Leading Charities & Organizations for Ostomy Surgery

A variety of support and information is available to those living with a stoma

People living with intestinal diversion surgery have special needs that are supported by several non-profit and charity groups. The types of surgeries that are typically included are ileostomy, colostomy, urostomy, ileal pouch-anal anastomosis (IPAA, better known as a j-pouch), Kock pouch, and Barnett Continent Intestinal Reservoir (BCIR).

Some of the resources that ostomates and those with an internal reservoir can find through these groups include in-person and online support, access to information on living well after surgery, fundraising opportunities, summer camps for children, and scholarships.

The United Ostomy Associations of America

The United Ostomy Associations of America (UOAA) was founded in 2005 after the United Ostomy Association (UOA) was discontinued.  It is a nonprofit organization supporting people who have or will have ostomy surgery or continent diversion surgery.

Some of the procedures that fall into this group include:

  • Colostomy
  • Ileostomy,
  • Urostomy, including continent urostomy, such as Indiana and Kock pouches, or orthotopic neobladder 
  • IPAA (j-pouch) 
  • Continent ileostomy, such as Koch pouch and BCIR

The UOAA is supported through private donations, memberships, and national sponsors from industry. Some of the resources provided by them include:

  • An “all-in-one” new ostomy patient guide
  • A message board in which members can discuss topics relevant to those with ostomies or internal reservoirs 
  • The UOAA Update, a newsletter prepared by the board of directors that offers information on upcoming events and conferences
  • A database of UOAA Affiliated Support Groups (ASG) that hold both in-person meetings and have virtual places for ostomates to find support
  • The Phoenix, a subscription-based magazine that provides information of interest to those living with an colostomy, ileostomy, urostomy, or continent diversion  

Ostomy Canada Society

Ostomy Canada Society, formerly the United Ostomy Association of Canada, is a non-profit volunteer organization that supports people in Canada living with an ostomy (such as a colostomy, ileostomy, or urostomy).

The group is supported through fundraising initiatives, memberships, and sponsors. It has an award system available to post-secondary students with a permanent ostomy who are pursuing a degree and for registered nurses who are seeking to become an enterostomal therapy (ET) nurse.

It also holds several local events every month across Canada, including support groups and educational seminars. And they provide a printable communication card that can be used when a restroom is needed or when traveling by air—to ensure that airport security has an understanding of the needs of an ostomate.

Other services offered to the ostomy community in Canada include:

  • Local satellite chapters and peer support groups across Canada that hold meetings and events
  • A summer camp for kids who have an ostomy or a related condition, such as Crohn’s disease or ulcerative colitis
  • The Stoma Stroll Awareness Walk, which takes place on Canada Ostomy Day, to raise funds to support the organization
  • The Ostomy Zone, a virtual space with a library of information on ostomy topics as well as a place to ask experts questions and read their blogs
  • Ostomy Canada magazine, published twice yearly and sent to members

Quality Life Association

The Quality Life Association (QLA) is a non-profit group that is dedicated to serving the community of people who have undergone, or are considering, intestinal diversion surgery. This includes surgeries such as continent intestinal reservoir (Koch pouch and Barnett continent intestinal reservoir), IPAA or j-pouch, and Brooke ileostomy.

The QLA’s mission is to educate and empower people living with intestinal diversion surgeries and assist them in living life without limitations. The organization is supported by funds from memberships, donations, and sponsorships.

In addition, the QLA offers information and videos on the various surgical procedures and how to live with them day-to-day. It also maintains a patient referral list of healthcare professionals to contact.

Their yearly conference takes place in September and offers speakers and seminars that serve patients who have an internal reservoir or an ileostomy. It also gives attendees access to healthcare professionals who treat patients undergoing such procedures.

Australian Council of Stoma Associations Inc.

The Australian Council of Stoma Associations Inc. (ACSA) is a group that primarily serves and unites the regional ostomy groups throughout Australia, but also maintains a host of information that is helpful to Australians living with an ileostomy, colostomy, or urostomy.

The ACSA established The Australia Fund, which assists ostomates in countries who are underserved and face difficulties in obtaining proper care and supplies. It also provides information regarding a program from the Australian government, the Stoma Appliance Scheme (SAS), which helps ostomates apply for assistance in receiving products and devices they need in order to improve their quality of life. 

The Colostomy Association

The Colostomy Association (formerly the British Colostomy Association), located in the U.K., began in 1967 and is funded through donations and fundraising events. Registration is free, but there is a small suggested donation.

One of the most important aspects of living with a stoma is having access to a public facility where an appliance can be emptied or changed, if needed. In the U.K., facilities for disabled people are often kept locked to avoid misuse. Therefore, the National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme was developed. The Colostomy Association can provide a key to these facilities and a photo card explaining that the key holder has a right to use them, for a small fee.  

Other organization offerings include:

European Ostomy Association

The European Ostomy Association (EOA) is a non-profit organization serving people with ostomies who live in Europe, the Middle East, and North Africa. Because this group covers such a broad area, they have made available a contact list of groups from the many countries included in their area.

One of the primary goals of the EOA is to have the adoption of the Charter of Ostomate Rights accepted within the countries they serve, as ostomates there may encounter significant difficulties, including discrimination and lack of appropriate ostomy supplies. The EOA holds a congress every three years which is hosted by a member group.

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