About Your Bladder Surgery With an Ileal Conduit (Urostomy)

This guide will help you get ready for your bladder surgery at MSK. It will also help you know what to expect as you recover.

Use this guide as a source of information in the days leading up to your surgery. Bring it with you on the day of your surgery. You and your care team will use it as you learn more about your recovery.

About your bladder 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.
• Your ureters are tubes that carry urine from your kidneys to your bladder.
• Your bladder stores urine until you feel the need to urinate.
• Your urethra is a tube that carries the urine in your bladder out of your body when you urinate.
  • In women, the urethra is very short. It’s located above the vagina.
  • In men, the tube is longer. It passes through the prostate gland and penis.

Removing your bladder

Surgery to remove your entire bladder is called a radical cystectomy.

During your surgery, your doctor will remove your bladder and some of the lymph nodes near your bladder. Then, they will rebuild your urinary system.

About lymph nodes

Lymph nodes are small, bean-shaped glands 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, your doctor may remove fewer lymph nodes. This is done to avoid problems after your surgery.

Removing other organs near your bladder

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

In men, the following organs may be removed:

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

In women, the following organs may be removed:

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

Creating your ileal conduit

After your bladder is removed, your doctor will create a new passage where urine will leave your body. This is called a urostomy. The type of urostomy you will have is called an ileal conduit.

Your doctor will use a small piece of your intestine called the ileum to create the ileal conduit. One end of the ileum will be attached to your ureters. The other end will be attached to a small opening in your abdomen called a stoma (see Figure 2). Your doctor will create the stoma during your surgery.

After your surgery, your urine will flow from your kidneys, through your ureters and ileal conduit, and out of your stoma. You will wear a urostomy pouching (bag) system (appliance) over your stoma to catch and hold the urine.

This surgery usually takes about 3 to 6 hours. It may take longer if you have other medical conditions or have had past surgeries.

Getting ready for your bladder surgery

This section will help you get ready for your surgery. Read it when your surgery is scheduled. Refer to it as your surgery gets closer. It has important information about what to do to get ready.

As you read this section, write down questions to ask your healthcare provider.

Getting ready for your surgery

You and your care team will work together to get ready for your surgery. Help us keep you safe by telling us if any of these things apply to you, even if you’re not sure.

• I take an anticoagulant (blood thinner), such as:
  These are examples of medicines. There are others.
  
  Be sure your healthcare provider knows all the medicines you’re taking.
  • Aspirin
  • Heparin
  • Warfarin (Jantoven®, Coumadin®)
  • Clopidogrel (Plavix®)
  • Enoxaparin (Lovenox®)
  • Dabigatran (Pradaxa®)
  • Apixaban (Eliquis®)
  • Rivaroxaban (Xarelto®)
• I take an SGLT2 inhibitor, such as:
  • Canagliflozin (Invokana®)
  • Dapagliflozin (Farxiga®)
  • Empagliflozin (Jardiance®)
  • Ertugliflozin (Steglatro®)
• I take prescription medicine(s), including patches and creams. A prescription medicine is one you can only get with a prescription from your healthcare provider.
• I take over-the-counter medicine(s), including patches and creams. An over-the-counter medicine is one you can buy without a prescription.
• I take dietary supplements, such as herbs, vitamins, minerals, or 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 (A-nes-THEE-zhuh) in the past. Anesthesia is medicine to make you sleep during a surgery or procedure.
• I’m allergic to certain medicines or materials, including latex.
• I’m not willing to receive a blood transfusion.
• I drink alcohol.
• I smoke or use an electronic smoking device, such as a vape pen or e-cigarette.
• I use recreational drugs, such as marijuana.

About drinking alcohol

It’s important to talk with your healthcare providers about how much alcohol you drink. This will help us plan your care.

If you drink alcohol regularly, you may be at risk for problems during and after your surgery. These include bleeding, infections, heart problems, and a longer hospital stay.

If you drink alcohol regularly and stop suddenly, it can cause seizures, delirium, and death. If we know you’re at risk for these problems, we can prescribe medicine to help prevent them.

Here are things you can do before your surgery to keep from having problems.

• Be honest with your healthcare providers about how much alcohol you drink.
• Try to stop drinking alcohol once your surgery is planned. Tell your healthcare provider right away if you:
  • Get a headache.
  • Feel nauseous (like you’re going to throw up).
  • Feel more anxious (nervous or worried) than usual.
  • Cannot sleep.

These are early signs of alcohol withdrawal and can be treated.

• Tell your healthcare provider if you cannot stop drinking.
• Ask your healthcare provider questions about drinking and surgery. All your medical information will be kept private, as always.

