I just had surgery that resulted in an ostomy. I wasn’t given very much information in the hospital. Do you know of any resources that may be helpful?
There is a wide range of resources available in a variety of media formats. Information may be specific to the care and management of your ostomy or may be about the underlying disease or condition that resulted in your ostomy. While certainly not inclusive of all the materials that are available, some useful community resources follow.
All of the major ostomy supply companies in Canada provide educational materials for patients with any type of ostomy (ileostomy, colostomy, and urostomy). Booklets reviewing general anatomy, types of ostomy surgery, and common considerations for self-care are readily available in English and in French. There is limited availability of materials in other languages. Other support tools may also be available, such as DVDs, videos, and CDs, which will review actual self-care techniques, psychological responses to life with a stoma, and different types of appliances and products. Tear-sheets that visually demonstrate common stomal or peristomal problems and suggested treatments are also available. Teaching materials are offered free of charge. Materials can be accessed through customer support lines (numbers listed at the end of the article) or through their respective web sites: Coloplast, ConvaTec, and Hollister.
The United Ostomy Association of Canada also offers a variety of resources for individuals with ostomies. This is a national body with chapters and contacts listed for most provinces; there are limited contacts for the territories. Their web site provides useful information such as a dictionary of common terminology associated with ostomy surgery, listings of publications and conferences, and links to support groups and chat-lines.
“Positive Options for Living with Your Ostomy” is a well written book by a clinical psychologist, Dr. Craig White. The book reviews self-care requirements and helps the reader to explore fears and feelings related to the ostomy. The broad range of topics Dr. White reviews include the hospital experience, coping with social situations, and returning to sexual intimacy. The book is available through most major book retailers. The Canadian Association for Enterostomal Therapy is a national organization for Enterostomal Therapy Nurses. Online teaching booklets for each type of ostomy are available. The site may also help you find an ostomy nurse that is close to your home.
If you are looking for specific information related to the underlying disease that led to your ostomy surgery, there are several options to consider. The Canadian Cancer Society offers free educational materials on a wide variety of cancers, including colorectal cancer. The Colorectal Cancer Association of Canada offers information about treatment guidelines and links to the latest research. If your disease requires further treatment with chemotherapy, Cancer Care Ontario has useful information, in both English and French, on commonly used chemotherapy drugs, practice guidelines for treatments of cancers, and suggestions for management of common side effects.
Whether the reason for your ostomy surgery is inflammatory bowel disease (Crohn’s and ulcerative colitis), diverticular disease, colon cancer, or another cause, the Gastrointestinal Society has further patient resources. As you may know, the Society offers updates on related research, educational brochures, and public forums.
While this does not represent all of the resources that are available to people with ostomies and their families, the ones listed may provide a starting point for your own exploration for help and information.