After 17 years in this industry and my own life with an ostomy, the question I hear most from new ostomates is simple: where do I start? My answer is almost always the same. Start with the United Ostomy Associations of America (UOAA) at ostomy.org.
This post is part of my community series spotlighting the people and sites doing great work for ostomates. If you missed them, read my write ups on Vegan Ostomy and Christine Kim of Ostomy/Connection.
Who UOAA Is
UOAA is a 501(c)(3) nonprofit that supports, empowers and advocates for people who have had or will have ostomy or continent diversion surgery. Their work rests on four pillars: support, education, resources and advocacy.
And you are not alone. Roughly 100,000 new ostomy surgeries are performed in the United States every year.
Trusted, Medically Reviewed Education
UOAA offers clinically reviewed guidance on pouch care, diet, skin care, intimacy, travel and daily living, from children to adults. A few places I point people:
- New to all this? Start with the UOAA New Ostomy Patient Guide. When you're ready to think about gear, my post on how to choose an ostomy belt picks up where it leaves off.
- Eating after surgery: UOAA covers diet and nutrition, and I shared what worked for me in What to Eat After Ostomy Surgery.
- Parastomal hernia concerns: UOAA's Do I Have a Parastomal Hernia? is a great first read. Then see my page on the parastomal hernia belt, and always talk with your surgeon or WOC nurse.
- Supplies and insurance: UOAA hosts webinars on navigating insurance and getting supplies affordably. I also keep a list of ostomy resources for supplies, nurses and support.
Traveling With an Ostomy
This one is close to my heart. UOAA created a TSA communication card and travel tips that make airport security far less stressful. I built on that with my own TSA airport security guide and printable card, and you can grab it along with my other free handouts on the printables page. For packing and planning, read Traveling With an Ostomy.
Swimming and Staying Active
As a surfer and martial arts instructor, I can tell you an ostomy doesn't have to keep you out of the water. UOAA's Swimming With an Ostomy is excellent. For gear and personal tips, see my ostomy belt for swimming page, my ostomy belt for sports page, and the story of our water park day with my kids.
Find Your People
Peer support changed my life. UOAA has more than 300 Affiliated Support Groups across the country. Use their support group finder to locate one near you. I've been attending ostomy conferences for nearly 15 years and have been a guest speaker at many support groups and educational events along the way, and I can't recommend them enough. Some of the best tips I've ever picked up came from conversations in those rooms.
Talk to a Nurse
UOAA's Virtual Ostomy Clinic and virtual certified ostomy nurse let you get expert guidance without waiting weeks for an appointment. You can also find a local WOC nurse through the WOCN nurse finder. If you're a nurse yourself, visit my ostomy belt resources for WOC nurses.
Advocacy That Protects Your Rights
UOAA runs a national advocacy network working on issues that affect quality of life for everyone with an ostomy or continent diversion. Their Patient Bill of Rights and restroom access tools are worth knowing.
Events and Community
- Ostomy Awareness Day and the Run for Resilience 5K, held virtually and in person every fall (October 3 and 4 this year)
- Webinars and a national conference for ongoing learning
- Donate Your Supplies, so unused products reach people who need them
How to Reach UOAA
- Website: ostomy.org
- Toll free: 1 800 826 0826
- Mail: P.O. Box 2293, Biddeford, ME 04005
A Note From Me
Gear is only part of living well with an ostomy. Education, community and advocacy matter just as much, and UOAA does all three. If you'd like to know more about my own journey, read how ostomy surgery saved my life, or reach out to me directly. I'm always happy to talk, including by Zoom with someone who's been there.
This post is for education only and is not medical advice. Please talk with your doctor or WOC nurse about your care.