Living With an Ileostomy: Tips for Maintenance & Daily Living


Finding out you have inflammatory bowel disease or cancer is undoubtedly difficult news to hear and accept. Finding out that you will also require an ostomy can be devastating as well. For many, the notion of living with a pouch (bag) on their stomach is a lot to bear, but it may be the best option to cure cancer when the location and size of the tumor prevents simply cutting out the tumor and reattaching the parts of the colon. It may also cure and or eliminate the symptoms of inflammatory bowel disease.

Finding Out About the Ostomy

After being educated about an ostomy, many learn that it is not as bad as they thought. It is common for the ostomy and the bag to go undetected—no one will know that you have one unless you tell them. Most importantly, having an ostomy can dramatically improve your quality of life from inflammatory bowel disease and or increase your survival, especially if the cancer is found early and treatment is provided.

Sharing the News

It can be hard to tell your friends, coworkers and loved ones that you are going to have surgery for inflammatory bowel disease or colorectal cancer and will have to wear an ostomy bag. However, this is often approached on a need-to-know basis. For instance, there may be those who need an explanation for why you may not be able to lift heavy items anymore or that it may be necessary to have frequent bathroom breaks for toileting needs and to manage the ostomy pouch (letting air out to release trapped gas).


In some cases, surgery is performed within a few days of the diagnosis. In preparation for the surgery, the bowels will need to be cleaned out. An ostomy nurse specialist will speak with you and your family to provide information and training about the ostomy. The ostomy nurse will be a valuable resource to answer questions and address any concerns about ostomy care.

The surgical course may take you from requiring pain management postoperatively, staying in bed for several days, sitting up and advancing to walking short distances and taking a shower.


Seeing the Stoma for the First Time

Your stoma’s healing progress will be checked by the ostomy nurse specialist. It may take a few days before you are ready to look at the stoma. But, once you do, the ostomy nurse will be there to answer any questions.

Learning to care for the stoma

When you go home, a home health care nurse may be initially needed to provide continuation of the instruction that you received in the hospital on stoma care and to provide wound care to ensure proper healing. The instructions usually include emptying, changing the ostomy pouch, learning what supplies to purchase, and where to purchase them.

Other issues, such as showering while wearing the pouch, preventing infection and the importance of how to care for the skin around the stoma are also addressed.