About smoking

If you smoke, you can have breathing problems when you have surgery. Stopping for even a few days before your surgery can help.

Your healthcare provider will refer you to our Tobacco Treatment Program if you smoke. You can also reach the program by calling 212-610-0507.

About sleep apnea

Sleep apnea is a common breathing problem. If you have sleep apnea, you stop breathing for short lengths of time while you’re asleep. The most common type is obstructive sleep apnea (OSA). With OSA, your airway becomes fully blocked during sleep.

OSA can cause serious problems during and after surgery. Tell us if you have or think you might have sleep apnea. If you use a breathing device, such as a CPAP machine, bring it on the day of your surgery.

Using MyMSK

MyMSK (my.mskcc.org) is your MSK patient portal. You can use it to send and read messages from your care team, view your test results, see your appointment dates and times, and more. You can also invite your caregiver to make their own account so they can see information about your care.

If you do not have a MyMSK account, you can sign up at my.mskcc.org. You can get an enrollment ID by calling 646-227-2593 or your doctor’s office.

Watch How to Enroll in MyMSK: Memorial Sloan Kettering's Patient Portal to learn more. You can also contact the MyMSK Help Desk by emailing [email protected] or calling 800-248-0593.

About Enhanced Recovery After Surgery (ERAS)

ERAS is a program to help you get better faster after your surgery. It’s important to do certain things before and after your surgery as part of the ERAS program.

Before your surgery, make sure you’re ready by:

• Reading this guide. It will help you know what to expect before, during, and after your surgery. If you have questions, write them down. You can ask your healthcare provider at your next visit or call their office.
• Exercising and following a healthy diet. This will help get your body ready for your surgery.

After your surgery, help yourself recover more quickly by:

• Reading your recovery pathway. This is an educational resource your healthcare provider will give you. It has goals for your recovery. It will help you know what to do and expect each day.
• Starting to move around as soon as you can. The sooner you get out of bed and walk, the quicker you can get back to your usual activities.

Within 30 days of your bladder surgery

Presurgical testing (PST)

You’ll have a PST appointment before your surgery. You’ll get a reminder from your surgeon’s office with the appointment date, time, and location.

You can eat and take your usual medicine(s) the day of your PST appointment.

It’s helpful to bring these things to your appointment:

• A list of all the medicines you’re taking, including prescription and over-the-counter medicines, patches, and creams.
• Results of any medical tests done outside of MSK in the past year, if you have them. Examples include results from a cardiac stress test, echocardiogram, or carotid doppler study.
• The names and telephone numbers of your healthcare providers.

You’ll meet with an advance practice provider (APP) during your PST appointment. They work closely with MSK’s anesthesiology (A-nes-THEE-zee-AH-loh-jee) staff. These are doctors with special training in using anesthesia during a surgery or procedure.

Your APP will review your medical and surgical history with you. You may have tests to plan your care, such as:

• An electrocardiogram (EKG) to check your heart rhythm.
• A chest X-ray.
• Blood tests.

Your APP may recommend you see other healthcare providers. They’ll also talk with you about which medicine(s) to take the morning of your surgery.

Identify your caregiver

Your caregiver has an important role in your care. Before your surgery, you and your caregiver will learn about your surgery from your healthcare providers. After your surgery, your caregiver will take you home when you’re discharged. They’ll also help you care for yourself at home.

For caregivers

‌  Caring for a person going through cancer treatment comes with many responsibilities. We offer resources and support to help you manage them. Visit www.msk.org/caregivers or read A Guide for Caregivers to learn more.

Fill out a Health Care Proxy form

If you have not already filled out a Health Care Proxy form, we recommend you do now. If you already filled one out or have any other advance directives, bring them to your next appointment.

A health care proxy is a legal document. It says who will speak for you if you cannot communicate for yourself. This person is called your health care agent.

• To learn about health care proxies and other advance directives, read Advance Care Planning for People With Cancer and Their Loved Ones.
• To learn about being a health care agent, read How to Be a Health Care Agent.

Talk with a member of your care team if you have questions about filling out a Health Care Proxy form.

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 abdomen 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.

Do breathing and coughing exercises

Practice taking deep breaths and coughing before your surgery. Your healthcare provider will give you an incentive spirometer to help expand your lungs. To learn more, read How To Use Your Incentive Spirometer.

Consider our sexual health programs

Bladder surgery will affect your sexual health. If you have any concerns about how it will affect you, talk with a member of your care team. They can refer you to one of our sexual health clinics.

