Living with your ileostomy
You had an injury or disease in your digestive system and needed surgery called an ileostomy. The surgery changed the way your body gets rid of waste (feces).
Now you have an opening called a stoma in your belly. Waste will pass through the stoma into a pouch that collects it.
You will have many new sensations in your body from the physical changes the operation has caused. Over time you will need to learn how to deal with these feelings.
Standard ileostomy - living with; Brooke ileostomy - living with; Continent ileostomy - living with; Abdominal pouch - living with; End ileostomy - living with; Ostomy - living with; Crohn's disease - living with; Inflammatory bowel disease - living with; Regional enteritis - living with; Ileitis - living with; Granulomatous ileocolitis - living with; IBD - living with; Ulcerative colitis - living with
Talking With Others
You may feel sad, discouraged, ashamed, or alone after getting an ileostomy. You may cry or become angry easily, or you may not have much patience.
Try talking with a close friend, your health care provider, or a family member you feel close to. Ask your provider about seeing a mental health counselor. There may also be a support group in your area for people who have had ileostomies.
When you eat out or go to a party, remember it is normal for most people to use the bathroom after they eat or drink. Do not feel embarrassed or self-conscious if you need to use the bathroom to empty your pouch.
You may be nervous about talking about your ileostomy with other people in your life. This is normal. You should not feel obliged to talk more than you want to, or even at all if people are curious and ask too many questions.
If you have children, they may ask to see your stoma or pouch. Try to be relaxed when you talk with them about it. Try to explain how it works and why you have it. Answer their questions so they do not develop wrong ideas about it on their own.
Attend a local ostomy support group if there is one in your area. You can go by yourself, or take a spouse, family member, or friend with you. It may help to talk to others who have ileostomies and share ideas. If you have a partner, it can help for both of you to talk with other couples about how they live with an ileostomy.
You should not need special clothes. Your pouch will mostly be flat. It cannot be seen under clothes in most cases.
Underwear, pantyhose, stretch pants, and Jockey-type shorts will not get in the way of your ostomy bag or stoma.
If you lost weight before your surgery from your illness, you may gain weight afterward. You may need to wear bigger clothes.
Going Back to Work and Day-to-Day Life
Your provider will tell you when you can go back to work. Ask your provider what activities you can do.
People with ileostomies can do most jobs. Ask your provider if your type of work is safe to do. As with all major surgeries, it will take time for you to get stronger after your operation. Ask your provider for a letter you can give to your employer that explains why you need time off work.
It is a good idea to tell your employer, and maybe even a friend at work, about your ileostomy.
Heavy lifting may harm your stoma. A sudden blow to the stoma or pouch may also harm it.
Being Intimate With Your Partner
You and your partner will probably have worries about your ileostomy. You may both feel uncomfortable about it. Things may not go smoothly when you begin being intimate again.
Contact between your body and your partner's body should not harm the ostomy. The ostomy will not have a bad odor if it is tightly sealed. To feel more secure, ask your ostomy nurse for a special wrap that may help protect your ostomy.
Talking openly about your feelings will help intimacy get better over time.
An ostomy should not keep you from being active. People with ostomies:
- Run long distance
- Lift weights
- Play most other sports
Ask your provider which sports you can take part in once you get your strength back.
Many providers do not recommend contact sports because of possible injury to the stoma from a severe blow, or because the pouch may slip, but special protection can prevent these problems.
Weightlifting could cause a hernia at the stoma.
You can swim with your pouch in place. These tips may help:
- Choose bathing suit colors or patterns that will hide your ostomy.
- Women can get a bathing suit that has a special lining, or they can wear stretch panties under their bathing suit to hold the pouch in place.
- Men can wear bike shorts underneath their bathing suit, or wear swim trunks and a tank top.
- Always empty your pouch before swimming.
American Cancer Society website. Ileostomy guide. www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/ostomies/ileostomy/management.html. Updated October 16, 2019. Accessed November 9, 2020.
American Cancer Society website. Living with an ostomy. www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/ostomies/stomas-or-ostomies/telling-others.html. Updated October 2, 2019. Accessed November 9, 2020.
Mahmoud NN, Bleier JIS, Aarons CB, Paulson EC, Shanmugan S, Fry RD. Colon and rectum. In: Townsend CM Jr, Beauchamp RD, Evers BM, Mattox KL, eds. Sabiston Textbook of Surgery. 20th ed. Philadelphia, PA: Elsevier; 2017:chap 51.
Raza A, Araghizadeh F. Ileostomy, colostomy, and pouches. In: Feldman M, Friedman LS, Brandt LJ, eds. Sleisenger and Fordtran's Gastrointestinal and Liver Disease. 11th ed. Philadelphia, PA: Elsevier; 2021:chap 117.