About Your Bladder Surgery with an Ileal Conduit (Urostomy)

This guide will help you prepare for your bladder surgery at Memorial Sloan Kettering (MSK). It will also help you understand what to expect during your recovery.

Read through this guide at least once before your surgery and use it as a reference in the days leading up to your surgery.

Bring this guide with you every time you come to MSK, including the day of your surgery. You and your healthcare team will refer to it throughout your care.

About Your Surgery

Your urinary system is made up of organs that make urine and get it out of your body (see Figure 1).

  • Your kidneys clean the toxins out of your blood and make urine. You have 2 kidneys.
  • Your ureters are tubes that connect your kidneys to your bladder.
  • Your bladder stores urine until you feel the need to urinate.
  • Your urethra carries the urine in your bladder out of your body when you urinate.
    • In females, the urethra is a very short tube located above the vagina.
    • In males, the tube is longer and passes through the prostate gland and penis.
Figure 1. Your urinary system

Removal of Your Bladder

Surgery to remove your entire bladder is called a radical cystectomy. During this surgery, your surgeon will create a new passage where urine can leave your body. Your bladder will be taken out through an incision (surgical cut) that begins near your belly button and ends at your pelvis.

In addition to your bladder, your surgeon may need to remove other organs near your bladder. This is done to make sure all of the cancer is removed.

In males, the following organs may be removed:

  • Prostate
  • Seminal vesicles
  • Part of the vasa deferentia
  • Urethra

In females, the following organs may be removed:

  • Uterus
  • Fallopian tubes
  • Ovaries
  • Part of the vagina

The lymph nodes near your bladder will also be removed. Lymph nodes are glands that are located throughout your body. They’re part of your lymphatic system, which is part of your body’s immune system. Lymph nodes are removed during your surgery because they may also contain cancer cells. If you’ve had surgery or radiation therapy to your pelvis in the past, we may remove fewer lymph nodes. This is done to avoid problems after your surgery.

Reconstruction of Your Bladder

After your bladder is removed, your surgeon will remove a small section of your intestine called the ileum. One end of the ileum will be attached to your ureters, and the other end will be attached to a surgically created opening called a stoma (see Figure 2). Your urine will flow through the ileal conduit into an appliance you’ll wear outside your body.

Figure 2. Your ileal conduit

Your surgery will take about 3 to 5 hours, but the time may be different if you have other medical conditions or have had past surgeries.

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Before Your Surgery

The information in this section will help you prepare for your surgery.

Read through this section when your surgery is scheduled and refer to it as your surgery date gets closer. It contains important information about what you need to do before your surgery. Write down any questions you have and be sure to ask your doctor or nurse.

Preparing for Your Surgery

You and your healthcare team will work together to get ready for your surgery.

Help us keep you safe during your surgery by telling us if any of the following statements apply to you, even if you aren’t sure.

  • I take a blood thinner. Some examples are aspirin, heparin, warfarin (Coumadin®), clopidogrel (Plavix®), enoxaparin (Lovenox®), dabigatran (Pradaxa®), apixaban (Eliquis®), and rivaroxaban (Xarelto®). There are others, so be sure your doctor knows all the medications you’re taking.
  • I take prescription medications (medications prescribed by a doctor), including patches and creams.
  • I take over-the-counter medications (medications I buy without a prescription), including patches and creams.
  • I take dietary supplements, such as herbs, vitamins, minerals, and natural or home remedies.
  • I have a pacemaker, automatic implantable cardioverter-defibrillator (AICD), or other heart device.
  • I have sleep apnea.
  • I have had a problem with anesthesia (medication to make you sleep during surgery) in the past.
  • I am allergic to certain medication(s) or materials, including latex.
  • I am not willing to receive a blood transfusion.
  • I drink alcohol.
  • I smoke.
  • I use recreational drugs.

About Drinking Alcohol

The amount of alcohol you drink can affect you during and after your surgery. It’s important to talk with your healthcare providers about how much alcohol you drink. This will help us plan your care.

  • Stopping alcohol suddenly can cause seizures, delirium, and death. If we know you’re at risk for these complications, we can prescribe medication to help prevent them.
  • If you drink alcohol regularly, you may be at risk for other complications during and after your surgery. These include bleeding, infections, heart problems, and a longer hospital stay.

Here are things you can do to prevent problems before your surgery:

  • Be honest with your healthcare provider about how much alcohol you drink.
  • Try to stop drinking alcohol once your surgery is planned. If you develop a headache, nausea, increased anxiety, or can’t sleep after you stop drinking, tell your healthcare provider right away. These are early signs of alcohol withdrawal and can be treated.
  • Tell your healthcare provider if you can’t stop drinking.
  • Ask us any questions you have about drinking and surgery. As always, all of your medical information will be kept confidential.

About Smoking

People who smoke can have breathing problems when they have surgery. Stopping even for a few days before surgery can help. If you smoke, your nurse will refer you to our Tobacco Treatment Program. You can also reach the program at 212-610-0507.

About Sleep Apnea

Sleep apnea is a common breathing disorder that causes a person to stop breathing for short periods of time while sleeping. The most common type is obstructive sleep apnea (OSA). With OSA, the airway becomes completely blocked during sleep. It can cause serious problems during and after surgery.

Please tell us if you have sleep apnea or if you think you might have it. If you use a breathing machine (such as a CPAP) for sleep apnea, bring it with you the day of your surgery.

