Log in »

A Guide for Patients with a Urostomy: About Your Surgery and Caring for Your Stoma

This information will help you prepare for your urostomy at Memorial Sloan Kettering Cancer Center (MSKCC) and will teach you how to care for your stoma.

“I want them (new patients) to know that they can return to a pretty rewarding life. I was 49 and got to see my kids get married and my grand kids and I'm able to live a pretty happy life.”

“It's scary and frightening when it first happens to you, but you become adjusted quickly. I didn't have any problems.”

“People would tell me, 'You have to have a 'good attitude.' The biggest thing is to have an acceptance of it. You really have no choice. I continued to live my life just as I always did.”

“The anticipation is worse than the realization. Fear of the unknown is the worst. But you live with it. It's not fun (to have to have a urostomy), it's not the end of the world.”

“You live a normal life.”

Before Your Surgery

A cystectomy is a surgery to remove the bladder. The surgeon will create a new storage area from which urine can leave your body. A urostomy is an opening in the abdomen created during surgery. It allows urine to pass out of the body via the bowel. The opening of the ostomy is called a stoma. Ostomy and stoma are terms that are often used to mean the same thing. Having an ostomy is a big adjustment for most people. You may have many questions. We have written this booklet with the help of patients who have had an ostomy. We hope it will help you prevent problems and give you tips that can make your daily life easier.

Anatomy of the Urinary System

The urinary system is made up of organs that make urine and rid it from the body. The system normally includes 2 kidneys. The kidneys produce the urine. Connected to each kidney is a tube that carries urine from the kidney to the bladder. These tubes are called ureters. The bladder serves as a storage area for the urine. Urine remains in the bladder until you feel the need to urinate. Urine is then expelled through the urethra. In women the urethra is a very short tube located at the top of the vagina (Figure 1). In men the tube is longer and passes through the prostate gland and the penis (Figure 2).

Removal of the Bladder

Your bladder must be surgically removed to take out the cancer. As a result, there will no longer be a storage area for your urine. Therefore, a new storage area for the urine will be created. This is called a urinary diversion. The urinary diversion will be located on your abdomen. This is also called an ileal conduit or a urostomy. These terms mean the same thing. During the surgery the bladder is removed and the kidneys are left behind with the two ureters (Figure 3).

A part of the small intestine is separated from the rest of the intestine. The part that is separated is called the ileum (Figure 4) and the ureters are sewn into it. Since the bladder was removed, the urine now flows through this segment to the outside of the body. This is called an ileal conduit. One end of the ileal segment forms an opening on the outside of the body. This allows the urine to leave your body. The end which is visible on the surface of the skin is called the stoma. The stoma is usually made on the lower right side of the abdomen. It is usually about 2 inches from the navel or bellybutton (Figure 5). This surgery will not change your normal bowel function permanently. But, you may have some diarrhea or constipation for a few days or weeks after the surgery.

During this surgery, nearby lymph nodes are also removed. This is done because they may also be affected by the cancer. Other areas may also be removed to make sure all of the cancer is taken out. In men, the following may also be removed:

  • The prostate
  • The seminal vesicles
  • Part of the vas deferens
  • The urethra

In women, the following may also be removed:

  • The entire urethra
  • The top wall of the vagina
  • The uterus, fallopian tubes, and ovaries

How to Prepare Before Surgery

Your nurse will give you the booklet Getting Ready for Surgery. Tests will be done to make sure that you are ready to undergo the surgery. These tests include:

  • Blood tests
  • An electrocardiogram (EKG)
  • A chest x-ray
  • Other tests that your doctor may believe are necessary

The nurse will also give you bowel prep instructions for the day before surgery. Your nurse will go over what you can expect right before and after surgery.

Before surgery, the CWOCN may look at your abdomen to decide where your stoma should be. He or she will mark the site. This will guide your doctors as they create your ileal conduit. Every effort will be made to create the stoma in an area that you can easily see and reach. However, your doctor will make a final decision about where it will be.

Before the surgery the nurses on the unit will:

  • Review the surgery process with you
  • Go over what you need to do before the surgery
  • Go over what you may expect after the surgery

The CWOCN and the nursing staff will answer any questions you or your family may have.

The surgery is done through an incision in your lower abdomen. The surgery lasts about 4 to 5 hours. You may stay overnight in the Post Anesthesia Care Unit (PACU). If you do, you will return to your room the next morning. Your family may check in at the information desk in the main lobby. A nurse will keep them informed of your progress throughout the day. When possible, the nurse will arrange for your family to see you in the PACU.

