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A Guide for Patients With an Ileostomy or Colostomy

This information will help you care for your ileostomy or colostomy.
 
An ostomy is an opening created during surgery, in which a piece of your intestine is brought to the outside of your abdomen (belly). It is created so that stool and gas can exit your body. The part of your intestine that is on the outside of your body is called a stoma. Your stoma will look red and moist, similar to the inside of your mouth. Your stoma will be swollen right after surgery, but the size will decrease in 6 to 8 weeks. You will not feel any pain or pressure within your stoma. You will also not feel any sensations of heat or cold.
 
Some ostomies are permanent, while others are temporary. Your surgeon will tell you if your ostomy is permanent or temporary.
 
Having an ostomy is a big adjustment for most people. We have written this resource with the help of people who have an ostomy. We hope it will help prevent problems and give you tips that can make your daily life easier. Your Certified Wound, Ostomy, Continence Nurse (CWOCN) will go over this information with you.
 

Types of Ostomies

An ostomy can be made out of the small intestine or colon (large intestine). When a piece of the small intestine is used to create an ostomy, it is called an ileostomy. When a piece of the colon is used to create an ostomy, it is called a colostomy.
 
The consistency of stool differs depending on the part of the intestine that is used to create the ostomy. The stool may be liquid, soft, or solid.
 
The most common types of ostomies are listed below.
 

Ileostomy

  • Created out of the part of the small intestine called the ileum.
  • Stool is liquid or semiliquid.
  • Stoma is usually located on the right lower side of the abdomen.

Ascending colostomy

  • Created out of the ascending colon.
  • Stool is liquid or semiliquid.
  • Stoma is usually located on the right side of the abdomen.

Descending colostomy

  • Created out of the descending colon.
  • Stool is usually soft.
  • Stoma is usually located on the left side of the abdomen.

Sigmoid colostomy

  • Created out of the last part of the colon.
  • Stool can be soft or firm.
  • Stoma is usually located on the left side of the abdomen.

Loop ostomy

  • Can be made out of any part of the small intestine or colon.
  • There are 2 openings in the stoma instead of one. Many times, only one opening can be seen. This type of ostomy is often temporary.
In some surgeries, a second opening is created on the abdomen called a mucous fistula. It secretes left over stool or a mucus-like fluid and leads to the rectum. If you have a mucous fistula, your CWOCN will teach you how to care for it while you are in the hospital. Usually, a small pouch or dressing is placed over the mucus fistula. It will need to be cleaned with water and emptied. Once there is no drainage, the mucus fistula can be covered with a pad and tape.
 

Learning to Care for Your Stoma and Ostomy

Your CWOCN and nursing staff will teach you how to care for your stoma and ostomy while you are in the hospital. When you are discharged from the hospital, you will be given the basic supplies you need to care for your ostomy. Then, you will order the supplies from a medical supplier. There is a list of medical suppliers at the end of this resource.
 
You will also be set up with a visiting nurse, who will come to your home after you are discharged from the hospital. He or she can help you care for your stoma and adjust to being home. If you have any questions or problems once you are home, call your CWOCN or social worker.
 

Pouching systems

After your surgery, you will wear an odor-proof pouch over your ostomy. Pouching systems include a 1-piece or 2-piece system. Both kinds include a wafer (skin barrier) and a collection pouch. Together, these are referred to as an “appliance.” The pouch (1- or 2-piece) attaches to your abdomen by the wafer and is fitted over and around your stoma to collect your stool and gas. The wafer protects the skin around your stoma from getting irritated by stool leakage.
 
Your CWOCN will help you find the best pouching system for your stoma. Please note that as the size of your stoma changes, you may need to change your pouching system.
 
Some people find it helpful to buy incontinence bed pads or cloth underpads to place over bed sheets. This protects the bed in case the pouch leaks accidently during the night.
 

Emptying your pouch

Empty your pouch when it is one-third to one-half full. The pouch should not become overly full. Your CWOCN will teach you how to empty your pouch.
 