Within 30 Days of Your Surgery

Presurgical Testing (PST)

Before your surgery, you will have an appointment for presurgical testing (PST). The date, time, and location of your PST appointment will be printed on the appointment reminder from your surgeon’s office.

You can eat and take your usual medications the day of your PST appointment.

During your appointment, you will meet with a nurse practitioner (NP) who works closely with anesthesiology staff (doctors and specialized nurses who will give you anesthesia during your surgery). Your NP will review your medical and surgical history with you. You will have tests, including an electrocardiogram (EKG) to check your heart rhythm, a chest x-ray, blood tests, and any other tests needed to plan your care. Your NP may also recommend you see other healthcare providers.

Your NP will talk with you about which medications you should take the morning of your surgery.

It’s very helpful to bring the following things to your PST appointment:

  • A list of all the medications you’re taking, including prescription and over-the-counter medications, patches, and creams.
  • Results of any tests done outside of MSK, such as a cardiac stress test, echocardiogram, or carotid doppler study.
  • The name(s) and telephone number(s) of your doctor(s).

Complete a Health Care Proxy Form

If you haven’t already completed a Health Care Proxy form, we recommend you complete one now. A health care proxy is a legal document that identifies the person who will speak for you if you’re unable to communicate for yourself. The person you identify is called your health care agent.

If you’re interested in completing a Health Care Proxy form, talk with your nurse. If you have completed one already, or if you have any other advance directive, bring it to your next appointment.

Meet with a Wound, Ostomy, and Continence (WOC) Nurse

A WOC nurse is a nurse who specializes in caring for stomas. Before your surgery, your WOC nurse will mark a site on your stomach where your stoma may be placed. The site will be the best possible location, away from scars, creases, folds, and if possible, in an area that will make it easy for you to care for it.

Even if your surgeon doesn’t think you will need a stoma, they may have your WOC nurse mark a site anyway. This is done in case the surgical plan changes based on findings during your surgery.

Do Breathing and Coughing Exercises

Practice taking deep breaths and coughing before your surgery. You will be given an incentive spirometer to help expand your lungs. For more information, read our resource How to Use Your Incentive Spirometer. If you have any questions, ask your nurse or respiratory therapist.

Consider Our Sexual Health Programs

Bladder surgery will affect your sexual health. If you have any concerns about how it will affect you, consider making an appointment with one of our sexual health clinics.

Information for Males

Bladder surgery can cause erectile dysfunction (having trouble getting or keeping an erection). Sometimes, the nerves that control erectile function can be spared during your surgery. This is called a nerve sparing procedure. Your doctor will talk with you about the possibility of having a nerve sparing procedure.

Your doctor will also talk with you about possible changes in your erectile function after your surgery and what to expect about being able to have erections again. There are many types of treatments for erectile dysfunction, including pills, injections, or a prosthesis. Your doctor can discuss these options with you. To see a specialist in the Male Sexual & Reproductive Medicine Program, call 646-888-6024.

If you want to have children in the future, you may want to bank your sperm before surgery. Ask your nurse for information about sperm banking and for a list of sperm banks in this area if you want to bank your sperm.

Information for Females

If your reproductive organs are removed, you won’t be able to bear children after your surgery. If you want to have children after this surgery, you may want to consider family planning options such as egg freezing before your surgery. Your doctor can discuss these options with you.

You may also experience changes in sexual function after your surgery. These may include a shorter vaginal canal and menopause. Your surgeon will talk with you about these changes and discuss your treatment options in more detail. To see a specialist in the Female Sexual Medicine & Women’s Health Program, call 646-888-5076.

10 Days Before Your Surgery

Stop Taking Vitamin E

If you take vitamin E, stop taking it 10 days before your surgery. Vitamin E can cause bleeding. For more information, read our resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Buy Hibiclens® Skin Cleanser

Hibiclens is a skin cleanser that kills germs for 24 hours after using it (see Figure 3). Showering with Hibiclens before your surgery will help lower your risk of infection after your surgery. You can buy Hibiclens at your local pharmacy without a prescription.

Watch a Virtual Tour

This video will give you an idea of what to expect when you come to Memorial Hospital (MSK’s main hospital) on the day of your surgery.

7 Days Before Surgery

Stop Taking Certain Medications

If you take aspirin, ask your surgeon if you should keep taking it. Aspirin and medications that contain aspirin can cause bleeding. For more information, read our resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Stop Taking Herbal Remedies and Other Supplements

Stop taking herbal remedies and other dietary supplements 7 days before your surgery. If you take a multivitamin, ask your doctor or nurse if you should keep taking it. For more information, read our resource Herbal Remedies and Cancer Treatment.

2 Days Before Your Surgery

Stop Taking Certain Medications

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil®, Motrin®) and naproxen (Aleve®), 2 days before your surgery. These medications can cause bleeding. For more information, read our resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

1 Day Before Your Surgery

Note the Time of Your Surgery

A clerk from the Admitting Office will call you after 2:00 pm the day before your surgery. If you’re scheduled for surgery on a Monday, you will be called on the Friday before. The clerk will tell you what time you should arrive at the hospital for your surgery. If you don’t receive a call by 7:00 pm, please call 212-639-5014.

On the day of your surgery, go to MSK’s Presurgical Center (PSC).

PSC on the 6th floor
1275 York Avenue
(between East 67th and East 68th Streets)
New York, NY 10065
B elevator to 6th floor

Follow a Clear Liquid Diet

You will need to follow a clear liquid diet the day before your surgery. Your doctor or nurse will tell you if you need to start your clear liquid diet earlier or do any additional bowel preparation.

