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.
- 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