After Your Surgery

Right after surgery, you may have some swelling in the genitals and groin. This is normal and will go away after several weeks. You may also notice some discharge through the penis or the vagina. This should also go away over several weeks.

Bowel function is decreased for the first 2 to 4 days after surgery. You may not be able to have solid foods for a few days after surgery. During this time you will receive nutrition through a vein. Some patients need to have a nasogastric tube for a few days after surgery. This tube helps drain the stomach contents if the bowel function is slow to return. You will feel pain after the surgery. Your nurse will give you the booklet Patient Controlled Analgesia. It has information about pain control. Relief from pain will help you to do your coughing and deep breathing exercises. It will also help you become active more quickly.

The goal of the first 4 to 5 days after your surgery is to prevent breathing and circulation problems. These problems can develop right after surgery. Your nurse will help you get out of bed the day after your surgery. It is very important that you move around to aid your breathing and circulation. It is also important for you to cough. This will decrease the chance of you developing breathing problems.

As you recover, you will slowly return to your normal level of functioning. In the meantime, the MSKCC staff is here to help you. The staff can help by providing the care and support you need. You and your family should not hesitate to call upon us.

Learning to Care for your Stoma

Your nurse will describe what is being done as he or she cares for your stoma and changes the pouch. Once you start feeling better, you will learn how to participate in your care. Before you are discharged, you will be able to empty the pouch. You will also try at least one complete change by yourself or with the help of a family member. The CWOCN is available as a resource to you and your family. You will continue to learn how to manage your system with the help of the home care nurse once you are discharged.

Discharge from the Hospital

When you are discharged, you will be given enough stoma supplies to last for a few changes. You will also be given information about how to order new supplies. Your nurse will give you written instructions on how to care for your stoma and change your pouch. The nursing staff can also arrange for a visiting nurse to see you at home. The visiting nurse will help you care for your stoma. If you have any questions or problems once you are home, you can call your CWOCN or your social worker. He or she can answer questions about other resources.

Usually, no special care is needed for your incision. If special care is needed, your nurse will give you instructions. Although your incision may be healed, it will be weak for 3 to 4 weeks after discharge. Avoid any heavy lifting or straining. You may have some pain for the first few weeks after the surgery. If this occurs, take the pain medicine ordered by your doctor. Call your doctor or nurse if you develop:

  • A temperature of 101° F (38.3° C) or higher
  • Chills
  • Swelling
  • Redness around the incision
  • Drainage from the incision

Follow Up Care

You will have an appointment to see your doctor about two weeks after you are discharged. If you have any questions or concerns before this visit you can call your doctor or nurse. At this follow-up visit, your doctor and the CWOCN will:

  • Examine your stoma
  • Examine your wound if you have one
  • Evaluate your overall condition

If you have any questions about your stoma and how to care for it, call your CWOCN. If you need more help at home, call your social worker and tell your doctor and CWOCN. A program of regular follow-up care will help you stay healthy.

Lifestyle Issues

Body Image and Depression

After people learn that they have cancer, they often view their bodies in a different way. Surgery and other treatments can change the way a person's body looks and works. Having an ostomy is a big change. Some people view the ostomy in a positive way. They see it as a solution to troublesome symptoms. These may include not being able to hold your urine or having to urinate often. Some view it as a path to survival. Other people feel sadness at the loss or change in their bodies. They view their ostomies with negative thoughts and feelings. Some people feel a sense of disgust. You may have a mixture of positive and negative feelings.

Body image usually improves with time. Most people adjust to living with an ostomy and grow used to it. Ways to improve coping include the following:

  • Learn everything you can about how to care for the ostomy.
  • Look at your stoma to help you get used to its appearance.
  • Remind yourself about the positive aspects of the stoma. It probably will help you live longer.
  • Talk with other people with ostomies. You may learn good coping techniques and it may help you regain a sense of normalcy.
  • You can meet other people with urostomies at the monthly Bladder Cancer Support Group. Join by calling the Post-Treatment Resource Program at (646-888-4740). You can also ask your doctor's office to give you the name of a patient volunteer to be your telephone/e-mail contact.
  • Seek counseling, if you think it might help. It can help you improve your body image, mood, and quality of life. At MSKCC, you can get counseling from a social worker (212-639-7020) or the Counseling Center (212-639-4770).

