Getting help, information, and support
There are many ways to better understand and manage your life with an ileostomy. 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 in the “To learn more” section.
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 an ileostomy. They can answer many of your questions about day-to-day life. Your ostomy visitor has successfully adapted to the changes that come with ostomy surgery, and can help you adjust, too. Taking part in 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 ileostomy. 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).
A number of 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.
- What is an ileostomy?
- How your digestive system works
- Types of ileostomies
- Managing your ileostomy
- Choosing an ileostomy pouching system
- Emptying and changing the ileostomy pouching system
- Ordering and storing ileostomy supplies
- Caring for an ileostomy
- Avoiding and managing ileostomy problems
- If you are hospitalized while you have an ileostomy
- Living with an ileostomy
- Telling others about your ileostomy
- What to wear when you have an ileostomy
- Eating and digestion with a ileostomy
- Returning to work after getting an ileostomy
- Intimacy and sexuality when you have an ileostomy
- Playing sports and staying active with an ileostomy
- Traveling when you have an ileostomy
- For parents of children with ileostomies
- Getting help, information, and support
- To learn more
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:
Last Medical Review: December 2, 2014 Last Revised: December 2, 2014