Ostomies

Some survivors are living with an ostomy after cancer treatment. An ostomy is a surgical opening from an organ inside the body to the outside of the body. This allows waste products to empty into a pouch outside the body. Knowing how to manage daily life with an ostomy can help you live your life with confidence.

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Ostomies: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources

The word ostomy means opening. An ostomy is a surgical opening from an organ inside the body to the outside of the body. It allows for drainage from the body to the outside or for entry of nutrients into the body and can be created from different parts of the body. The opening on the surface of the body is called a "stoma." Many survivors with an ostomy refer to it as a "stoma."

Due to surgical advances, a relative few number of cancer survivors need an ostomy. For example, surgeons now have surgical instruments that allow connection of the rectum back to the colon with less tissue than once was required for patients with rectal cancer. But for those who do require an ostomy, it is often a life-saving surgery.

Although about 100,000 ostomy surgeries are performed annually, many are for conditions not related to cancer. This document will focus on the most common ostomy types for in cancer survivors:

• Colostomy: A surgical opening from the large bowel or colon to the abdomen to allow fecal matter to pass to the outside of the body.
• Ileostomy: An opening in the ileum, a part of the small bowel, to the abdomen. Small bowel contents can pass through to the outside of the body.
• Urostomy: An opening in the urinary system where urine can pass to the outside.

Less common types of ostomies are:

• Jejunostomy: Opening into the jejunum, a part of the small bowel, to allow feeding.
• Gastrostomy: Opening from the stomach to the outside of the body, to allow feeding.
• Tracheostomy: Opening from the trachea to protect the airway.
• Internal ostomies: A surgical opening between two internal organs rather than bringing one opening out to the surface of the body.

Who might need an ostomy?

Ostomy surgery can be performed on people of all ages, including infants. A small number of patients may require two ostomies: one into the bowel and one into the urinary system.

The most common types of cancers where ostomies may (but not always) be performed are:

• Ovarian cancer: Cancer of the ovaries may spread in the abdominal cavity, obstructing either the small or large intestine and could require an ileostomy or colostomy.
• Small bowel cancer or ovarian cancer: If cancer has spread to the small bowel an ileostomy may be made.
• Rectal cancer: If the rectum is removed, a colostomy is made.
• Cervical cancer: Because the cervix and the uterus are between the bladder and the rectum, there may be a urostomy or colostomy.
• Bladder and urethra cancer: If either the bladder or urethra is removed, a urostomy is formed.
• Small intestine cancer: If cancer affects the small bowel, an ileostomy may be formed.
• Colon cancer: Depending on the location of cancer in the colon, a colostomy may be required.
• Prostate cancer: Because the prostate lies just above the rectum, surgery or radiation to the area may require a colostomy.
• Uterine cancer: Because the uterus lies below the bladder and above the rectum, surgery or radiation to the area may require a colostomy or a urostomy.

There might be a need for an ostomy if cancer spreads to the bladder or rectum. This is more likely in cancers of body parts close to the bladder and rectum, such as cervical cancer and prostrate cancer.

When might a survivor need an ostomy?

Ostomies can be temporary or permanent. A temporary ostomy may be performed to allow healing to an area of the bowel or bladder below the ostomy. A permanent ostomy may be needed if the location of the cancer requires that the end of the colon (rectum), the entire colon, or the entire bladder be removed.

Most ostomies for cancer survivors are done during the first stages of surgical treatment to remove the cancer. However, some may be done months or years later, if there are changes to tissue that was treated with radiation. If cancer affects the bowel or bladder, there may be a need for a colostomy, a urostomy, or in rare situations, both.

An ostomy may also be needed because of treatment side effects from radiation therapy or surgery. For example, radiation to the prostate or cervix may cause a change in the bowel or bladder that interferes with elimination.

Examples of spread of cancer that can require ostomies include:

• Cancers of the lymph nodes that spread to the bowel
• Cancer of the cervix that spreads to the bladder

Examples of side effects from treatment that may require ostomies include:

• Severe bladder or bowel irritation
• Chronic bleeding after radiation to the uterus, bowel or prostate gland
• Bowel obstruction after surgery

What changes might an ostomy require?

