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, such as those listed here.

Talking with someone who has gone through the same experience can help, too. Look for an ostomy visitor program in your area. This is a program that matches you with a volunteer who, like you, has a 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).

Cancer centers have ostomy rehabilitation programs which include all types of ostomies, whether or not they are caused by cancer. Ask about services that may be available, such as educational pamphlets, ostomy supplies for people without insurance coverage, or help contacting the local UOAA chapter. You can also contact the American Cancer Society (1-800-227-2345) for information on ostomy support groups.

Other organizations and websites*

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 professions 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.

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

For local support group information; the interactive website includes discussion boards and online support groups

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

Advocates for and outlines the rights of ostomates worldwide

ConvaTec GreatComebacks Community
Website: https://www.convatec.com/ostomy/meplus-community/

A non-profit organization that accepts donations of unused ostomy products and provides products to uninsured people for the cost of shipping and handling.

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.

In its original form this document was written by the United Ostomy Association, Inc. (1962-2005) and reviewed by Jan Clark, RNET, CWOCN and Peg Grover, RNET. It has since been modified and updated by:

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

United Ostomy Associations of America, Inc. What is an Ostomy? Accessed at www.ostomy.org/What_is_an_Ostomy.html on January 9, 2017.

Wound Ostomy Continence Nurses (WOCN) Society. Basic Ostomy Skin Care. 2012. Accessed at www.ostomy.org/uploaded/files/ostomy_info/wocn_basic_ostomy_skin_care.pdf?direct=1 on January 9, 2017.

Wound, Ostomy and Continence Nurse Society. Core Curriculum: Ostomy Management. Wound, Ostomy, Nurse Society; 2016

 

Colostomy

National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Ostomy Surgery of the Bowel. Accessed at http://digestive.niddk.nih.gov/ddiseases/pubs/ostomy/index.aspx on January 6, 2017.

US Department of Health and Human Services, National Institutes of Health. MedlinePlus: Colostomy. Accessed at www.nlm.nih.gov/medlineplus/ency/article/002942.htm on January 9, 2017

Emory University Wound, Ostomy& Continence Nursing Education Program: Ostomy and Continent Diversions Module. Nursing Management of the Patient with a Colostomy. September 2008. Pages 39-55.

United Ostomy Associations of America, Inc. Colostomy Guide. 2011. Accessed at www.ostomy.org/uploaded/files/ostomy_info/ColostomyGuide.pdf?direct=1 on January 9, 2017.

 

Ileostomy

Emory University Wound, Ostomy& Continence Nursing Education Program: Ostomy and Continent Diversions Module. Nursing Management of the Patient with an Ileostomy. September 2008. Pages 67-75.

National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Ostomy Surgery of the Bowel. Accessed at http://digestive.niddk.nih.gov/ddiseases/pubs/ostomy/index.aspx on January 12, 2017.

US Department of Health and Human Services, National Institutes of Health. MedlinePlus: Ileostomy. Accessed at www.nlm.nih.gov/medlineplus/ency/article/007378.htm on January 12, 2017.

US National Library of Medicine, PubMed Health. Short bowel syndrome. Accessed at www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001284/ on January 12, 2017.

United Ostomy Associations of America, Inc. Ileostomy Guide. 2011. Accessed at www.ostomy.org/uploaded/files/ostomy_info/IleostomyGuide.pdf?direct=1 on January 12, 2017.

 

Urostomy

Emory University Wound, Ostomy & Continence Nursing Education Program: Ostomy and Continent Diversions Module. Nursing Management of Patients with Standard Urinary Diversions. September 2008. Pages 111-119.

National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Urinary Diversion. Accessed at http://kidney.niddk.nih.gov/kudiseases/pubs/urostomy/ on January 12, 2017.

United Ostomy Associations of America, Inc. Continent Urostomy Guide. 2009. Accessed at www.ostomy.org/ostomy_info/pubs/ContinentUrostomyGuide.pdf on January 12, 2017.

United Ostomy Associations of America, Inc. Urostomy Guide. 2011. Accessed at www.ostomy.org/uploaded/files/ostomy_info/UrostomyGuide.pdf?direct=1 on January 12, 2017.

Last Medical Review: June 2, 2017 Last Revised: June 12, 2017

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