Information for men

Bladder surgery can cause changes in erectile function (your ability to get and keep an erection). Most men have erectile dysfunction (ED) after surgery. ED is when you have trouble getting or keeping an erection.

Your doctor will talk with you about what to expect about having erections again after surgery. There are many types of treatments for ED, including pills, injections (shots), or a prosthesis (implant). Your doctor can discuss these options with you.

Because your prostate will be removed during your surgery, you won’t be able to father children after your surgery. 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 if you want to bank your sperm.

To see a specialist in the Male Sexual & Reproductive Medicine Program, ask a member of your care team for a referral or call 646-888-6024 to learn more.

Information for women

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

You may also have changes in sexual function after your surgery. These may include a shorter vagina and menopause. Menopause is when you no longer have a menstrual period. Your doctor will talk with you about what to expect. They can also discuss your treatment options with you in more detail.

To see a specialist in the Female Sexual Medicine & Women’s Health Program, ask a member of your MSK care team for a referral or call 646-888-5076 to learn more.

Do physical activity

Try to do aerobic exercise every day. Examples of aerobic exercise include walking at least 1 mile (1.6 kilometers), swimming, or biking. If it’s cold outside, use stairs in your home or go to a mall or shopping market. Exercising will help your body get into its best condition for your surgery and make your recovery faster and easier. To learn more, read General Exercise Program: Level 2.

Follow a healthy diet

Follow a well-balanced, healthy diet before your surgery. If you need help with your diet, talk with your healthcare provider about meeting with a clinical dietitian nutritionist.

Buy a 4% chlorhexidine gluconate (CHG) solution antiseptic skin cleanser, such as Hibiclens®

4% CHG solution is a skin cleanser that kills germs for 24 hours after you use it. Showering with it before your surgery will help lower your risk of infection after surgery. You can buy a 4% CHG solution antiseptic skin cleanser at your local pharmacy without a prescription.

Buy liquids

You’ll need to follow a full liquid diet before your surgery. It’s helpful to buy liquids ahead of time. Read the “Follow a full liquid diet” section below for a list of liquids you can drink.

7 days before your bladder surgery

Follow your healthcare provider’s instructions for taking aspirin

Aspirin can cause bleeding. If you take aspirin or a medicine that has aspirin, you may need to change your dose or stop taking it 7 days before your surgery. Follow your healthcare provider’s instructions. Do not stop taking aspirin unless they tell you to.

To learn more, read How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil. 

Stop taking vitamin E, multivitamins, herbal remedies, and other dietary supplements

Vitamin E, multivitamins, herbal remedies, and other dietary supplements can cause bleeding. Stop taking them 7 days before your surgery. If your healthcare provider gives you other instructions, follow those instead.

To learn more, read Herbal Remedies and Cancer Treatment.

2 days before your bladder surgery

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs)

NSAIDs, such as ibuprofen (Advil^® and Motrin^®) and naproxen (Aleve^®), can cause bleeding. Stop taking them 2 days before your surgery. If your healthcare provider gives you other instructions, follow those instead.

To learn more, read How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil.

1 day before your bladder surgery

Follow a full liquid diet

You’ll need to follow a full liquid diet the day before your surgery. Examples of liquids you can drink are listed in the “Full liquid diet” table. Your healthcare provider will tell you if you need to start your liquid diet earlier or do any other bowel preparation.

While you’re following a full liquid diet:

• Do not eat any solid foods.
• Try to drink at least 1 (8-ounce) cup of liquid every hour you’re awake.
• Drink different types of liquids. Do not just drink water, coffee, and tea. You can drink liquids of any color.
• Do not drink sugar-free liquids unless you have diabetes and a member of your care team tells you to.

How to follow a full liquid diet if you have diabetes

Ask the healthcare provider who manages your diabetes:

• What to do while you’re following a full liquid diet.
• If you need to change your dose of insulin or other diabetes medicine(s), if you take them.
• If you should drink sugar-free liquids.

Check your blood sugar level often while you’re following a full liquid diet. If you have questions, talk with your healthcare provider.

Note the time of your surgery

A staff member will call you after 2 p.m. the day before your surgery. If your surgery is scheduled for a Monday, they’ll call you the Friday before. If you do not get a call by 7 p.m., call 212-639-5014.

The staff member will tell you what time to get to the hospital for your surgery. They’ll also remind you where to go.

This will be:

The Presurgical Center (PSC) at Memorial Hospital
1275 York Ave. (between East 67^th and East 68^th streets)
New York, NY 10065
Take the B elevator to 6^th floor.