A person with an ostomy can lead a normal life. However, there may be a need to think or do some activities differently. Work with your health care team to identify ways you can make any needed adjustments in areas such as the following:

• Work: It is possible to resume normal work activities. People with ostomies are from all walks of life including professional athletes, teachers and lawyers.
• Recreation: People with ostomies generally continue to do the activities they enjoyed before surgery including exercising, biking, swimming and hiking.
• Diet: Individuals with an ostomy quickly learn about the best foods for them as well as about the foods that cause discomfort or other problems.

  Suggestions for dietary issues following an ostomy include the following:

  • Colostomy: Foods that cause gas or odor are the same foods that were likely a problem before the ostomy. Common culprits can be beans, onions, cabbage, and spicy foods. If you have this concern, try to avoid those foods.
  • Ileostomy: Certain foods need to be chewed very well or avoided if they cause cramping or difficulty passing through the ostomy. These include corn, popcorn and nuts. It is also important to know which foods cause diarrhea. Because the drainage is liquid, diarrhea can cause an excessive loss of fluids and lead to dehydration. Taking in enough fluids is very important when that happens.
    
• Medications: Inform your pharmacist if you have an ostomy. There are certain medications that can cause difficulties with a colostomy or urostomy.
  
  
  • Colostomy: Medication-induced constipation can be a problem. Sedatives and pain medications are associated with constipation.
  • Urostomy: Some medications can cause urinary stones. If you are taking a fluid pill, be aware that your pouch will need to be emptied more frequently. Many survivors with a urostomy take vitamin C for odor control.
  • Ileostomy: An ileostomy involves the small bowel and medicine is absorbed in the small bowel. Ask your pharmacist about the effects of your medications. Also, talk with your health care team about which medicines to take.
    
• Tablets and capsules must dissolve before they are absorbed. A sustained release 12-hour medication may not work well if you have an ileostomy. The pill might be eliminated through the ileostomy without being properly absorbed. A liquid formation of your medication may work better because it is absorbed faster.
• Antibiotics and antacids can cause diarrhea in a survivor with an ileostomy.
• Clothing: The same clothing can typically be worn as before surgery. Loose clothing may feel more comfortable over the pouch. However, many survivors with an ostomy wear bathing suits or other close-fitting clothes without difficulty. The best rule is to wear clothes that feel comfortable.
• Bathing: An ostomy is like the tissue in found in the mouth or anus. Water will not hurt it. Bathing, showering and swimming are okay. The skin around the ostomy needs to be cleansed and dried. The health care team should be informed if redness or special care is needed for the skin under the pouch.
• Sexual activity: There may be feelings of embarrassment because of an ostomy. Some survivors fear rejection from a partner. In most cases, the partner is likely to feel relieved to have you home and not be concerned about these types of changes. Try to have an open discussion about your concerns with your partner.

After surgery, you may want to resume intimacy in stages starting with cuddling, kissing and caressing. As you gain confidence and become more comfortable with your ostomy, you can enjoy your pre-surgery sexual activities. Sexuality is about intimacy with your partner and no cancer treatment or ostomy has to end this important part of who you are.

The ability to resume sexual activities is a sign of adjustment and recovery. If you or your partner have concerns about sexual activity, talk with your health care team.

What may be needed if ostomy surgery is done during cancer treatment?

Some cancer survivors with an ostomy require other cancer therapies along with the ostomy surgery. During these treatments, there may be special needs such as:

• Chemotherapy: A survivor may realize that assistance is needed to care for the ostomy if he or she feels sick or tired after chemotherapy. Some medications may have side effects that affect the ostomy. Let your health care practitioner examine your ostomy during follow-up visits. Take an extra pouch so you can remove yours for the examination. Stop irrigations when you have diarrhea, if you have a colostomy.
• Radiation: Radiation is an integral part of cancer treatment for many survivors. If the ostomy is in the marked field of radiation, you may have to remove your pouch for each treatment. Carry a spare pouch with you for all medical visits because the office may not have a pouch that fits your ostomy.

Radiation may cause skin changes around your ostomy. Make your radiotherapy health care team aware of any changes with your ostomy or your skin. If diarrhea occurs during radiation therapy and you have a colostomy or an ileostomy, alert your nurse. Take your supplies with you to the hospital or clinic. Inform health care providers that you have an ostomy and let them know how about your care methods.