If you squeeze every bit of air out your pouch, the sides are likely to stick together and make it more difficult to collect stool. There are lubricants to help with this. This is more of an issue if your stool output is thicker. If you have thinner output, you can put something in the pouch to thicken it.
 

Changing your appliance

Your CWOCN will teach you how to change your appliance. Generally, you should change your appliance every 3 to 5 days. If you have leakage, change it immediately. This is to protect the skin around your stoma from getting irritated from stool leakage. If you are having any leakage or irritation that has lasted for a few days, call your CWOCN.
 

Lifestyle Issues

Body image and depression

After people learn that they have cancer, they often view their bodies in a different way. Surgery, chemotherapy, and radiation therapy can change the way a body looks and works. This may be especially true when someone has a new ostomy. Some people feel disgust. This is normal given the shame in our culture of talking about bowel functions. Other people feel sadness at the loss or change in their bodies. They view their ostomy with negative thoughts and feelings. However, others view their ostomy more positively and see it as an answer to troublesome symptoms (such as bowel incontinence) or as the path to survival. You may have both positive and negative feelings. As you adjust to living with an ostomy and get used to how it looks and works, you will feel better about your body. It may help you cope better if you:
 
  • Look at your stoma to help you get comfortable with it.
  • Remind yourself about the positive aspects of your ostomy, such as its role in possibly prolonging your life.
  • Talk with other people with ostomies. You may learn good coping techniques and this may help you regain a sense of normalcy.
  • Get counseling to help you improve your body image, feelings, and quality of life. At Memorial Sloan Kettering Cancer Center (MSK), counseling is available from social workers and at the Counseling Center. You can reach the Social Work Department at (212) 639-7020 and the Counseling Center at (646) 888-0200.

Nutrition

Your doctor will give you dietary guidelines to follow after your surgery. A dietitian will see you while you are in the hospital to review these guidelines with you.
 
Below are some recommended guidelines if you have an ileostomy:
 
  • Stay well-hydrated.
    • Drink 8 to 10 (8-ounce) glasses of liquids a day.
    • Limit your intake of caffeine and alcohol, as they can dehydrate you.
    • Limit foods high in fiber and simple sugars (e.g., glucose, sucrose, fructose), as they can dehydrate you.
  • Keep in mind that the foods that disagreed with you before your surgery will have the same effect after your surgery. If you feel bloating and pain after eating a certain food, remove this food from your diet. Try eating it again in a few weeks. If you are still having pain and bloating after eating this food, avoid it.
  • Some people with ostomies choose to limit gas by regulating their diet. The following can increase gas:
    • Foods such as cabbage and broccoli
    • Carbonated beverages
    • Drinking through a straw
    • Chewing gum
  • If you have tried limiting gas and still have a problem, talk with your CWOCN. He or she may suggest using pouches with charcoal filters. The filter can help prevent the buildup of gas and avoid inflation of the pouch. Some people also find it useful to use pouches with filters for airplane travel.
    • Do not prick your pouch to release built-up gas because this will destroy the pouch’s odor proof system.
    • Do not rinse your pouch with water, as this will deactivate the filter.
  • If you are constipated:
    • Increase your liquid intake.
    • Eat foods that are high in fiber, such as fruits, vegetables, and bran.
    • Walk, if the weather allows.
If you have an ileostomy, do not take any kind of laxative. It can cause severe dehydration and other problems.
 
  • Call your doctor if you:
    • Vomit
    • Have a colostomy and have not passed any stool for 3 days
    • Have an ileostomy and have not passed any stool for 3 to 6 hours
    • Develop abdominal pain or symptoms of dehydration (this is more common for those with an ileostomy), including:
      • Increased thirst
      • Dry mouth
      • Loss of appetite
      • Weakness
      • Decreased urine output or dark amber urine
      • Muscle, abdominal, or leg cramps
      • Feeling faint
      • Increased stool output or changes in consistency of stool
      • Increased frequency of emptying pouch

Medication

If you have an ileostomy, your body may not be able to completely absorb some medications. This can happen because of the decrease in the length of your bowel and because some medications are absorbed slowly. This happens most often with:
 
  • Pills with enteric coating (a special coating that prevents pills from being absorbed until they reach the small intestine)
  • Sustained-release medications (designed to release a medication in the body slowly over an extended period of time)
Ask your doctor if you are taking any of these medications. If you see a tablet in your pouch that is not absorbed, call your doctor. 
 