Shower with a 4% CHG solution antiseptic skin cleanser, such as Hibiclens

Shower with a 4% CHG solution antiseptic skin cleanser before you go to bed the night before your surgery.

Do not put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne after your shower.

Instructions for eating and drinking: 8 hours before your arrival time

Stop eating 8 hours before your arrival time, if you have not already.  Your healthcare provider may tell you to stop eating earlier. If they do, follow their instructions. 8 hours before your arrival time, do not eat or drink anything except these clear liquids: Water. Soda. Clear juices, such as lemonade, apple, and cranberry juices. Do not drink orange juice or juices with pulp. Black coffee or tea (without any type of milk or creamer). Sports drinks, such as Gatorade®. Gelatin, such as Jell-O®. You can keep having these until 2 hours before your arrival time.

The day of your bladder surgery

Remember, starting 8 hours before your arrival time, do not eat or drink anything except the things listed above.

Instructions for drinking: 2 hours before your arrival time

Stop drinking 2 hours before your arrival time. This includes water.

Take your medicines as instructed

A member of your care team will tell you which medicines to take the morning of your surgery. Take only those medicines with a sip of water. Depending on what you usually take, this may be all, some, or none of your usual morning medicines.

Shower with a 4% CHG solution antiseptic skin cleanser, such as Hibiclens

Shower with a 4% CHG solution antiseptic skin cleanser before you leave for the hospital. Use it the same way you did the night before.

Do not put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne after your shower.

Things to remember

• Wear something comfortable and loose-fitting.
• If you wear contact lenses, wear your glasses instead. Wearing contact lenses during surgery can damage your eyes.
• Do not wear any metal objects. Take off all jewelry, including body piercings. The tools used during your surgery can cause burns if they touch metal.
• Remove nail polish and wraps.
• Leave valuable items at home.
• If you’re menstruating (have your monthly period), use a sanitary pad, not a tampon. We’ll give you disposable underwear and a pad if you need them.

What to bring

• A pair of loose-fitting pants (such as sweatpants).
• Sneakers that lace up. You may have some swelling in your feet. Lace-up sneakers can fit over this swelling.
• Your breathing device for sleep apnea (such as your CPAP machine), if you have one.
• Your incentive spirometer, if you have one.
• Your Health Care Proxy form and other advance directives, if you filled them out.
• Your cell phone and charger.
• Only the money you may want for small purchases, such as a newspaper.
• A case for your personal items, if you have any. Eyeglasses, hearing aids, dentures, prosthetic devices, wigs, and religious articles are examples of personal items.
• This guide. You’ll use it to learn how to care for yourself after surgery.

Where to park

MSK’s parking garage is on East 66^th Street between York and 1^st avenues. If you have questions about prices, call 212-639-2338.

To get to the garage, turn onto East 66^th Street from York Avenue. The garage is about a quarter of a block in from York Avenue. It’s on the right (north) side of the street. There’s a tunnel you can walk through that connects the garage to the hospital.

There are other parking garages on:

• East 69th Street between 1st and 2nd avenues.
• East 67th Street between York and 1st avenues.
• East 65th Street between 1st and 2nd avenues.

Once you’re in the hospital

When you get to the hospital, take the B elevator to the 6^th floor. Check in at the desk in the PSC waiting room.

Many staff members will ask you to say and spell your name and birth date. This is for your safety. People with the same or a similar name may be having surgery on the same day.

We’ll give you a hospital gown, robe, and nonskid socks to wear when it’s time to change for surgery.

For caregivers, family, and friends

‌  Read Information for Family and Friends for the Day of Surgery to help you know what to expect on the day of your loved one’s surgery.

Meet with a nurse

You’ll meet with a nurse before surgery. Tell them the dose of any medicines you took after midnight (12 a.m.) and the time you took them. Make sure to include prescription and over-the-counter medicines, patches, and creams.

Your nurse may place an intravenous (IV) line in one of your veins, usually in your arm or hand. If your nurse does not place the IV, your anesthesiologist (A-nes-THEE-zee-AH-loh-jist) will do it 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 doctor, what surgery you’re having, and which side is being operated on. Your doctor 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 an anesthesiologist

You’ll also meet with an anesthesiologist before surgery. They will:

• Review your medical history with you.
• Ask if you’ve had any problems with anesthesia in the past. This includes nausea (feeling like you’re going to throw up) or pain.
• Talk with you about your comfort and safety during your surgery.
• Talk with you about the kind of anesthesia you’ll get.
• Answer questions you have about anesthesia.

Your doctor or anesthesiologist may also talk with you about placing an epidural catheter (thin, flexible tube) in your spine (back). An epidural catheter is another way to give you pain medicine after your surgery.

