Living with your ileostomy
Standard ileostomy - living with; Brooke ileostomy - living with; Continent ileostomy - living with; Abdominal pouch - living with; End ileostomy - living with; Ostomy - living with
You had an injury or disease in your digestive system and needed an operation called an ileostomy. The operation changed the way your body gets rid of waste (stool, feces, or poop).
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 need to learn to deal with some feelings about the changes to your body. You will also need to learn how the operation has changed your life.
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 doctor or nurse, or a family member you feel close to. Ask your doctor 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 your friends, your family members, and people you work with. This is normal. You do not need to explain everything to everyone, even if they ask.
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. Go by yourself, or take your spouse, another family member, or a friend. It may be helpful for you to get ideas and talk with others who also have had ileostomies. If you have a partner, it can be helpful for both of you to talk with other couples about how they live with an ileostomy.
You should not need special clothes. Your pouch usually cannot be seen under your clothing. It is fairly flat.
Underwear, pantyhose, stretch pants, and jockey shorts do 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 doctor or nurse will tell you when you can go back to work. Ask your doctor what activities you can do.
People with ileostomies can do most jobs. Ask your doctor if your type of work is safe to do. As with all major surgery, it will take time for you to get stronger after your operation. Ask your doctor 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.
Men may have problems staying attracted to a partner who has had an ileostomy. Women who have an ileostomy may have pain or discomfort during sex.
Contact between your body and your partner’s body should not harm the ostomy. To feel more secure, ask your ostomy nurse for a special wrap that may help protect your ostomy.
With open discussion, intimacy will get better over time.
An ostomy should not keep you from being active. People with ostomies run long distance, lift weights, ski, swim, and play most other sports.
Ask your doctor which sports you can take part in once you get your strength back, especially before you do heavy lifting or play contact sports, such as football.
Many doctors 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.
Weight lifting 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.
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Khatri VP, Asensio JA, eds. Subtotal colectomy/panproctocolectomy and j-pouch reconstruction. Operative Surgery Manual. 1st ed. Philadelphia, Pa: Saunders Elsevier; 2003:chap 35.
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Last reviewed 8/17/2012 by Neil K. Kaneshiro, MD, MHA, Clinical Assistant Professor of Pediatrics, University of Washington School of Medicine; and Joshua Kunin, MD, Consulting Colorectal Surgeon, Zichron Yaakov, Israel. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M. Health Solutions, Ebix, Inc.
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