A clear liquid diet includes only liquids you can see through. Examples are listed in the table below. While you’re on this diet:

  • Don’t eat any solid foods.
  • Try to drink at least 1 (8-ounce) glass of clear liquid every hour while you’re awake.
  • Drink plenty of liquids other than water, coffee, and tea. You can drink liquids of any color, as long as they’re clear.
  • Don’t drink sugar-free liquids unless you have diabetes.
For People with Diabetes

If you take insulin or another medication for diabetes, you may need to change the dose. Ask the doctor who prescribes your diabetes medication what you should do the day before and the morning of your surgery. Tell your doctor you will be drinking a sugar-free liquid diet the day before your procedure.

While you’re following a clear liquid diet, drink only sugar-free clear liquids and check your blood sugar level often. If you have any questions, talk with your healthcare provider.

Clear Liquid Diet
  Drink Do Not Drink
Soups
  • Clear broth, bouillon, or consommé
  • Any products with particles of dried food or seasoning
Sweets
  • Gelatin, such as Jell-O®
  • Flavored ices
  • Hard candies, such as Lifesavers®
  • All others
Drinks
  • Clear fruit juices, such as apple, cranberry, lemonade, or grape
  • Soda, such as 7-Up®, Sprite®, ginger ale, or seltzer
  • Gatorade®
  • Black coffee
  • Tea
  • Water
  • Juices with pulp
  • Nectars
  • Milk or cream
  • Alcoholic beverages

Shower with Hibiclens

The night before your surgery, shower using Hibiclens.

  1. Use your normal shampoo to wash your hair. Rinse your head well.
  2. Use your normal soap to wash your face and genital area. Rinse your body well.
  3. Open the Hibiclens bottle. Pour some solution into your hand or a washcloth.
  4. Move away from the shower stream to avoid rinsing off the Hibiclens too soon.
  5. Rub the Hibiclens gently over your body from your neck to your feet. Don’t put the Hibiclens on your face or genital area.
  6. Move back into the shower stream to rinse off the Hibiclens.
  7. Dry yourself off with a clean towel after your shower.
  8. Don’t put on any lotion, cream, deodorant, makeup, powder, cologne, or perfume after your shower.

Sleep

Go to bed early and get a full night’s sleep.

Instructions for eating and drinking before your surgery

12 ounces of water

  • Do not eat anything after midnight the night before your surgery. This includes hard candy and gum.
  • Between midnight and up until 2 hours before your scheduled arrival time, you may drink a total of 12 ounces of water (see figure).
  • Starting 2 hours before your scheduled arrival time, do not eat or drink anything. This includes water.

The Morning of Your Surgery

Take Your Medications

If your doctor or NP instructed you to take certain medications the morning of your surgery, take only those medications with a sip of water. Depending on what medications you take and the surgery you’re having, this may be all, some, or none of your usual morning medications.

Shower with Hibiclens

Shower using Hibiclens just before you leave for the hospital. Use the Hibiclens the same way you did the night before.

Don’t put on any lotion, cream, powder, deodorant, makeup, cologne, or perfume after your shower.

Things to Remember

  • Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne.
  • Remove nail polish and nail wraps.
  • Don’t wear any metal objects. Remove all jewelry, including body piercings. The equipment used during your surgery can cause burns if it touches metal.
  • Leave valuable items, such as credit cards, jewelry, or your checkbook, at home.
  • Before you’re taken into the operating room, you will need to remove your hearing aids, dentures, prosthetic device(s), wig, and religious articles.
  • Wear something comfortable and loose-fitting.
  • If you wear contact lenses, wear your glasses instead. Wearing contact lenses during surgery can damage your eyes.

What to Bring

  • A pair of loose-fitting pants, such as sweat pants.
  • Sneakers that lace up. You may have some swelling in your feet. Lace up sneakers can accommodate this swelling.
  • Your breathing machine for sleep apnea (such as your CPAP), if you have one.
  • Your portable music player, if you choose. However, someone will need to hold it for you when you go into surgery.
  • Your incentive spirometer, if you have one.
  • Your Health Care Proxy form, if you have completed one.
  • Your cell phone and charger.
  • A case for your personal items, such as eyeglasses, hearing aid(s), dentures, prosthetic device(s), wig, and religious articles, if you have one.
  • This guide. Your healthcare team will use this guide to teach you how to care for yourself after your surgery.

Where to Park

MSK's parking garage
MSK’s parking garage is located on East 66th Street between York and First Avenues. If you have questions about prices, call 212-639-2338.

To reach the garage, turn onto East 66th Street from York Avenue. The garage is located about a quarter of a block in from York Avenue, on the right-hand (north) side of the street. There is a pedestrian tunnel that you can walk through that connects the garage to the hospital.

There are also other garages located on East 69th Street between First and Second Avenues, East 67th Street between York and First Avenues, and East 65th Street between First and Second Avenues.

Once You’re in the Hospital

You will be asked to state and spell your name and date of birth many times. This is for your safety. People with the same or similar names may be having surgery on the same day.

Get Dressed for Surgery

When it’s time to change for surgery, you will get a hospital gown, robe, and nonskid socks to wear.

Meet With Your Nurse

You will meet with your nurse before surgery. Tell your nurse the dose of any medications (including patches and creams) you took after midnight and the time you took them.