The bodily changes of an ostomy sometimes bring feelings of loss that might affect an individual's body image. Even though having an ostomy can affect many different areas of life, your value as a person has not changed. What has changed is the location and method of your elimination. People will be unaware of your ostomy unless you tell them. You can live a normal and fulfilling life with an ostomy. Your health care team can answer your questions and help you adjust.

This document was produced in collaboration with:

Dorothy B. Smith, RN, MS, CWOCN, FAAN
Vice-President, Clinical Affairs
DesChutes Medical Products, Inc.

Works Cited

Smith, Dorothy B., and Douglas E. Johnson. Ostomy Care and the Cancer Patient. New York: Grune and Stratton, 1986.

Hampton, Beverly G., and Ruth A. Bryant. Ostomies and Continent Diversions: Nursing Management. St. Louis: Mosby YearBook, 1992.

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Ostomies: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

• Learn how others manage their lives with an ostomy.

  Share your concerns and feelings with people you trust. Talking with another person about your feelings and what is causing them can help you understand more clearly what you are feeling and help you find ways to manage your feelings.

  Many survivors are living normal lives with an ostomy. Some have had them for years. Consider joining the United Ostomy Association or finding a support group for cancer survivors with ostomies. Helping another survivor with a new ostomy may help you feel better about your ostomy. The feelings of support, sharing and learning all add to your confidence and self-worth.

  Ways to find out more about support groups in your area:

  • Ask a member of your health care team for suggestions. Most cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
  • Call a nearby cancer center or university hospital and ask about support groups.
  • Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.
    
• Find an ostomy nurse in your community.

  An ostomy nurse can provide support such as:

  • Showing how to care for your ostomy
  • Helping select the right pouch and skin care products
  • Teaching problem prevention techniques
  • Directing to resources in the community
  • Helping prevent problems with your ostomy during follow-up tests or treatments

  To find an ostomy nurse in your area:

  • Ask your health care team.
  • Contact the Wound, Ostomy and Continence Nurses Society at 1-888-224-9626 or online at www.wocn.org.
    
• Learn how to care for your ostomy.

  Make it a goal to become independent in your care unless you are physically unable to care for your ostomy. Independence is a sign of recovery. If you are the parent of a child with an ostomy, the child will likely take on your attitude.

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Ostomies: Additional Resources

The resources listed below provide more detailed information and support services to help you with ostomies.  Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

Email: Send email through the LIVESTRONG website.
Phone: 1-866-673-7205
1-866-927-7205 (Spanish)
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf or hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

Cancer Hope Network
www.cancerhopenetwork.org

Email: info@cancerhopenetwork.org
Phone: 1-877-HOPE NET (1-877-467-3638)
This number is answered Monday-Friday, from 8:00 a.m. to 5:30 p.m. (EST). Voicemail is available after hours.

Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. They offer support by matching cancer patients or family members with trained volunteers who have already undergone and recovered from a similar cancer experience. You can submit your request by phone or by email. A volunteer will try to contact you within 24 hours.

Shop Well with You
www.shopwellwithyou.org

Email: info@shopwellwithyou.org Phone: 1-800-799-6790

The Shop Well with You website offers a number of resources, including articles on body image and information on clothing-specific needs of cancer survivors. The site provides general tips on fabrics, styles and cuts that offer the most comfort for specific physical conditions. Some of the conditions addressed include mastectomy, ostomies, lymphedema and post-surgical recovery. In addition, contact information is provided for stores, catalogs and online retailers that carry these clothing items. Although the site is written for women, some of the stores listed carry items for men and children.

United Ostomy Associations of America, Inc. (UOAA)
www.uoaa.org

Email: info@uoaa.org Phone: 1-800-826-0826

The UOAA is a nonprofit association that works to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers. The website covers a wide range of topics, including types of ostomies, pouching systems, accessories, psychosocial issues, travel tips and care guides (also available in Spanish). Discussion boards for various age groups are provided, as well as links to local and online support groups. The organization also publishes a quarterly magazine, and you can order a subscription (for a fee) through the site.

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