Nutrition

Ask your doctor what you should eat after your surgery. After about 6 to 8 weeks, most people should be able to eat what they want. Good nutrition, a balanced diet and drinking enough fluids are important for your health.

You may drink beer and alcohol in moderation if:

  • You are not taking an opioid pain medicine.
  • Your doctor has said it is okay.

Some people notice a slight change in bowel habits after surgery. At first there may be a need to change your diet in order to manage diarrhea or constipation. But, this is usually only needed short term.

Foods that can cause odor are:

  • Asparagus
  • Broccoli
  • Cabbage
  • Eggs
  • Fish
  • Garlic
  • Spices
  • Turnips

Foods that help control odor are:

  • Cranberry juice
  • Buttermilk
  • Parsley
  • Yogurt

Certain medicines and vitamins may cause temporary odor. Examples are:

  • Vitamin B
  • Multivitamins

Drink plenty of fluids without alcohol or caffeine each day. Drinking fluids is an easy way to prevent odor because it makes the urine less concentrated. The amount you need to drink may vary based on your body size and the temperature outside. You should drink enough fluids so that the urine in your bag is a very light yellow or clear. If it becomes dark yellow or orange, that is a sign that you need to drink more fluids. (Beets will turn your urine a reddish color temporarily. Do not worry if this happens.) Foods with protein (meat, fish, eggs) and vitamin C (fruits) help wound healing.

Exercise

Please talk to your doctor about what exercise is right for you. For most patients, walking and light stretching are good exercises for this period. You should avoid lifting or pushing anything over 10 pounds for 2 to 3 months after surgery. This includes housework such as vacuuming or mowing the lawn. If this will be a problem, talk to your doctor. Do not do sit-ups, pushups, and any hard exercise for 2 to 3 months after surgery.

Odor Control

The pouches are designed to be odor proof. There should be no odor while the bag and wafer are attached unless you:

  • Are leaking urine
  • Have a urinary tract infection

Emptying your pouch frequently will help prevent odors. Empty your pouch when it is 1/3 to 1/2 full. It will also help to clean your skin thoroughly during pouch changes. There is no sound or odor from the urine as it enters the pouch. But, if you are concerned about the sound as you move about, there are products that can help. Ask your CWOCN about these products.

If odor is a problem, you can put deodorants into the pouch. Some examples are:

  • M9TM drops
  • Adapt Lubricating Deodorant Gel

You can also use the M9TM spray when you change your appliance. You may need to try more than one to find one that works for you.

Sexuality and Sterility

Talk to your doctor about when it is safe to have sex. Generally, after your incision is healed you may resume normal sexual activity. This usually takes about 2 months. As long as excessive pressure is not placed on the stoma, there should be no harm to it. The stoma should not be used as a sexual orifice.

For many people, returning to a normal sex life will come naturally. This happens as concerns lessen and body image gets better. Try to stay intimate with your partner as much as possible. Use kind words, meaningful touch, and hugs. As time passes, you may become more interested in sex. Take steps to make you and your partner as comfortable as possible. Check to see if your appliance fits well and if there is any odor. Some people prefer to cover the stoma with a cloth band. You can also wear a shirt or lingerie that covers the stoma and appliance. Ready-made covers can be bought from many ostomy supply companies. Some companies make a pouch with a cotton cover attached to it. You might also be able to time your sexual activity for times when you are less likely to be actively draining. This would be after an irrigation.

Women may become sterile if their reproductive organs have to be removed. These organs include the:

  • Uterus
  • Fallopian tubes
  • Ovaries

Men may become sterile if they are unable to ejaculate.

MSKCC has a Sexual Health Program to help patients address the sexual impact of their disease and treatment. You can meet with a specialist before, during, or after your treatment.

  • Female Sexual Health Program. Call (646) 888-5076 for an appointment.
  • Male Sexual Health Program. Call (646) 422-4359 for an appointment.

The United Ostomy Associations of America, Inc. (www.uoaa.org or 800-826-0826) has information on sex for both males and females. Other good sources of information are the free booklets:

  • Sexuality & Cancer: For the Man Who Has Cancer, and His Partner
  • Sexuality & Cancer: For the Woman Who Has Cancer, and Her Partner.

They are available for free from the American Cancer Society. To get a copy call 1- (800)-ACS-2345.