Your nurse may place an intravenous (IV) line into one of your veins, usually in your arm or hand. If your nurse doesn’t place the IV, your anesthesiologist will do it later once you’re in the operating room.

Marking Your Surgical Site

In addition to being asked your name and birth date, you may also be asked the name of your surgeon, what surgery you’re having, and which side is being operated on. Your surgeon or another member of your surgical team will use a marker to initial the site on your body that will be operated on. This is for your safety. We do this to make sure that all members of the surgical staff are clear about the plan for your surgery.

Meet With Your Anesthesiologist

Your anesthesiologist will:

  • Review your medical history with you.
  • Ask you if you’ve had any problems with anesthesia in the past, including nausea or pain.
  • Talk with you about your comfort and safety during your surgery.
  • Talk with you about the kind of anesthesia you will receive.
  • Answer questions you have about your anesthesia.
Prepare For Your Surgery

Once your nurse has seen you, 1 or 2 visitors can keep you company as you wait for your surgery to begin. When it’s time for your surgery, your visitor(s) will be shown to the waiting area. Your visitors should read our resource Information for Family and Friends for the Day of Surgery.

You will either walk into the operating room or be taken in on a stretcher. A member of the operating room team will help you onto the operating bed. Compression boots will be placed on your lower legs. These gently inflate and deflate to help blood flow in your legs.

Once you’re comfortable, your anesthesiologist will give you anesthesia through your IV line and you will fall asleep. You will also get fluids through your IV line during and after your surgery.

After you’re fully asleep, a breathing tube will be placed through your mouth and into your windpipe to help you breathe.

Once your surgery is finished, your incision will be closed with staples or sutures (stitches). Steri-Strips™ (thin pieces of surgical tape) will be placed directly on your incision and your incision will be covered with a bandage. Your breathing tube is usually taken out while you’re still in the operating room.

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After Your Surgery

The information in this section will tell you what to expect after your surgery, both during your hospital stay and after you leave the hospital. You will learn how to safely recover from your surgery. Write down any questions you have and be sure to ask your doctor or nurse.

What to Expect

When you wake up after your surgery, you will be in the Post-Anesthesia Care Unit (PACU).

You will get oxygen, either through a thin tube that rests below your nose or a mask that covers your nose and mouth. You will also have compression boots on your lower legs. A nurse will be monitoring your body temperature, pulse, blood pressure, and oxygen levels.

You will have several different types of drainage tubes in your body. The types of tubes will depend on the type of urinary diversion that was created for you.

  • Jackson-Pratt® drain: This is a small, egg-shaped container that’s connected to a drainage tube. It exits through an opening in the lower part of your stomach and collects liquid from your pelvis.
  • Stents: These are 2 small, white tubes that are used to drain your kidneys. They may exit through an opening in your stomach or be attached internally to a urinary (Foley®) catheter.

Your visitors can see you briefly in the PACU, usually within 90 minutes after you arrive there. A member of the nursing staff will explain the guidelines to them.

You will probably stay in the PACU overnight. You will be taken to your room the next morning. There, your nurse will tell you what you can do to recover from your surgery.

During Your Hospital Stay

The length of time you’re in the hospital after your surgery is different for every person. Some people leave after 3 to 4 days, while other people stay longer. The length of your hospital stay depends on your recovery. Below are 2 examples of ways you can help yourself recover safely.

  • You will be encouraged to walk with the help of your nurse or physical therapist. We will give you medication to relieve pain. Walking helps reduce the risk for blood clots and pneumonia. It also helps to stimulate your bowels so they begin working again.
  • Use your incentive spirometer. This will help your lungs expand, which prevents pneumonia. When using your incentive spirometer or doing other breathing exercises, it may help to splint your incision. To do this, hold a pillow or blanket against the incision sites. This will reduce movement in your muscles. For more information, read our resource How to Use Your Incentive Spirometer.

Managing Your Pain

You will have some pain after your surgery. You will get oral pain medication (medication you swallow) to manage your pain. If you have an epidural catheter, you will also get pain medication into your epidural space (the space just outside your spinal cord). Your doctor and nurse will ask you about your pain often and give you medication as needed.

You may have a pain medication pump that you can control, called patient controlled analgesia (PCA). For more information, read our resource Patient-Controlled Analgesia (PCA).

If your pain isn’t relieved, tell your doctor or nurse. It’s important to control your pain so you can cough, breathe deeply, use your incentive spirometer, and get out of bed and walk. Controlling your pain will help you recover better.

You will be given a prescription for pain medication before you leave the hospital.

Swelling and Discharge

Right after surgery, you may have some swelling in your genitals and groin area. This is normal and will go away after several weeks.

You may also notice some discharge from your penis or vagina. This is normal. The discharge should go away over several weeks.

Eating

You may be able to start drinking liquids the day after your procedure. Depending on how your bowels are working, you will slowly start eating solid foods again over the next few days.

You may also have a nasogastric (NG) tube for a few days after surgery. This will help keep you from feeling nauseated while your bowels are recovering. The NG tube helps drain liquids from your stomach if your bowel function is slow.

Your appetite may be smaller than it was before your surgery. Eat several small meals throughout the day rather than 3 large meals. Eating this way will help your digestion and give you energy throughout the day.

Eating a balanced diet high in calories and protein is important for healing after surgery. Your diet should include a good protein source at each meal, as well as fruits, vegetables, and whole grains. For more tips on increasing your calorie and protein intake, read our resource Eating Well During and After Your Cancer Treatment. If you have questions about your diet, ask to see a dietitian.