Do not crush pills unless your doctor or pharmacist says it is okay. Taking crushed pills can cause irritation or interfere with digestion. 
 

Exercise

Talk with your doctor about what exercise is right for you. For most people, walking and light stretching are good exercises to do while recovering from surgery. You should avoid lifting or pushing anything heavier than 10 pounds for 2 to 3 months after your surgery. This includes housework such as vacuuming or mowing the lawn. If this will be a problem for you, talk with your doctor.
 
Do not do sit-ups, pushups, or any strenuous exercise for 2 to 3 months after your surgery. This will help prevent a hernia or weakening of a muscle near your stoma. It will also help prevent a stomal hernia (bulging out of your stoma).
 

Odor control

Appliances are designed to be odor proof. Unless you are leaking stool underneath the wafer, there should be no odor while the appliance is attached. However, if odor is a problem for you, there are deodorants that you can put into the pouch to help. Some examples are drops, charcoal tablets, or lubricating gel. You may need to experiment to find one that works best for you. There are also deodorants you can take orally (by mouth) to decrease fecal odor. Check with your doctor or nurse before using any of these.
 
Many pouches have a built-in charcoal filter. This vents the gas and filters it at the same time to prevent odor. There are also filters that can be bought separately and attached to the pouch, or you can apply a small plastic vent on each pouch. This vent allows gas to be released without opening the pouch.
 
Some people find it useful to empty the pouch at bedtime. This is done because gas could continue to build overnight and fill the pouch.
 

Sexual activity

Talk with your doctor about when it is safe to resume sexual activity. Generally, after your incision is healed, you can resume sexual activity. This usually takes about 2 months. As long as excessive pressure is not placed on your stoma, there should be no harm done to it. Do not use your stoma as a sexual orifice.
 
For many people, returning to a normal sex life will come naturally. This happens as your concerns decrease and your feelings about your body become more positive. Try to stay intimate with your partner as much as possible. Use kind words, meaningful touch, and hugs.
 
Check to see if your appliance fits well and if there is any odor. Some people prefer to cover their appliance with a cloth band, shirt, or lingerie during sexual activity. You can buy ready-made covers from many ostomy supply companies. Some companies also make a pouch with a cotton cover attached to it.
 
You may also be able to plan your sexual activity for times when you are less likely to be actively draining, such as after irrigation, if you are able to do so (for more information about irrigation, see the section titled “Frequently Asked Questions About Ostomy Care”).
 
Talk with your doctor or nurse if surgery or radiation therapy caused changes that make it hard to have sex. Examples are erectile dysfunction (inability to develop or maintain an erection) in men or vaginal dryness or tightness in women. If these problems do not get better, you can talk with a sexual health specialist. MSK has a Sexual Health Program to help people address the impact of their disease and treatment on sexuality. 
 
  • Female Sexual Medicine and Women’s Health Program: call (646) 888-5076 for an appointment
  • Male Sexual and Reproductive Medicine Program: call (646) 422-4359 for an appointment
The United Ostomy Associations of America, Inc. (www.uoaa.org or 1-800-826-0826) has information on sex for both men and women with ostomies.
 
Other good sources of information are the following resources published by the American Cancer Society. You can get these resources by calling 1-800-ACS-2345 or by going to the links below.
 

Sexuality for the Man With Cancerwww.cancer.org/acs/groups/cid/documents/webcontent/002910-pdf.pdf

Sexuality for the Woman With Cancerwww.cancer.org/acs/groups/cid/documents/webcontent/002912-pdf.pdf

Showering, bathing, and swimming

You can shower with your appliance on or off. You can also use waterproof tape around the edges of the wafer. Depending on your skin and the type of pouch, you can place a piece of plastic over the whole appliance. This will prevent it from getting wet.
 
