Getting Ostomy Help, Information, and Support

There are many ways to better understand and manage life with a ostomy. Your doctor and ostomy nurse are important sources of information and support. A lot of information can also be found on various websites.

Individual and group support

Talking with someone who has gone through the same experience can help, too. Look for an ostomy visitor program in your area. Ask your surgeon or ostomy nurse if they know of visitor programs near you. There is a program that matches you with a volunteer who, like you, has an ostomy. They can answer many of your questions about day-to-day life.

An ostomy support group can also be very helpful. It allows you to share your feelings and ask questions as you learn to live with your ostomy. It also lets you share your successes with others who may need the benefit of your experience. Most ostomy visitor programs and support groups are sponsored by local chapters of the United Ostomy Associations of America (UOAA).

Some cancer centers have ostomy rehabilitation programs that include all types of ostomies, whether or not they are caused by cancer. Ask about services that may be available, such as educational pamphlets and ostomy supplies for people without insurance coverage.

You can also contact the American Cancer Society (1-800-227-2345) for information on ostomy support groups.

Other organizations and websites*

United Ostomy Associations of America, Inc. (UOAA)
Toll-free number: 1-800-826-0826
Website: www.ostomy.org

This organization’s website includes information for people of all ages with fecal and urinary ostomies. You can also find information about local support groups; the interactive website includes discussion boards and online support groups.

The UOAA website includes a page on Emergency Supplies which as information about how you might be able to access ostomy supplies if you don’t have insurance or need lower cost supplies.

Wound, Ostomy and Continence Nurses Society (WOCN)
Toll-free number: 1-888-224-9626
Website: www.wocn.org

The WOC nurse is a specialist in ostomy care and rehabilitation. These nurses care for and teach people with ostomies, coordinate patient care, teach nursing staff in hospitals and clinics, and work closely with the nursing and medical professionals to improve the quality of ostomy rehabilitation programs. The WOCN Society can help you find a WOC nurse in your area. The “Patient Information” section of their website contains resources for patients and families.

International Ostomy Association (IOA)
Website: www.ostomyinternational.org

Advocates for and outlines the rights of ostomates worldwide

Global Tracheostomy Collaborative
Website: http://globaltrach.org/

A non-profit organization that has patient and family resources, including support groups, discussion forums, and education materials.

Centers for Medicare & Medicaid Services (CMS)
Toll-free number: 1-800-633-4227
TTY: 1-877-486-2048
Website: www.cms.hhs.gov

Ostomy care and supplies are covered under part B of Medicare. These same supplies and care may be covered under Medicaid (this is state regulated and varies). Check with an ostomy nurse about which health department or other agency in your state may be able to help you.

*Inclusion on this list does not imply endorsement by the American Cancer Society.