Learning to Care for Yourself

You will be able to shower with help within 2 to 3 days after your surgery.

While you’re in the hospital, your nurse will teach you how to care for your urinary diversion and any drains you’ll have when you leave the hospital. If you have a caregiver who will help you when you go home, it’s helpful for them to be there during teaching. Your nurse will also give you written information for you to review when you’re at home.

You will also get a case manager after your surgery. They will work with you to arrange for a visiting nurse to see you when you leave the hospital.

Getting Your Supplies

Your nurse will give you about a 3 week supply of the equipment you’ll need to care for yourself at home. They will also give you the names of places to order your supplies from. Be sure to read the written ostomy information from your nurse.

Caring for Yourself at Home

A visiting nurse will see you when you’re home from the hospital. They will monitor your recovery and teach you how to care for yourself after surgery.

The nurse that works with your surgeon will call you 1 to 4 days after your surgery to see how you’re doing. They will also tell you when to schedule an appointment with your surgeon for a follow-up care plan for your new appliance.

Managing Your Pain

The length of time each person has pain or discomfort varies. You may still have some pain when you go home and will probably be taking pain medication. Some people have soreness, tightness, or muscle aches around their incision for 6 months or longer. This doesn’t mean that something is wrong.

Follow the guidelines below to help manage your pain at home.

  • Take your medications as directed and as needed.
  • Call your doctor if the medication prescribed for you doesn’t relieve your pain.
  • Don’t drive or drink alcohol while you’re taking prescription pain medication.
  • As your incision heals, you will have less pain and need less pain medication. An over-the-counter pain reliever such as acetaminophen (Tylenol®) or ibuprofen (Advil®) will relieve aches and discomfort.
    • Follow your doctor or nurse’s instructions for stopping your prescription pain medication.
    • Don’t take more acetaminophen than the amount directed on the bottle or as instructed by your doctor or nurse. Taking too much acetaminophen can harm your liver.
  • Pain medication should help you resume your normal activities. Take enough medication to do your exercises comfortably. However, it’s normal for your pain to increase slightly as you increase your level of activity.
  • Keep track of when you take your pain medication. It works best 30 to 45 minutes after you take it.Taking it when your pain first begins is more effective than waiting for the pain to get worse.

Pain medication may cause constipation (having fewer bowel movements than what’s normal for you).

Managing Constipation

Here are some suggestions to help prevent constipation:

  • Go to the bathroom at the same time every day. Your body will get used to going at that time. However, if you feel the urge to go, don’t put it off.
  • Try to use the bathroom 5 to 15 minutes after meals. After breakfast is a good time to move your bowels. The reflexes in your colon are strongest at this time.
  • Drink 8 (8-ounce) glasses (2 liters) of liquids daily, if you can. Drink water, juices, soups, ice cream shakes, and other drinks that don’t have caffeine. Prune juice may also help.
  • If you feel bloated, avoid foods that can cause gas, such as beans, broccoli, onions, cabbage, and cauliflower.
  • Make sure your meals and snacks are well balanced and high in protein.
  • Slowly increase the fiber in your diet to 25 to 35 grams per day. If you have an ostomy or have had recent bowel surgery, check with your doctor or nurse before making any changes in your diet. Foods high in fiber include:
    • Bran
    • Whole-grain cereals and breads
    • Unpeeled fruits and vegetables
    • Mixed green salads
    • Apricots, figs, and raisins
  • Exercise, if you can. Walking is an excellent form of exercise.
  • Take a stool softener such as docusate sodium (Colace®) 3 times a day. Continue taking the stool softener until you are no longer taking pain medications.
  • If you haven’t had a bowel movement in 2 days, take a mild laxative. We recommend 1 packet of polyethylene glycol (MiraLAX®) with a tall glass of warm water. Don’t take a laxative if you have nausea, vomiting, or swelling in your abdomen. If you have these symptoms, call your doctor.

Changes in Bowel Function

When part of your colon is removed, the part that’s left adapts to this change. Your remaining colon will begin to adapt shortly after your surgery. During this time, you may have the following symptoms:

  • Gas
  • Cramps
  • Changes in your bowel habits (such as frequent bowel movements)

If you have soreness around your anus from frequent bowel movements:

  • Soak in warm water 2 to 3 times a day.
  • Apply zinc oxide ointment (such as Desitin®) to the skin around your anus. This helps prevent irritation.
  • Don’t use harsh toilet tissue. You can use a nonalcohol wipe instead, such as a baby wipe.
  • Take medication, if your doctor prescribes it.

These changes may take weeks to months to go away. If the changes are a problem for you, talk with your doctor or nurse.

Eating and Drinking

You can eat all the foods you did before your surgery, unless your doctor gives you other instructions. Eating lots of foods with protein (such as meat, fish, and eggs) and vitamin C (such as fruits) will help your wounds heal.

You can drink alcohol in moderation if:

  • You aren’t taking a narcotic, such as morphine, hydromorphine, or oxycodone.
  • Your doctor says it’s okay.

Drink plenty of liquids without alcohol or caffeine. Try to drink 8 to 10 (8-ounce) glasses of liquids every day. The amount you need to drink may vary based on your body size and the temperature outside. You should drink enough liquids so that the urine in your bag is a very light yellow color or clear. If it becomes dark yellow or orange, that’s a sign that you need to drink more fluids.