Get ready for surgery

When it’s time for your surgery, you’ll take off your eyeglasses, hearing aids, dentures, prosthetic devices, wig, and religious articles.

You’ll either walk into the operating room or a staff member will bring you there on a stretcher. A member of the operating room team will help you onto the operating bed. They’ll put compression boots 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’ll fall asleep. You’ll also get fluids through your IV line during and after your surgery.

During your surgery

After you’re fully asleep, your care team will place a breathing tube through your mouth into your airway. It will help you breathe.

Your surgeon will close your incisions with staples or stitches once they finish your surgery. They may also place Steri-Strips^™ (thin pieces of surgical tape) or Dermabond^® (surgical glue) over your incisions. They’ll cover your incisions with a bandage.

Your care team will usually take out your breathing tube while you’re still in the operating room.

Recovering after your bladder surgery

This section will help you know what to expect after your surgery. You’ll learn how to safely recover from your surgery both in the hospital and at home.

As you read this section, write down questions to ask your healthcare provider.

In the Post-Anesthesia Care Unit (PACU)

You’ll be in the PACU when you wake up after your surgery. A nurse will be keeping track of your temperature, pulse, blood pressure, and oxygen levels. You may get oxygen through a tube resting below your nose or a mask over your nose and mouth. You’ll also have compression boots on your lower legs.

Pain medicine

You’ll get epidural or IV pain medicine while you’re in the PACU.

• If you’re getting epidural pain medicine, it will be put into your epidural space through your epidural catheter. Your epidural space is the space in your spine just outside your spinal cord.
• If you’re getting IV pain medicine, it will be put into your bloodstream through your IV line.

You’ll be able to control your pain medicine using a button called a patient-controlled analgesia (PCA) device. Read Patient-Controlled Analgesia (PCA) to learn more.

Tubes and drains

You will have several different types of drainage tubes in your body. Your healthcare provider will talk with you about what to expect. You will have 1 or more of the tubes and drains below.

• Jackson-Pratt (JP) drain: This is a small, egg-shaped container that’s connected to a tube in the lower part of your abdomen. It drains liquid from your pelvis.
• Stents: These are 2 small tubes that come out of your stoma. They drain urine from your kidneys.
• Drainage catheter in your stoma: This is a tube that comes out of your stoma. It drains urine from your ileal conduit.

Moving to your hospital room

You will probably stay in the PACU overnight. How long you stay depends on the type of surgery you had. A staff member will bring you to your hospital room after your stay in the PACU.

In your hospital room

The length of time you’re in the hospital after your surgery depends on your recovery. Most people stay in the hospital for 3 to 4 days.

In your hospital room, you’ll meet one of the nurses who will care for you during your stay. A nurse will help you out of bed and into your chair soon after you get there.

Your care team will teach you how to care for yourself while you’re healing from your surgery. You can help yourself recover more quickly by:

• Reading your recovery pathway. We will give you a pathway with goals for your recovery if you do not already have one. It will help you know what to do and expect on each day during your recovery.
• Starting to move around as soon as you can. The sooner you get out of bed and walk, the quicker you can get back to your usual activities.

Managing your pain

You’ll have some pain after your surgery. At first, you’ll get your pain medicine through your epidural catheter or IV line. You’ll be able to control your pain medicine using a PCA device. Once you can eat, you’ll get oral pain medicine (pain medicine you swallow).

We will ask you about your pain often and give you medicine as needed. Tell one of your healthcare providers if your pain is not relieved. It’s important to control your pain so you can use your incentive spirometer and move around. Controlling your pain can help you recover faster.

If you had a robotic surgery, you may have pain in your shoulder. This is called referred pain and is common. It’s caused by the gas that was put into your abdomen during your surgery. If you have pain in your shoulder, tell one of your healthcare providers. They’ll bring you a hot pack to put on your shoulder to help with the pain.

You’ll get a prescription for pain medicine before you leave the hospital. Talk with your healthcare provider about possible side effects. Ask them when to start switching to over-the-counter pain medicine.

Moving around and walking

Moving around and walking will help lower your risk for blood clots and pneumonia (lung infection). It will also help you start passing gas and having bowel movements (pooping) again. Your nurse, physical therapist, or occupational therapist will help you move around, if needed.

To learn more about how walking can help you recover, read Frequently Asked Questions About Walking After Your Surgery.

To learn what you can do to stay safe and keep from falling while you’re in the hospital, read Call! Don't Fall!.

Try to follow the moving and walking goals below. These goals are also in your recovery pathway.