Showering, Bathing, and Swimming

The ostomy products are designed so you can shower with them on. The appliance will dry off quickly after you shower. Some people use a hairdryer to speed the drying process. Set it on low heat and let it blow over the wafer for a few seconds. Shower with the bag on. This keeps water from seeping into the area between the stoma and wafer. If water gets in, the wafer might come loose. You can also use waterproof tape around the edges of the wafer. If you want, place a piece of plastic over the whole appliance. Some patients use a GLAD Press & Seal® or Dry Pro® to cover the appliance. This will prevent the wafer from getting wet. You can also buy a shower protector or stoma cup. If you are changing the appliance, you may shower with it off. Let the water wash over your stoma.

Yes, just as you can shower, you can take a bath or swim. Start off with bathing or swimming for 15 minutes to see how the appliance holds up. Many companies say that you can soak or swim for up to 2 hours. However, how well the appliance sticks to the skin varies from person to person. There are also products available for waterproofing the system. Ask your CWOCN about these products (for example Sure Seal® or Dry Pro®). Most people can wear the same swimsuit they wore before the surgery. Low-waist one-piece swim suits for men may not be possible. Low-waist two-piece swim suits or bikinis for women may not be possible. You can also search the internet for sites with ostomy products. Some have advice on bathing suits.

Travel and Work Concerns

You can go back to work as soon as you feel ready and your doctor approves. Let your doctor know if your job involves repeated heavy lifting. This could cause problems with your stoma.

Unless you tell them, people will not know that you have a stoma. The pouches are designed so that they lie flat and will not be obvious under your clothes. As long as your belt line does not lie directly on your stoma, you may wear all your normal clothes. Women should not wear support girdles unless there is an opening for the pouch. As long as the pouch is fitted with a secure seal, you do not need to worry about odor.

It is best to have spare pouches with you wherever you go, even if it is only a brief trip or a doctor's appointment. If you are going to be away from home for several hours, first think about where you are going and mentally prepare yourself. Some people are unsure the first few times they leave their home. If you feel anxious, reduce your stress by planning ahead. Think about where you are going. Do you know where the bathroom is? Think about what you might need. Gather the supplies you plan to take with you. Place two of every item in a discrete travel bag. This should include:

  • Bags
  • Wafers
  • Paper towels

If you are taking a long trip, bring the amount of supplies that you think you would need. This way you will be prepared. Some people use a leg bag if they know they will be delayed getting to a toilet. Avoid driving for 4 to 6 weeks unless your doctor tells you differently. After this time, if you are driving or taking a plane, you may want to put a pillow between your stoma and the seatbelt. This will help avoid irritation to the stoma.

Frequently Asked Questions

What are the most common skin problems related to urostomies?

The most common skin problems happen when:

  • You get urine under the wafer.
  • You have allergies to your ostomy products.

A common skin problem causes a build-up of tissue. It looks like gray or purple warts and may have white spots. It can cause pain around your stoma. It comes from constant exposure of the skin to urine. To resolve this problem, you may need to:

  • Cut your stoma opening smaller.
  • Change the type of wafer you are using.
  • Apply a barrier to your wafer such as the Colly-Seel™ disc or Adapt barrier ring.

You may also need to treat the skin each time you change your appliance. Mix ¼ cup of white vinegar with 1 cup of water. Soak a gauze with this solution and place it over the skin for five minutes. Rinse it well with water. Then apply a new wafer.

If you have an allergy, you will need to try a different brand of wafer and pouch. If you develop a rash tell your doctor or CWOCN (Certified Wound Ostomy continence Nurse). They can give you something to treat it. Talk to your CWOCN if you have any problems with the skin around your stoma.

What are the signs and symptoms of a urinary tract infection? How do I avoid a urinary tract infection?

The signs and symptoms of a urinary tract infection are:

  • Foul smelling urine
  • Cloudy urine
  • Back pain
  • Nausea and vomiting
  • Loss of appetite
  • Fever
  • Weakness

To prevent an infection, drink 6 to 8 glasses of water or other liquids daily. Avoid large amounts of alcohol and caffeine. Use a pouch with an antireflux valve and a night drainage system. This prevents urine from sitting on your stoma and causing an infection. Empty your pouch when it is 1/3 to 1/2 full. You may want to ask your doctor if you can take vitamin C (about 500mg -1, 000mg daily) and a sugar-free cranberry pill daily. These will increase the acidity of your urine and may help:

  • Prevent urinary tract infections
  • Decrease odor
  • Prevent damage to your skin

What color should my stoma be?