When you take a bath or swim, keep your appliance on. Most people can wear the same swimsuit they wore before their surgery. However, it may not be possible to wear hip-high swimsuits for men or hip-high, two-piece swimsuits for women.
 

Work

You can go back to work as soon as you feel ready and your doctor approves. Unless you tell them, people will not know that you have an ostomy. It is highly unlikely that the appliance will be visible. You will probably be able to wear all of the same clothes you wore before your surgery.
 

Travel

Bring extra appliances with you wherever you go, even if it is only a short trip or a doctor’s appointment. If you are going to be away from home for several hours, think about where you are going and mentally prepare yourself. Some people feel anxiety the first few times they venture outside their homes. If you feel anxious, your stress may be reduced by thinking ahead. First, think about where the bathroom is located and what you may need. Second, get the supplies you plan to take with you. Place 2 of every item in a travel bag. This way, if you have an emergency or are away from home longer than you expected, you will be prepared. Remember to bring:
 
  • Pouches
  • Wafers
  • Clamps (if you have a pouching system with a clamp closure)
  • Paper towels
When you are traveling by air:
 
  • Pack your ostomy supplies in at least 2 places, such as in your carry-on and checked luggage.
  • Take extra supplies in case you are stranded where supplies may not be available.
  • You may want to bring a letter from your doctor stating your need for ostomy supplies, as well as a private area be used in case of an extended search by TSA agents.
  • If you are traveling to a foreign country, it is a good idea to have critical ostomy information written in that language. One of the 70 member associations of the International Ostomy Association (www.ostomyinternational.org) may be able to help with this translation, as well as with locating supplies while visiting their country.
  • You may want to carry photocopies of the catalog pages displaying and explaining your equipment for TSA agents.

Frequently Asked Questions About Ostomy Care

What is irrigation and will I be able to do it?

Irrigation is a type of enema that eliminates the need for wearing a pouching system over the stoma. This means you would not have any stool between the irrigations. Irrigation is done every day or every other day. People who have a sigmoid colostomy may be able to irrigate. Most people who have had an abdominal perineal resection have a sigmoid colostomy. People with an ileostomy should never irrigate because it can cause dehydration.
 
You also cannot irrigate:
 
  • If you have a stomal hernia (bulge around the stoma).
  • While you are receiving chemotherapy.
  • While you are receiving radiation therapy.
Ask your doctor or CWOCN for more information about irrigation.
 

What color should my stoma be?

Your stoma should be a deep pink or red color at all times. While it is contracting and expanding to move stool out of your body, you may notice a slight change in its color. This should only be for a few seconds to a minute. If your stoma looks grey, brown, or black, call your doctor immediately.
 

Is it normal for my stoma to bleed when I touch it or change my appliance?

Your stoma has many blood vessels, so it may bleed easily with touch or irritation. It is common to have a small amount of blood on the tissue when cleaning your stoma. The bleeding should stop on its own within a few minutes. If you are on a blood thinner or aspirin, you may bleed more easily and for a longer period of time. If you bleed a lot or if the bleeding does not stop after 5 to 10 minutes, appy pressure to the area and call your doctor. If you notice blood in your stool or coming from the inside of your stoma, call your doctor immediately.
 

The area around my stoma seems to bulge. Is this normal?

If you have a change in the curve around your stoma, tell your doctor or CWOCN. You may have a stomal hernia. Often, this happens because the abdominal wall muscle is weak and this causes a bulge to form in the area of the stoma. Your doctor or CWOCN will examine you to see if you have a stomal hernia.
 
Often, people with a stomal hernia do not have any symptoms. Surgery is not needed unless you have a complication, including a blockage or twisting of the herniated bowel. If you have any of the following symptoms, call your doctor or nurse:
 
  • Nausea
  • Vomiting
  • Pain
  • Abdominal bloating and lack of gas and stool in your pouch
If you have a stomal hernia, your CWOCN can measure you for a custom-made hernia support belt. These belts do not cure the hernia, but they can prevent it from getting worse by giving it support. A girdle or biking shorts with a hole cut out for your pouch may also work well as an alternative to the custom-fitted hernia belt.
 

