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 academic scholarships.
Some of the procedures that fall into this group include:
ColostomyIleostomyUrostomyIPAA (j-pouch)Continent ileostomy, such as Kock pouch
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 guideA message board in which members can discuss topics relevant to those with ostomies or internal reservoirsA database of UOAA Affiliated Support Groups (ASG) that hold both in-person meetings and have virtual places for ostomates to find supportThe Phoenix, a subscription-based magazine that provides information of interest to those living with a colostomy, ileostomy, urostomy, or continent diversion
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 eventsA summer camp for kids who have an ostomy or a related condition, such as Crohn’s disease or ulcerative colitisThe Stoma Stroll Awareness Walk, which takes place on Canada Ostomy Day, to raise funds to support the organizationOstomy Canada magazine, published twice yearly and sent to members
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.
QLA’s annual 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.
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.
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:
Tidings Magazine, published every quarter and free for subscribers A host of literature and factsheets on a variety of topics helpful to those with a colostomy or ileostomy The Junior Ostomy Support Helpline (JOSH), which younger ostomates and their parents can call for support and assistance A directory of regional support groups for people living with an ostomy A private Facebook group for ostomates
There are currently 46 organizations that belong to the EOA. To raise public awareness and help improve the quality of life for people with stomas, the EOA holds a conference as well as World Ostomy Day; both take place every three years.
