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You might be worried about talking to others about your surgery and ostomy. Or maybe you're worried about how others will accept you and how your social life may change.
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.
When you're deciding who to tell about your ostomy, it's best to first talk to the people who need to know. These people include your health care team, your spouse or partner, and friends and family who will be involved in helping you recover from surgery. Besides the people you talk to first, you can decide who to tell. Don't feel that you have to explain it to everyone. But telling your story can help educate others and help them understand how you have been affected by your surgery.
It's best to answer their questions simply and truthfully. A simple explanation is often enough for them. Depending on what type of stoma you have, they may ask questions about it and want to see it. Talking about your surgery in a natural way will help get rid of any wrong ideas that they may have. They will accept your ostomy much the same way you do.
You might be able to choose when tell a new partner, depending on what type of stoma you have. Stress the fact that this surgery was necessary and managing your ostomy 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.
Talk with your partner about life with an ostomy and its effect on sex, children, and your lifestyle. This will help reduce stress about the situation. Going to an ostomy support group meeting together may also be helpful. Talking to other couples in which one partner has an ostomy will give you both an experienced point of view. See Intimacy and Sexuality When You Have an Ostomy for more on this.
Learning to talk openly about an ostomy may feel like a big challenge, but it will get easier over time. Just as with any life change having a positive outlook, patience, and a sense of humor are key. There may be times after surgery when you feel discouraged. You may feel alone and isolated. Because the whole experience is so new to you, you may feel awkward, frustrated, and uncertain. Feeling discouraged is real and normal. You might cry, be angry, and react in ways that are unusual for you. Talking to a trusted friend, nurse, clergy, and certainly another person with an ostomy may help you work through those feelings.
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.
In its original form this document was written by the United Ostomy Association of America (1962-2019). It has since been modified and updated by the American Cancer Society using the following sources.
American Thoracic Society. Living with a tracheostomy. Am J Respir Crit Care Med. 2016;194:5-6. Accessed at https://www.thoracic.org/patients/patient-resources/resources/tracheostomy-in-adults-2.pdf on October 2, 2019.
United Ostomy Association of America (UOAA). Living with an ostomy. Accessed at https://www.ostomy.org/wp-content/uploads/2018/03/Living-With-An-Ostomy-Brochure.pdf on October 2, 2019.
United Ostomy Association of America (UOAA). Living with an ostomy: FAQs. Accessed at https://www.ostomy.org/living-with-an-ostomy/ on October 2, 2019.
Last Revised: October 2, 2019