How do I wear a belt over my stoma?

Try to wear the belt above or below your stoma. If the belt is worn directly over your stoma, it can cause:
 
  • Irritation
  • Bleeding
  • An overgrowth of tissue
While you are wearing the belt, position your pouch downward or to the side. You can also fold it, depending on your preference.
 

What do I do if I have leakage of stool under my wafer?

If you are having leakage, tell your CWOCN. You may need a different pouching system that fits better to avoid this problem.
 

Is there anything I should do to prepare for tests, such as scans with contrast?

Always take an extra set of supplies when going to the doctor for tests because you may have to remove your appliance.
 
If you live 1 hour or longer away from the hospital, be ready to change or empty your bag during the trip home. The contrast may empty into your pouch in 1 or 2 hours, but it can take longer.
 

Do I need to wear gloves when I change my appliance?

This is a personal choice. There is no risk of infection from changing your appliance. However, some people prefer to wear gloves because some stool could come into contact with your fingers.
 

If I have an ileostomy, is it normal to still pass stool or mucous from my rectum?

Depending on the type of surgery you had, you may pass left over stool or mucous from your rectum. This should decrease over time, but it may be useful to wear a pad and apply a zinc ointment such as Desitin® around your anus to prevent irritation.
 

What should I do if I am admitted to the hospital?

If you are admitted to the hospital, you may want to bring 1 or 2 extra sets of supplies with you, just in case they stock a different product or they have run out of the product you use.
 

Support Groups

You may find it helpful to join a support group for people with ostomies. MSK has a virtual program for people with ostomies. This is a live, online support group in which people can share their experiences and provide practical and emotional support for one another. Discussions are cofacilitated by a social worker and nurse. The group is open to all MSK and non-MSK patients. The group is held every other month on the 3rd Thursday of the month from 4:00 pm to 5:00 pm. To learn more about the program, or to register for the program, please contact: virtualprograms@mskcc.org
 
On the United Ostomy Associations of America (UOAA) website, you can search for UOAA-affiliated online and in-person support groups for people with ostomies. To find a group, go to: www.ostomy.org/supportgroups.shtml
 

Ordering Supplies

Speak with your CWOCN about ordering supplies. He or she is familiar with the latest products on the market. You can also call companies and ask for samples of their products.

 

 

Mail order medical supply companies

Listed below are some mail order medical supply companies. Some accept Medicare and other types of insurance. Call the company directly to see if they take your insurance. If they do not, call your insurance company to get a list of suppliers that do. These companies will mail the supplies to you every month. You do not usually need a prescription to order the supplies. The company will work with your doctor’s office and your insurance company. These companies offer a wide variety of products. Call and ask for their catalog or view it online.
 
Byram Healthcare
(877) 902-9726
 
CCS Medical
1-800-260-8193
 
Edgepark Medical Supplies
(888) 394-5375
 
Landauer Metropolitan
(800) 631-3031
(Accepts Medicaid in New York State)
 
Liberty Medical
1-800-723-9558
 
Sterling Medical Services
1-888-907-8775
 
You can also buy ostomy supplies at local pharmacies and medical supply stores. However, the prices may be higher due to a low volume of supplies or because they may not take your insurance.
 

Ostomy product manufacturers

Listed below are companies that manufacture ostomy products. These companies make products, such as wafers and pouches, and ostomy accessories, such as pastes, powder, rings, etc. Many of these companies also have CWOCNs on staff to answer questions. Feel free to call and ask for samples of products.
 

 

Coloplast Corporation
1-800-533-0464
 
ConvaTec Professional Services
1-800-422-8811
 
Cymed
1-800-582-0707
 
Hollister, Inc.
1-888-740-8999
 
Marlen Manufacturing & Development Company
(216) 292-7060
 
Nu-Hope Laboratories, Inc.
1-800-899-5017
 

MSK Support Services

(646) 888-4740
At MSK, care doesn’t end after active treatment. The RLAC Program is for patients and their families who have finished treatment. This program has many services, including seminars, workshops, support groups, counseling on life after treatment, and help with insurance and employment issues.
 