Caring for Your Incision

  • You may have some pain at your incision for the first few weeks after your surgery. If you do, take your pain medication as prescribed by your doctor.
  • Before you leave the hospital, your doctor will probably remove your staples and place Steri-Strips over your incision. These strips will loosen and fall off by themselves. If you go home with the staples in, you will need to return several days later to have them removed.
  • Take a shower every day to clean your incision. Use soap, but don’t put it directly on your incision. Don’t rub the area around your incision. Pat the area dry with a clean towel after you shower. Leave your incision uncovered or cover it with a small bandage if your clothing may rub it (such as the waistline of your pants). Don’t take a bath for the first 4 weeks after your surgery.

Sexuality

Sexuality includes many aspects of caring and closeness. It isn’t only having sex. You and your partner can build other forms of sexual and emotional expression. Most important, remember that your surgery doesn’t change your feelings for each other. Sexual counseling to talk about these issues can help. Any member of your healthcare team can refer you to counseling.

After surgery, most males will have erectile dysfunction. There are a number of treatments to help with this. We recommend that male patients make an appointment to see a specialist in the Male Sexual & Reproductive Medicine Program by calling 646-888-6024.

After surgery, females won’t able to bear children if their reproductive organs were removed. There may also be changes to the structure of the vagina. We recommend that female patients make an appointment to see a specialist in the Female Sexual Medicine & Women’s Health Program by calling 646-888-5076.

The American Cancer Society (ACS) offers free booklets on cancer and sexual health called Sex and the Man With Cancer and Sex and the Woman With Cancer. You can get copies by calling 1-800-ACS-2345, or go to www.cancer.org.

You can’t harm your stoma during sex as long as there isn’t constant pressure on it. Don’t put anything into the opening of your stoma.

Resuming Activities

It’s normal to have less energy than usual after your surgery. Recovery time is different for each person. Increase your activities each day as much as you can. Always balance activity periods with rest periods. Rest is a vital part of your recovery.

When you leave the hospital, your incision will appear to be healed on the outside, but it won’t be healed on the inside.

  • Don’t lift anything heavier than 10 pounds (about 4.5 kilograms).
  • Don’t do any strenuous activity for at least 6 weeks after your surgery. For example, don’t jog or play tennis or any contact sports. Ask your doctor about any other exercise.
  • Walk 2 to 3 times a day for 20 to 30 minutes. You can walk outside or indoors at your local mall or shopping center.

Returning to Work

Having a stoma shouldn’t stop you from going back to work. Talk with your doctor or nurse about your job and when it may be safe for you to return. For example, if your job involves heavy lifting, you may need to stay out a little longer than if you sit at a desk.

Driving

Ask your surgeon when you can drive. For most people, it will be at least 6 weeks after surgery. Don’t drink alcohol or drive while you are taking prescription pain medication.

To protect your stoma from your seatbelt, place a small pillow next to it. Your WOC nurse can give you more information. You may ride in a car as a passenger at any time after you leave the hospital.

Traveling

You will be able to travel. Here are some suggestions for when you travel:

  1. Bring extra supplies, just in case it’s hard to get them at your destination.
  2. Carry all your equipment with you instead of checking it in on a plane, train, or bus. This will help you be prepared if you’re separated from your luggage.
  3. Discuss travel options with your WOC nurse. You may want to use a leg bag.

Managing Your Feelings

After surgery for a serious illness, you may have new and upsetting feelings. Many people say they feel weepy, sad, worried, nervous, irritable, and angry at one time or another. You may find that you can’t control some of these feelings. If this happens, it’s a good idea to seek emotional support.

The first step in coping is to talk about how you feel. Family and friends can help. Your nurse, doctor, and social worker can reassure, support, and guide you. It’s always a good idea to let these professionals know how you, your family, and your friends are feeling emotionally. Many resources are available to you and your caregiver(s), including MSK’s on-line and in-person bladder cancer support groups. Information about those groups and other resources such as the Bladder Cancer Advocacy Network (BCAN) is located in the “Resources” section of this guide. Whether you’re in the hospital or at home, the nurses, doctors, and social workers are here to help you and your family and friends handle the emotional aspects of your illness.

  • A temperature of 101° F (38.3° C) or higher
  • Chills
  • Any bleeding
  • Leakage or drainage from your incision
  • Redness at your incision
  • Increased pain
  • Nausea or vomiting
  • Leg swelling or pain
  • Shortness of breath
  • Catheter or drainage tubes that are dislodged or not draining
  • No bowel movement for more than 2 days
  • Decreased urine output
  • Any problems you didn’t expect
  • Any questions or concerns

After 5:00 pm, during the weekend, and on holidays, call 212-639-2000. Ask to speak to the doctor on call for your doctor.

Frequently Asked Questions: Caring for Your Urostomy

What are the most common skin problems related to urostomies?

The most common skin problems happen if:

  • Urine gets under the wafer.
  • You have allergies to your ostomy products.

Tell your WOC nurse if you have any problems with the skin around your stoma.

One common skin problem is a build-up of tissue on the skin around your stoma. The tissue may look greyish, purplish, wart-like, or have white spots. It can cause pain around your stoma. The build-up is caused by constant exposure of the skin to urine.

To resolve this problem, you may need to:

  • Cut or mold your wafer or get a different pre-cut wafer.
  • Use a different type of wafer.
  • Apply a barrier to your wafer (such as the Colly-Seel™ disc or Coloplast barrier ring).