Your stoma should be a deep pink or red color all the time. If your stoma looks grey, brown, or black, contact your doctor right away.

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

The stoma contains many blood vessels and may bleed easily. It is common to have a small amount of blood on the tissue when cleaning the 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 time. Call your doctor or CWOCN if you bleed a lot or if it does not stop after 5 to 10 minutes. If there is blood in your urine or coming from the inside of your stoma, call your doctor right away.

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

You may have a hernia. Often, the abdominal wall muscle is weak. A loop of bowel then causes a bulge to form in the area of your stoma. If you see a bulge around your stoma, contact your doctor or ostomy nurse.

Hernias often do not have any symptoms. They are not treated unless they cause a problem. If the bowel becomes blocked or twisted, it would need to be treated. Call your doctor right away if you have:

  • Nausea
  • Vomiting
  • Pain in the abdomen
  • Swelling in the abdomen

Your ostomy nurse can measure you for a hernia support belt. These belts are custom made and do not cure the hernia but may keep them from getting worse. You can also use a girdle or biking shorts to support the hernia. If you use these, you will need to cut out a hole for the ostomy pouch. The belt or shorts can make you feel more comfortable. They can also pull the area in to help your clothes fit better.

What do I do if I develop leakage of urine under my wafer?

If this is becoming a problem, see your CWOCN. You may need a different system that fits better to avoid leakage.

How do I clean my night drainage system?

Wash it daily with warm water or a 1 to 4 white vinegar and water solution. After you wash it, let it dry. You can also buy cleansers such as M9™ Crystallizer cleansing system. The night drainage bag should be replaced every 2-4 weeks.

How do I find out about the latest products on the market?

Consult with your CWOCN. He or she should know about the latest products on the market. You may also call companies and ask for samples of their latest products. Try doing a search on the web for ostomy products or join an online chat room. Another option is to join a local support group for ostomy patients. Often, other patients know of products that might meet your needs.

Can I wear a clothing belt over my stoma and how do I position the pouch?

Try to wear a belt above or below your stoma. If the belt is directly over the stoma, it may cause:

  • Irritation
  • Bleeding
  • An overgrowth of tissue

You can also wear a stoma guard. This helps to prevent the belt from pressing on the stoma.

The pouch may point directly downward or to the side. It can also be folded if you prefer.

Is there anything I should do to prepare for tests such as a scan with contrast?

If you are having a scan with contrast, you will need to increase your intake of liquids. This is to rid yourself of the contrast. This will increase your urine output. Bring an extra appliance with you. You may need it if you have a leak because of increased urine output. If you live an hour or more away from the hospital, empty your bag before leaving. You may also need to empty it on the trip home or use a leg bag.

If you are going to the doctor for any other tests or chemotherapy, you should bring extra supplies with you. Ostomy supplies are not stocked in all areas and you may need an extra set. Chemotherapy may cause increased urine output. It may also cause a change in skin sensitivity or the way the wafer sticks to your skin. Patients who prefer a 1 piece system may need to switch to a 2 piece system on a short term basis. You may need to switch if you are having a procedure where the doctor or nurse has to access the stoma. If you have any problems please contact your CWOCN.

Do I need to wear gloves when I change the pouch?

That is a personal preference. Just as you didn't wear gloves to wipe yourself before your ostomy, you do not need to wear them now. Some people prefer to because some urine could come in contact with your fingers.

Conclusion

It takes most patients time to adjust to a new ostomy. We hope that the information we have provided here will make it easier for you. However, with time and patience, you will adjust. Your body will heal and you should be able to return to a happy life style. If you have any questions, contact your doctor, CWOCN, nurse, or your social worker. We care and are here to support you.

Definitions of Medical Terms

Cystectomy - surgical removal of the bladder.

Ileal conduit - the part of the small intestine that is connected to the ureters. The end is brought out onto the abdominal wall to drain urine.

Nasogastric (NG) tube - a tube inserted through your nose into your stomach. It is put there to drain gastric secretions. It may be put in after surgery. You may have it for several days to help your intestine regain its normal function.

Ostomy - a surgically-created opening into the gastrointestinal or urinary tract. This is done to eliminate waste products from the body.

Stoma - a part of the gastrointestinal or urinary tract brought out onto the abdominal wall. This is done during ostomy surgery to drain urine from the body.

Urinary diversion - the new storage area for your urine to replace your bladder. This is done with an opening to the outside of the body through the abdomen.

