. Share your story. Do all the things you want to do.
The best revenge on cancer is to get out and live the life you want. Do that!
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Liz Hiles is a bladder cancer survivor and urostomate. She was born and raised in Cincinnati, Ohio. She is so passionate about advocating for bladder cancer, AYA cancer, and ostomies that she switched career paths. In September 2020, she began writing and advocating full time. In August 2021, she also joined the GRYT Health team as their Engagement Specialist. When she isn’t writing and advocating for her health communities, she can be found doing creative work, walking/hiking, and spending time in nature and with the people and animals she loves.