Exercising your lungs

It’s important to exercise your lungs so they expand fully. This helps prevent pneumonia.

• Use your incentive spirometer 10 times every hour you’re awake. Read How To Use Your Incentive Spirometer to learn more.
• Do coughing and deep breathing exercises. A member of your care team will teach you how.

Eating and drinking

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.

While you’re recovering, your appetite may be smaller than it was before your surgery. Eat several small meals throughout the day instead of 3 large meals. Eating this way will help your digestion and give you energy throughout the day.

If you have questions about your diet, ask to see a clinical dietitian nutritionist.

Swelling and discharge

Right after surgery, you may have some swelling in your genitals and groin. You may also have some discharge from your penis or vagina. This is normal. The swelling and discharge should go away over a few weeks.

Learning to care for your ileal conduit

While you’re in the hospital, your nurse will teach you how to care for your ileal conduit. They will also teach you how to care for any tubes or drains you will have at home. If your nurse gives you any written information, you can put it in this folder to review when you’re at home.

It’s very helpful if your caregiver also learns how to care for your ileal conduit. This will make it easier for them to help you at home.

Planning for discharge

You will have a case manager who will help you with your discharge planning (plan for leaving the hospital). They will work with you to arrange for a home care nurse to visit you after you’re discharged from the hospital.

Before you leave the hospital, your nurse will give you enough supplies to care for yourself at home for about 3 weeks. They will also give you a list of companies you can contact to order more supplies. The nurse who works with your doctor will also help you order more supplies after you’re discharged.

Leaving the hospital

Before you leave, look at your incision with one of your healthcare providers. Knowing what it looks like will help you notice any changes later.

On the day of your discharge, plan to leave the hospital around 11 a.m. Your healthcare provider will write your discharge order and prescriptions before you leave. You’ll also get written discharge instructions. One of your healthcare providers will review them with you before you leave.

If your ride isn’t at the hospital when you’re ready to leave, you may be able to wait in the Patient Transition Lounge. A member of your care team will give you more information.

At home

Read What You Can Do to Avoid Falling to learn what you can do to keep from falling at home and during your appointments at MSK.

A home care nurse will visit you when you’re home from the hospital. They will keep track of how you’re recovering. They will also help you practice caring for your ileal conduit.  Read About Your Urostomy to learn more.

The nurse that works with your doctor will call you 1 to 4 days after you’re discharged to see how you’re doing. They will also tell you when to schedule your first appointment after surgery.

Managing your pain

People have pain or discomfort for different lengths of time. You may still have some pain when you go home and will probably be taking pain medicine. Some people have soreness, tightness, or muscle aches around their incision for 6 months or longer. This doesn’t mean something is wrong.

Follow these guidelines to help manage your pain at home.

• Take your medicines as directed and as needed.
• Call your healthcare provider if the medicine prescribed for you does not help your pain.
• Do not drive or drink alcohol while you’re taking prescription pain medicine. Some prescription pain medicines can make you drowsy (very sleepy). Alcohol can make the drowsiness worse.
• You’ll have less pain and need less pain medicine as your incision heals. An over-the-counter pain reliever will help with aches and discomfort. Acetaminophen (Tylenol®) and ibuprofen (Advil or Motrin) are examples of over-the-counter pain relievers.
  • Follow your healthcare provider’s instructions for stopping your prescription pain medicine.
  • Do not take too much of any medicine. Follow the instructions on the label or from your healthcare provider.
  • Read the labels on all the medicines you’re taking. This is very important if you’re taking acetaminophen. Acetaminophen is an ingredient in many over-the-counter and prescription medicines. Taking too much can harm your liver. Do not take more than one medicine that has acetaminophen without talking with a member of your care team.
• Pain medicine should help you get back to your usual activities. Take enough to do your activities and exercises comfortably. You may have a little more pain as you start to be more active.
• Keep track of when you take your pain medicine. It works best 30 to 45 minutes after you take it. Taking it when you first have pain is better than waiting for the pain to get worse.

Some prescription pain medicines, such as opioids, may cause constipation. Constipation is when you poop less often than usual, have a harder time pooping, or both.

Preventing and managing constipation

Talk with your healthcare provider about how to prevent and manage constipation. You can also follow these guidelines.