You may also need to treat the skin right around your stoma each time you change your appliance. To do this:

  1. Mix ¼ cup of white vinegar with 1 cup of water.
  2. Soak a gauze pad in the mixture. Place the gauze pad on your skin for 20 minutes.
  3. Rinse your skin with water.
  4. Dry your skin well and apply a new wafer.

Another common skin problem is an allergic reaction with redness, itching, burning, welts, or discomfort. 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 WOC nurse. They will give you suggestions for how to treat it.

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

To prevent an infection:

  • Drink 6 to 8 (8-ounce) glasses of water or other liquids every day.
  • Limit the amount of alcohol and caffeine you drink.
  • Use a pouch with an antireflux valve and a night drainage system. This keeps urine from sitting on your stoma and causing an infection.
  • Empty your pouch when it’s ? to ½ full.

You can also ask your doctor if you can take vitamin C (about 500 to 1,000 mg) and a sugar-free cranberry pill daily. These will increase the acidity of your urine and may help:

  • Prevent urinary tract infections
  • Decrease urine odor (smell)
  • Keep your skin from being damaged

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?

Your stoma has many blood vessels and may bleed easily. It’s normal to see a small amount of blood on the gauze when you’re cleaning the stoma. The bleeding should stop on its own within a few minutes. If you take a blood thinner or aspirin, you may bleed more easily and for a longer time. Apply pressure to you your stoma to help stop the bleeding.

Call your doctor if the bleeding doesn’t stop after 10 to 15 minutes. You may need to go to MSK’s Urgent Care Center or your local emergency room. Your doctor will tell you what to do.

If there’s 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 muscle around your stoma is weak. A loop of bowel (small intestine) can poke through the weak area, causing a bulge to form. If you see a bulge around your stoma, contact your doctor or WOC nurse.

Hernias often don’t have any symptoms. They aren’t treated unless they become blocked, twisted, or cause pain or other problems. Call your doctor right away if you have:

  • Nausea
  • Vomiting
  • Pain in your abdomen
  • Swelling in your abdomen

If you have a hernia, your WOC nurse can suggest a hernia support belt. These belts are custom made to fit your body. 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 your ostomy pouch.

Using a hernia support belt, girdle, or biking shorts won’t cure the hernia, but it may keep the hernia from getting worse. They can also make you feel more comfortable and pull in the bulge to help your clothes fit better.

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

If urine is leaking under your wafer, change the wafer right away. If the leakage doesn’t stop, contact your WOC nurse. You may need a different system that fits better to avoid leakage.

How do I clean my night drainage system?

Wash your night drainage system every day. You can use warm water or a mixture of ¼ cup white vinegar and 1 cup water. You can also buy cleansers such as M9™ Crystallizer cleansing system. After you wash the drainage system, let it air dry.

Replace your night drainage bag every 2 to 4 weeks.

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

You can find out about new products by:

  • Asking your WOC nurse.
  • Calling companies and asking for samples of their latest products.
  • Doing a search on the Internet for ostomy products.

You can also join an online chat room or local support group for people with ostomies. Often, other people dealing with the same issues know of products that might meet your needs.

Can I wear a clothing belt?

Yes, you can wear a belt. You can also wear suspenders. If you choose to wear a belt, wear it above or below your stoma. If the belt is directly on your stoma, it may cause:

  • Irritation
  • Bleeding
  • An overgrowth of tissue

You may want to wear a stoma guard along with the belt. It will help keep the belt from pressing on your stoma. You can order a stoma guard when you order your other supplies.

How do I position the pouch?

You can position the pouch so it points down and can be tucked into your pants or underwear. It can also be folded, if you prefer. You can also try special underwear or concealment bands such as those from www.ostomysecrets.com or www.steathbelt.com.

Is there anything I should do to prepare for medical tests?

Always carry extra ostomy supplies (pouch and wafer) with you. Many pharmacies and medical centers don’t have ostomy supplies, and you may need an extra set.

If you’re having a scan with contrast, bring an extra pouch and wafer, including an extra leg bag or night bag. For the scan, you will need to drink more liquids than usual. This will help the contrast leave your body, but it will also increase your urine output. You may need the extra pouch and wafer 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. You may also want to keep a urinal or other container in your car in case of an emergency.

If you’re having chemotherapy, bring an extra pouch and wafer. Chemotherapy may cause your body to make more urine. It may also make your skin more sensitive or change the way the wafer sticks to your skin. You may need to change your wafer more often during chemotherapy to protect your skin and prevent leakage.

If you’re having a procedure where the doctor or nurse needs to access your stoma, you may need to switch to a different type of pouching system. For example, you may need to switch from a 1-piece system to a 2-piece system. Your doctor or nurse will talk with you before the procedure.

If you have any problems, contact your WOC nurse.

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

That is a personal choice. Just as you didn’t wear gloves when urinating before your ostomy, you don’t need to wear them now. However, you may prefer to wear gloves when you change their pouch because some urine could get on your fingers.

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Resources

This section includes a list of MSK support services, as well as the resources that were referred to throughout this guide. These resources will help you prepare for your surgery and recover safely. Write down any questions you have and be sure to ask your doctor or nurse.

Educational Resources

MSK Support Services

Anesthesia
212-639-6840
Call if you have any questions about anesthesia.

Blood Donor Room
212-639-7643
Call for more information if you’re interested in donating blood or platelets.

Bobst International Center
888-675-7722
MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.

