United Ostomy Associations of America (UOAA) is an organization for patients whose mission is to promote quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. We are grateful for this opportunity to contribute to Wound Management & Prevention with this new column and look forward to keeping the issues faced by ostomy patients at the forefront for the readers of this prominent clinical resource.
Approximately 100 000 new ostomy surgeries are performed annually. UOAA serves the estimated 725 000 to 1 million people in the United States who are currently living with an ostomy or continent diversion.
Ostomy patients are known to face hospital stays that may be too short to facilitate their learning about their new situation. Education in the acute care setting is concentrated and information is not always absorbed by the patient and caregivers. Therefore, postop education and support must continue to be available once a patient leaves the acute care setting. Through UOAA, ostomates can find support and education through one of our 300+ support groups in the United States.
UOAA receives hundreds of calls a year for persons trying to address a gamut of needs — from trying to find assistance with all aspects of ostomy care, to information on obtaining ostomy supplies, to how to handle insurance issues, or how to simply adapt to life with an ostomy. The emotional and adaptation issues are real and were brought to the forefront of the ostomy community with the recent tragic suicide death of 10-year-old Seven Bridges who once had an ostomy from a birth defect. Now more than ever, we need to educate the public and medical professionals of the emotional needs of persons living with an ostomy, many of whom feel alone and overwhelmed with their struggles. We all need to work together to remove the stigma associated with having an ostomy and wearing a pouch for bodily waste. We need to spread the message that “Ostomies save lives” and that support is available.
A visit to our website will show you it is more user-friendly with a new look and much valuable information with free educational resources for you to share with your ostomy and continent-diversion patients. It is also mobile-friendly. Here is a sample of what you can find:
- New Ostomy Patient Guide (you can request copies of this)
- Ostomy Nutrition Guide
- Sexuality and Emotional Health Information
- Skin Care Guide and Webinars
- Ostomy Travel Tips and TSA Travel Card
- Handy resources like our Know Your Ostomy Checklist
In 2017, our organization also started an Advocacy Committee that is grounded in the core values of our vision of a society where people with ostomies or continent diversions are universally accepted and supported socially, economically, medically, and psychologically and is guided by our Advocacy Agenda. We now have a national Advocacy Network that takes action on issues that affect the quality of life of all people living with an ostomy or continent diversion. This committee has created new self-advocacy toolkits that can benefit your patients as well such as:
- Ostomy 101 infographic
- Expect More — Take Control of Your Health Care
However, we can’t do it alone. We rely heavily on clinicians to inform their patients that we are available to share our multitude of resources to help them on their ostomy journey and adapt to their “new normal”. Watch this important message from ostomate and patient advocate, Keagan Lynggard-Hysell, on what she hopes medical clinicians will do for their ostomy patients.
Here are some simple things you can do that would only take a couple of minutes, but could make a huge difference in the lives of your patients:
- Tell your patients about UOAA and share our website address www.ostomy.org so they have ostomy support and educational resources at their fingertips
- Give your patients the toll-free number to our information line (800-826-0826) if they do not have access to the internet and need to find a support group or educational information
- Check out our nurse resources here
- Spread the word about UOAA with your coworkers and employees in other departments, especially discharge planners and visiting nurses
- Share the news that UOAA has a National Conference, a chance to meet other people just like them who gather for education, inspiring talks, social events, and a chance to connect with medical professionals and ostomy product manufacturers. Our 2019 conference is in Philadelphia August 6th-10th. Please contact firstname.lastname@example.org to order a supply of postcards to share with your patients.
- Post the Ostomy and Continent Diversion Patient Bill of Rights in your health care facility
Together we will make a positive impact!