• Go to the bathroom at the same time every day. Your body will get used to going at that time. But if you feel like you need 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 go. That’s when the reflexes in your colon are strongest.
• Exercise, if you can. Walking is a great type of exercise that can help prevent and manage constipation.
• Drink 8 to 10 (8-ounce) cups (2 liters) of liquids daily, if you can. Choose water, juices (such as prune juice), soups, and milkshakes. Limit liquids with caffeine, such as coffee and soda. Caffeine can pull fluid out of your body.
• Slowly increase the fiber in your diet to 25 to 35 grams per day. Unpeeled fruits and vegetables, whole grains, and cereals contain fiber. If you have an ostomy or recently had bowel surgery, ask your healthcare provider before changing your diet.
• Both over-the-counter and prescription medicines can treat constipation. Ask your healthcare provider before taking any medicine for constipation. This is very important if you have an ostomy or have had bowel surgery. Follow the instructions on the label or from your healthcare provider. Examples of over-the-counter medicines for constipation are:
  • Docusate sodium (Colace®). This is a stool softener (medicine that makes your bowel movements softer) that causes few side effects. You can use it to help prevent constipation. Do not take it with mineral oil.
  • Polyethylene glycol (MiraLAX®). This is a laxative (medicine that causes bowel movements) that causes few side effects. Take it with 8 ounces (1 cup) of a liquid. Only take it if you’re already constipated.
  • Senna (Senokot®). This is a stimulant laxative, which can cause cramping. It’s best to take it at bedtime. Only take it if you’re already constipated.
  If any of these medicines cause diarrhea (loose, watery bowel movements), stop taking them. You can start again if you need to.

To learn more, read Constipation. Call your healthcare provider if you’re not passing gas or if you haven’t had a bowel movement in 3 days.

Diarrhea and other changes in bowel function

When part of your colon is removed, the part that’s left adapts to the change. Your colon will start to adapt soon after your surgery. During this time, you may have gas, cramps, or changes in your bowel habits (such as diarrhea or frequent bowel movements). These changes may take weeks to months to go away.

If you’re having problems with changes in your bowel function, talk with your doctor or nurse. You can also try the tips below.

Tips for managing gas

If you have gas or feel bloated, avoid foods that can cause gas. Examples include beans, broccoli, onions, cabbage, and cauliflower.

Tips for managing diarrhea

If you have diarrhea, it’s important to drink at least 8 to 10 (8-ounce) cups of liquids every day. Drink water and drinks with salt, such as broth and Gatorade^®. This will help you keep from becoming dehydrated and feeling weak.

Following the BRATY diet can also help control diarrhea. The BRATY diet is made up mostly of:

• Bananas (B)
• Rice (R)
• Applesauce (A)
• Toast (T)
• Yogurt (Y)

If you’re having diarrhea more than 4 to 5 times a day, or if it smells worse than normal, call your doctor’s office.

Tips for managing soreness

If you have soreness around your anus:

• 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 (such as a baby wipe) instead.
• Take medicine, if your doctor prescribes it.

Caring for your incision

Take a shower every day to clean your incision. Follow the instructions in the “Showering” section below.

It’s common for the skin below your incision to feel numb. This happens because some of your nerves were cut during your surgery. The numbness will go away over time.

Call your healthcare provider’s office if:

• The skin around your incision is very red or getting more red.
• The skin around your incision is warmer than usual.
• The area around your incision is starting to swell or getting more swollen.
• You see drainage that looks like pus (thick and milky).
• Your incision smells bad.

If you go home with staples in your incision, your healthcare provider will take them out during your first appointment after surgery. It’s OK to get them wet.

If you have Steri-Strips or Dermabond on your incision, they’ll loosen and fall or peel off on their own. If they haven’t fallen off after 10 days, you can take them off.

Showering

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Take a shower every day to clean your incision. If you have staples or stitches in your incision, it’s OK to get them wet.

Take your bandage(s) off before you shower. Use soap during your shower, but do not put it directly on your incision. Do not rub the area around your incision.

After you shower, pat the area dry with a clean towel. If your clothing may rub your incision, cover it with a small bandage. Otherwise, leave it uncovered.

Do not take a bath for the first 4 weeks after your surgery.

Eating and drinking

You can eat all the foods you did before your surgery, unless your healthcare provider gives you other instructions. Eating a balanced diet with lots of calories and protein will help you heal after surgery. Try to eat a good protein source (such as meat, fish, or eggs) at each meal. You should also try to eat fruits, vegetables, and whole grains. To learn more, read Eating Well During Your Cancer Treatment.

It’s also important to drink plenty of liquids. Choose liquids without alcohol or caffeine. Try to drink 8 to 10 (8-ounce) cups of liquids every day. You should drink enough so that the urine in your pouch is very light yellow or clear. If it becomes dark yellow or orange, you need to drink more.

If you have questions about your diet, ask to see a clinical dietitian nutritionist.

