Living with a Bowel Ostomy
What is an ostomy?
An ostomy is a surgically made connection between the bowel and the abdominal (belly) wall. The ostomy changes where stool (bowel movements) exits the body. The stool passes through an opening in the abdominal wall, called a stoma.
- When the connection is to the colon, it is called a colostomy.
- When the connection is to the small bowel, it is called an ileostomy or a jejunostomy.
Ostomy surgery is done because part of the bowel has disease or is not working as it should. In some cases, the ostomy is temporary (short-term), and the bowel can be reconnected at a later time. In some cases, it is permanent (long-term).
How does an ostomy work?
The bowel empties stool through the stoma in the abdominal wall. A bag is attached to the abdominal wall to catch the stool. This bag needs to be emptied every so often.
The stool consistency (how it looks and feels) depends on where in the bowel the colostomy is placed. The further along in the bowel, the more formed the stool will be. For some people, bowel movements can be regular and you may not need to wear a bag all the time.
How do I care for the stoma?
It is important to take care of the stoma and the skin around it to prevent problems and skin breakdown. An ostomy nurse can teach you how to care for the skin and place the bag. Look at the stoma for changes in color or swelling and report any changes to your healthcare provider right away. If the skin around the stoma becomes irritated (red or swollen), call your care team or ostomy nurse.
Life with an ostomy
An ostomy is a life-long change that can cause distress, skin problems around the stoma and relationship concerns. It can take time to adjust to life with an ostomy. Many people feel isolated after ostomy surgery and unsure how they will enjoy life again. Remember, many people live long, healthy and fulfilling lives with an ostomy! Connecting with a support group or support person can help you see how fulfilling life can be and be a reliable source of information.
Can I have a normal sex life with an ostomy?
Sexual and physical appearance concerns happen for many survivors and often improve with time as you become more accepting of the ostomy and bag. Bag or pouch covers or sashes can be used to cover the pouch during intimate moments. Choosing sexual positions that are comfortable and have little pressure on the bag can prevent problems or leakage.
Where can I find support for living with an ostomy?
- An ostomy nurse can help with the many aspects of ostomy care, including skincare, appliance/bag selection, and use, complications, and changes in the stoma over time. Ask your healthcare team to help you find an ostomy nurse you can call if issues come up.
- Many people find comfort in a support group, whether it is in person or online. There are quite a few virtual communities that address the issues a person with an ostomy faces (just search for "ostomy support"). Some organizations offer peer-to-peer support as well.
- Anyone with an ostomy should find a group or healthcare provider they can turn to for reliable information and assistance, as situations may arise years after getting the ostomy and you need to know where to turn for help.
Resources for Ostomy Support
These websites provide helpful information about dealing with the many concerns related to having an ostomy.
United Ostomy Associations of America, Inc. - https://www.ostomy.org/
Wound Ostomy and Continence Nurses Society - https://www.wocn.org/
Ostomy Canada Society - https://www.ostomycanada.ca/
American Society of Colon and Rectal Surgeons - https://www.fascrs.org/patients/disease-condition/ostomy-0
United Ostomy Associations of America. Living with and ostomy: FAQs. Retrieved from https://www.ostomy.org/living-with-an-ostomy/
American Society of Clinical Oncology (ASCO). (2019). How to live with an ostomy bag. Retrieved from https://www.cancer.net/navigating-cancer-care/how-cancer-treated/surgery/types-ostomy/how-live-with-ostomy-bag