Urostomy - another word for stoma. This is the exit point made on the abdomen from which urine leaves the body.

Urostomy pouch - a disposable pouch with a sticky backing that attaches to the abdomen. It attaches over the stoma to collect urine.

Books

Schoenberg, Mark P. MD FACS & Faculty & Staff of the John Hopkins Genitourinary Oncology Group. The Guide to Living with Bladder Cancer. John's Hopkins University Press Baltimore 2000

Resources at Memorial Sloan Kettering Cancer Center

  • Department of Social Work
    (212) 639-7020

Services are focused on giving support and information to patients and their families. Services are available during inpatient and outpatient visits.

  • Post-Treatment Resource Program (PTRP)
    Memorial Sloan Kettering Cancer Center
    300 East 66th Street, 9th Floor
    New York, NY 10065
    (646) 888-4740

The PTRP has support groups and presentations. The Bladder Cancer Support Group meets every month. Other support groups are also available. Services are also open to people who are done with their cancer treatment. Call the PTRP to find out about all the services.

  • Sexual Health Program
    Memorial Sloan Kettering Cancer Center
    (646) 888-5076 for women
    (646) 422-4359 for men

MSKCC has a Sexual Health Program to help patients address the sexual impact of their disease and treatment. You can meet with a specialist before, during, or after your treatment.

Cancer and Other Resources

American Cancer Society (ACS)
1599 Cliften Rd, NE
Atlanta, Georgia 30329-4251
1-800-ACS-2345

Cancer Care®, Inc.
275 7th Avenue, Floor 22
New York, NY 10001
(800) 813-HOPE
info@cancercare.org
www.cancercare.org

CancerCare is a national non-profit organization. They provide free help to people with all cancers. The services include:
  • Counseling
  • Education
  • Information
  • Referral for and direct financial assistance
Cancer Information Service (CIS)
NCI Office of Cancer Communications
Building 31, Room 10A 16
Bethesda, MD 20892
1-(800)-4 CANCER
The Cancer Information Service (CIS) is a program of the National Cancer Institute. CIS gives information over the phone to cancer patients and their families. The specialists are trained to give up-to-date and clear information. The CIS offices serve specific areas. The offices have information about services and resources in their area. They can be reached by calling 1-800-4-CANCER.
 
Gilda's Club
322 Eighth Avenue, Suite 1402
New York, NY 10001
(888) 445-3248
info@gildasclub.org
www.gildasclub.org
Gilda's Club provides meeting places for people living with cancer and their family and friends. It gives people a place where they can meet others to build support systems. Gilda's Club offers free:
  • Support and networking groups
  • Lectures
  • Workshops
  • Social events in a homelike setting
United Ostomy Associations of America, Inc. (UOAA)
P.O. Box 66
Fairview, TN 37062-0066
(800) 826-0826
www.uoaa.org
The United Ostomy Associations of America, Inc., is a volunteer-based health organization. They work to give support to people who have had or will have intestinal or urinary diversions. This includes providing:
  • Education
  • Information
  • Support
  • Advocacy
MeetAnOstoMate.com
www.meetanostomate.com
MeetAnOstoMate.com is a web site that will help you get in touch with ostomates around the world. You can build your own profile and give others the chance to learn more about you. You can browse other members' profiles, send messages, or join a chat.
 
Bladder Cancer WebCafe
http://blcwebcafe.org
The goal of this website is to help patients:
  • Find answers
  • Relieve some of the fear
  • Reinforce hope
It is also designed to help patient and their loved one find information. The site has an online support forum, survivor stories and email discussion groups.
 
Bladder Cancer Advocacy Network
www.bcan.org
BCAN is the first national advocacy organization dedicated to improving public awareness of bladder cancer and increasing research directed towards the diagnosis, treatment and cure of the disease. It is designed to help patients with the decision making process, offers services, information, resources and educational programs. The interactive website includes an online community.
 
C3Life.com
www.c3life.com
A website dedicated to helping people with ostomies live their lives to the fullest. The online community includes a discussion forum, recipes, blogs, hints, and tips.
 
International Ostomy Association (IOA)
www.ostomyinternational.org/
This association works to improve the quality of life for people who have ostomies or related surgeries.
 
