Living with an ileostomy

Learning to live with an ileostomy may seem 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 may 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.

Your social life can be as active as it was before surgery. You can enjoy the things you did before, such as travel, sporting events, and eating at restaurants. The first time you go out of the house after surgery, you may feel as if everyone is staring at your pouch even though it can’t be seen under your clothes. Remember, you may feel the pouch on your body, but no one can see it.

You may also worry about your pouch filling with gas and bulging under your clothes. A quick trip to the rest room can take care of this problem. If you’re worried about your pouch filling up right after eating at a social event, remember that people without ileostomies often need to go to the rest room after eating. Nobody will think it unusual if you do the same. You will likely find that you need to empty your pouch less often than you need to urinate.

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:

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: December 2, 2014 Last Revised: December 2, 2014

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