Telling others about your ileostomy
You might be worried about how others will accept you and how your social life may change. It’s natural to think about how you’ll explain your surgery. Your friends and relatives may ask questions about your operation. Tell them only as much as you want them to know. Don’t feel as if you have to explain your surgery to everyone who asks. A clear, brief answer would be that you had abdominal surgery, or that you had part of your intestine removed.
If you have children, answer their questions simply and truthfully. A simple explanation is often enough for them. Once you have explained what an ileostomy is they may ask questions about it and want to see your stoma or the pouch. Talking about your surgery in a natural way will help get rid of any wrong ideas that they may have. They will accept your ileostomy much the same way you do.
If you’re single and dating, you can pick your time to tell a new partner, but it might be better to do so early in a relationship. Stress the fact that this surgery was necessary and managing your ileostomy does not affect your activities and enjoyment of life. This not only lessens your anxiety, but if there is an issue that cannot be overcome, the letdown is not as harsh as it might be later. Do not wait until intimate sexual contact leads to discovery.
If you’re in a relationship, married, or considering marriage, talk with your partner about life with an ileostomy and its effect on sex, children, and your lifestyle. Going to an ostomy support group meeting together may also be helpful. Talking to other couples in which one partner has an ileostomy will give you both an experienced point of view. See the section called “Intimacy and sexuality when you have an ileostomy” for more on this.
- 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