National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
(800) 896-3650
(301) 942-6430
info@thefamilycaregiver.org
www.nfcacares.org

NFCA provides support to people who have to care for a loved one who is ill, old, or disabled. They work to provide caregivers with:

  • Support
  • Empowerment
  • Education
  • Advocacy

NFCA gives support to caregivers who are taking care of people with all kinds of problems. They also address the different relationships that caregivers have with their loved ones. The goal is to address the common needs of all family caregivers.

Shaz's Ostomy Pages
www.ostomates.org
This web site provides information about:
The information is provided by ostomates for ostomates (no “medical speak”).
 
Wound, Ostomy, Continence Nurses Society
15000 Commerce Parkway
Suite C
Mt. Laurel, NJ 08054
(888) 224-WOCN (9626)
wocn_info@wocn.org
www.wocn.org

This is the WOCN professional nursing society. You can use the WOC referral link to find a CWOCN in your geographic region. Members are experts in the care of patients with:

  • Wounds
  • Ostomies
  • Continence disorders
Women's Cancer Network
230 W. Monroe, Suite 2528
Chicago, IL 60606
(312) 578-143
info@thegcf.org
www.wcn.org

The Women's Cancer Network was developed by the Gynecological Cancer Foundation (GCF). They work to inform women around the world about gynecologic cancer. WCN provides a private risk assessment survey tool. Woman can use this tool to assess their risk for developing gynecologic or breast cancer. Visit their web site to:

  • Understand more about the disease.
  • Learn about treatment options.
  • Find cancer treatment specialists.
  • Learn ways to prevent the development of cancer.

Medical Supplies Mail Order Companies

Listed below are some mail order medical suppliers. Some may accept Medicare and some types of medical insurance. Please call the supply company to ask if they take your insurance. If they do not, call your insurance company for 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 products. The company will work with your doctor's office and the insurance company. These companies offer a wide variety of products. Call and ask for their catalog.

Byram Healthcare
(877) 902-9726 (Accepts Medicaid in NY)
www.byramhealthcare.com
 
Edgepark Surgical Inc.
(800) 321-0591
www.edgepark.com
 
CCS Medical
888-724-4357
www.ccsmed.com
 
Mercy Home care and Medical Supplies
(718) 376-3131
Fax: (718) 376-1411
 
Liberty Medical
1-866-486-2379
www.libertyMedical.com
 
Fox Healthcare LLL
(877) Fox-Foxx
 
Landauer Metropolitan
(800) 631-3031 (outside New York)
(914) 665-9050 (within New York)
www.landmetro.com
Accepts Medicaid in NY
 
Marlin Medical Group, LP
(888) 610-9175
www.marlinmed.com
 

Note: 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. We recommend the use of the major distributers as they carry a broader range of supplies, and take insurance. Supplies are delivered within 48 -72 hours or even overnight for emergencies.

Major Ostomy Product Manufacturers

Listed below are major manufacturers of ostomy products. These companies make products such as:

  • Wafers
  • Pouches
  • Barrier rings

The web sites have information about the products and other information that is helpful for people with ostomies. These companies also have ostomy nurses on staff to answer questions. Feel free to call and ask for samples of products.

Coloplast, Inc.
200 South Sixth Street
Suite 900
Minneapolis, Minnesota 55402
(800) 533-0464
www.us.coloplast.com
Product line includes: AC Assura - two piece, Assura, and Coloplast as one and two piece systems.
 
Convatec, A Bristol-Myers Squibb Company
P.O. Box 5254
Princeton, NJ 08543-5254
(800) 422-8811
www.convatec.com
Product line includes: Esteem Synergy, Sur Fit Natura Durahesive two piece, Active Life - one piece system.
 
Cymed Ostomy Company
1440C Fourth Street
Berkeley, CA 94710
(800) 582-0707
www.cymed-ostomy.com
Product line includes Microskin Pouching system - one piece systems.
 
Hollister, Inc.
2000 Hollister Drive
Libertyville, IL 60048-3746
(800) 323-4060
www.hollister.com
Product line includes: New Image Flextend - two piece, Premier - one piece system.
 
Marlen Manufacturing & Development Co.
5150 Richmond Road
Bedford, OH 44146-1331
(216) 292-7060
www.marlenmfg.com
Product line includes: Ultra-Duet - two piece, Ultralite - one piece system.
 
Nu-Hope Laboratories, Inc.
P.O.Box 331150
Pacoima, CA 91333-1150
(800) 899-5017
www.nu-hope.com
Product line includes: Nu-Hope one piece systems, Nu-Flex convex and custom made hernia and prolapse support belts. (Must be measured for the belt)