Social Work Department
(646) 888-5271 or (646) 888-5203
Social workers help patients and their families and friends deal with issues that are common for cancer patients. They provide individual counseling and support groups throughout the course of treatment, and can help you communicate with children and other family members. Our social workers can also refer you to community agencies and programs, as well as financial resources if you’re eligible.
 
Sexual Health Program
For women: (646) 888-5076
For men: (646) 422-4359
MSK's Sexual Health Program helps patients address the sexual impact of their disease and treatment. You can meet with a specialist before, during, or after your treatment.
 

Resources

Books

100 Questions & Answers about Colorectal Cancer
Authors: David Bub, Susannah L. Rose, and W. Douglas Wong
Boston, MA: Jones and Bartlett Publishers; 2003
 
The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies
Authors: Barbara Dorr Mullen and Kerry Anne McGinn
Boulder, CO: Bull Publishing; 2008
 
The Complete Financial, Legal, and Practical Guide for Living With Cancer, HIV, and Other Life-Challenging Conditions
Author: David Landay
New York, NY: St. Martin’s Press; 1998
 
Positive Options for Living with Your Ostomy: Self-Help and Treatment
Authors: Craig A. White and Robert W. Beart Jr.
Alameda, CA: Hunter House; 2002
 
The Human Side of Cancer: Living With Hope, Coping With Uncertainty
Authors: Jimmie Holland and Sheldon Lewis
New York, NY: Harper Collins Publishers; 2000
 

Organizations

Cancercare
1-800-813-HOPE (4673)
National nonprofit organization that provides free help to people with all cancers. Services include counseling, education, information, and financial assistance.
 
Caregiver Action Network
Provides support to caregivers of those who are ill, elderly, or disabled. Works to provide caregivers with support, empowerment, education, and advocacy.
 
Colon Cancer Alliance (CCA)
(877) 422-2030 (toll-free helpline)
National nonprofit patient advocacy organization dedicated to screening, access, awareness, advocacy, and research related to colon cancer.
 
Crohn’s and Colitis Foundation of America
1-800-932-2423
Works to find a cure for and prevent Crohn’s disease and ulcerative colitis. Aims to improve the quality of life for people living with these diseases through research, education, and support.
 
C3Life.com
Website dedicated to helping people with ostomies live their lives to the fullest. Online community includes a discussion forum, recipes, blogs, hints, and tips.
 
Gilda’s Club New York City
195 West Houston St.
New York, NY 10014
(212) 647-9700
Provides meeting places for people living with cancer and their family and friends. Gives people a place where they can meet others to build support systems. Offers free support and networking groups, lectures, workshops, and social events.
 
International Ostomy Association (IOA)
Works to improve the quality of life for people who have ostomies or related surgeries.
 
National Ovarian Cancer Coalition (NOCC)
(888) 682-7426
Works to increase awareness of ovarian cancer and to improve the survival rate and quality of life for women with ovarian cancer.
 
NCI’s Cancer Information Service
1-800-4 CANCER
A federally funded cancer education program that provide accurate, up-to-date, and reliable information on cancer that is easy to understand.
 
Ovarian Cancer National Alliance (OCNA)
(866) 399-6262 (toll free)
Works to put ovarian cancer on the agenda of policy makers and women’s health leaders.
 
Shaz’s Ostomy Pages
Provides easy-to-understand information about ileostomy, colostomy, and urostomy surgeries.
 
United Ostomy Associations of America, Inc. (UOAA)
1-800-826-0826
A volunteer-based health organization that supports people who have had or will have intestinal or urinary diversions. This includes providing education, information, support, and advocacy.
 
Women’s Cancer Network
(312) 578-1439
Works to inform women around the world about gynecologic cancers. Provides a personalized risk assessment tool to assess risk for gynecologic and breast cancers.
 
Wound, Ostomy, Continence Nurses Society
(888) 224-WOCN (9626)
Members are experts in the care of people with wounds, ostomies, and continence disorders.