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Telling others

Living with an ileostomy

Learning to live with an ileostomy may seem like a big project. It is a lot like any other major change in your life. Starting a new job, moving to a new city, marriage, and having children are all examples of life changes that get easier over time. At first, you have to get used to the new aspects of these experiences and be open to the changes that are taking place. Having a positive outlook, patience, and a sense of humor are keys to adjusting to any life changes.

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 all 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 cannot be seen under your clothes. Remember, you may feel your 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 are 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.

Last Medical Review: 03/17/2011
Last Revised: 03/17/2011