Chaplaincy Service
212-639-5982
At MSK, our chaplains are available to listen, help support family members, pray, contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can request spiritual support, regardless of formal religious affiliation. The interfaith chapel is located near the main lobby of Memorial Hospital and is open 24 hours a day. If you have an emergency, please call the hospital operator and ask for the chaplain on call.

Counseling Center
646-888-0200
Many people find that counseling helps them. We provide counseling for individuals, couples, families, and groups, as well as medications to help if you feel anxious or depressed.

Integrative Medicine Service
646-888-0800
Integrative Medicine Service offers many services to complement (go along with) traditional medical care, including music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy.

Look Good Feel Better Program
www.lookgoodfeelbetter.org
800-395-LOOK (800-395-5665)
This program offers workshops to learn things you can do to help you feel better about your appearance. For more information or to sign up for a workshop, call the number above or visit the program’s website.

Patient-to-Patient Support Program
212-639-5007
You may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through our Patient-to-Patient Support Program, you’re able to speak with former patients and caregivers.

Patient Billing
646-227-3378
Call if you have any questions about preauthorization with your insurance company. This is also called preapproval.

Patient Representative Office
212-639-7202
Call if you have questions about the Health Care Proxy form or if you have concerns about your care.

Perioperative Nurse Liaison
212-639-5935
Call if you have questions about MSK releasing any information while you’re having surgery.

Private Duty Nursing Office
212-639-6892
You may request private nurses or companions. Call for more information.

Resources for Life After Cancer (RLAC) Program
646-888-8106
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
212-639-7020
Social workers help patients, family, 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 help refer you to community agencies and programs, as well as financial resources if you’re eligible.

Tobacco Treatment Program
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call for more information.

Virtual Bladder Support Group
This is a live, online support and education group for people undergoing treatment for bladder cancer. People share their personal experiences and provide practical and emotional support for one another. This group meets the fourth Thursday of each month from 4:00 pm to 5:00 pm. Discussions are led by a social worker and a nurse. For more information, or to register, email virtualprograms@mskcc.org.

For additional online information, visit LIBGUIDES on MSK’s library website at http://library.mskcc.org or the bladder cancer section of www.mskcc.org. You can also contact the library reference staff at 212-639-7439 for help.

External Resources

Access-A-Ride
web.mta.info/nyct/paratran/guide.htm
877-337-2017
In New York City, the MTA offers a shared ride, door-to-door service for people with disabilities who can’t take the public bus or subway.

Air Charity Network
www.aircharitynetwork.org
877-621-7177
Provides travel to treatment centers.

American Cancer Society (ACS)
www.cancer.org
800-ACS-2345 (800-227-2345)
Offers a variety of information and services, including Hope Lodge, a free place for patients and caregivers to stay during cancer treatment.

Bladder Cancer Advocacy Network
www.bcan.org
Proves resources and support services for people affected by bladder cancer.

Cancer and Careers
www.cancerandcareers.org
A resource for education, tools, and events for employees with cancer.

CancerCare
www.cancercare.org
800-813-4673
275 Seventh Avenue (Between West 25th & 26th Streets)
New York, NY 10001
Provides counseling, support groups, educational workshops, publications, and financial assistance.

Cancer Support Community
www.cancersupportcommunity.org
Provides support and education to people affected by cancer.

Caregiver Action Network
www.caregiveraction.org
800-896-3650
Provides education and support for people who care for loved ones with a chronic illness or disability.

Corporate Angel Network
www.corpangelnetwork.org
866-328-1313
Offers free travel to treatment across the country using empty seats on corporate jets.

Gilda’s Club
www.gildasclubnyc.org
212-647-9700
A place where men, women, and children living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

Good Days
www.mygooddays.org
877-968-7233
Offers financial assistance to pay for copayments during treatment. Patients must have medical insurance, meet the income criteria, and be prescribed medication that’s part of the Good Days formulary.

Healthwell Foundation
www.healthwellfoundation.org
800-675-8416
Provides financial assistance to cover copayments, health care premiums, and deductibles for certain medications and therapies.

Joe’s House
www.joeshouse.org
877-563-7468
Provides a list of places to stay near treatment centers for people with cancer and their families.

LGBT Cancer Project
http://lgbtcancer.com/
Provides support and advocacy for the LGBT community, including a online support groups and a database of LGBT-friendly clinical trials.

LIVESTRONG Fertility
www.livestrong.org/we-can-help/fertility-services
855-744-7777
Provides reproductive information and support to cancer patients and survivors whose medical treatments have risks associated with infertility.

National Association for Continence
www.NAFC.org

National Cancer Institute
www.cancer.gov
800-4-CANCER (800-422-6237)

National Cancer Legal Services Network
www.nclsn.org
Free cancer legal advocacy program.

National LGBT Cancer Network
www.cancer-network.org
Provides education, training, and advocacy for LGBT cancer survivors and those at risk.

Needy Meds
www.needymeds.org
Lists Patient Assistance Programs for brand and generic name medications.

NYRx
www.nyrxplan.com
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

Partnership for Prescription Assistance
www.pparx.org
888-477-2669
Helps qualifying patients without prescription drug coverage get free or low-cost medications.

Patient Access Network Foundation
www.panfoundation.org
866-316-7263
Provides assistance with copayments for patients with insurance.

Patient Advocate Foundation
www.patientadvocate.org
800-532-5274
Provides access to care, financial assistance, insurance assistance, job retention assistance, and access to the national underinsured resource directory.

RxHope
www.rxhope.com
877-267-0517
Provides assistance to help people get medications that they have trouble affording.

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