Physical activity and exercise

Your incision may look like it’s healed on the outside when you leave the hospital. It will not be healed on the inside.

• Do not lift anything heavier than 10 pounds (4.5 kilograms) for the first 6 to 8 weeks after your surgery.
• Do not do any high-energy activities (such as jogging and tennis) for the first 3 months after your surgery.
• Do not play any contact sports (such as football) for the first 3 months after your surgery.

Doing physical activity, such as walking and stair climbing, will help you gain strength and feel better. Try to get 20 to 30 minutes of physical activity at least 2 to 3 times a day. For example, you can walk outside or indoors at your local mall or shopping center. To learn more, read General Exercise Program: Level 2.

It’s common to have less energy than usual after surgery. Recovery time is different for everyone. Do more activity each day as much as you can. Always balance activity periods with rest periods. Rest is an important part of your recovery.

Driving

Ask your healthcare provider when you can drive. Most people can start driving again 6 weeks after surgery. Do not drive while you’re taking pain medicine that may make you drowsy.

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

Going back to work

Talk with your healthcare provider about your job. They’ll tell you when it may be safe for you to start working again based on what you do. If you move around a lot or lift heavy objects, you may need to stay out a little longer. If you sit at a desk, you may be able to go back sooner.

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. To see a counselor at one of our sexual health clinics, ask a member of your care team for a referral.

The American Cancer Society (ACS) offers free booklets on cancer and sexual health called Sex and the Adult Male With Cancer and Sex and the Adult Female With Cancer. You can get copies by visiting the ACS website at www.cancer.org or by calling 800-ACS-2345 (800-227-2345).

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.

Managing your feelings

You may have new and upsetting feelings after a surgery for a serious illness. Many people say they felt weepy, sad, worried, nervous, irritable, or angry at one time or another. You may find that you cannot control some of these feelings. If this happens, it’s a good idea to seek emotional support. Your healthcare provider can refer you to MSK’s Counseling Center. You can also reach them by calling 646-888-0200.

The first step in coping is to talk about how you feel. Family and friends can help. We can also reassure, support, and guide you. It’s always a good idea to let us know how you, your family, and your friends are feeling emotionally. Many resources are available to you and your family. We’re here to help you and your family and friends handle the emotional aspects of your illness. We can help no matter if you’re in the hospital or at home.

Many people join MSK’s online bladder cancer support group. To learn more about our support group, read the “Support services” section of this guide. To learn more about other resources, such as the Bladder Cancer Advocacy Network (BCAN), read the “External support services” section of this guide.

When to call your healthcare provider

Call your healthcare provider if:

• You have a fever of 101 °F (38.3 °C) or higher.
• You have chills.
• You have any bleeding. This includes bleeding at your incision site, bright red blood in your urine, or large blood clots in your urine.
• You have shortness of breath.
• The skin around your incision is very red or getting more red.
• The skin around your incision is warmer than usual.
• The area around your incision is starting to swell or getting more swollen.
• You have new drainage or more drainage than usual from your incision.
• You see drainage from your incision that looks like pus (thick and milky).
• Your catheter or drainage tubes are not draining.
• Your catheter or drainage tubes become dislodged or fall out.
• Your incision smells bad.
• You have increased pain.
• You have swelling or pain in your legs.
• You feel nauseous (like you’re going to throw up) or you’re vomiting (throwing up).
• You’re not passing gas or haven’t had a bowel movement in 3 days.
• You have lower urine output (when the amount you pee is less than usual).
• You have any problems you didn’t expect.
• You have any questions or concerns.

Contact information

Monday through Friday from 9 a.m. to 5 p.m., call your healthcare provider’s office.

After 5 p.m., during the weekend, and on holidays, call 212-639-2000. Ask to speak to the person on call for your healthcare provider.

Support services

This section has a list of support services. They may help you as you get ready for your surgery and recover after your surgery.

As you read this section, write down questions to ask your healthcare provider.

Bladder cancer support group

This is a live, online support and education group for people who have bladder cancer or who have been treated for bladder cancer. People share their personal experiences and provide practical and emotional support for one another. Discussions are led by an MSK social worker, nurse, and WOC nurse.

This group meets the 2^nd Thursday of each month from noon (12 p.m.) to 1 p.m. For more information or to register, contact your MSK social worker. You can also send a message to your care team through MSK’s patient portal, MyMSK. They can connect you with an MSK social worker. A member of your care team will review your message and respond within 2 business days (Monday through Friday).

MSK support services

Admitting Office
212-639-7606
Call if you have questions about your hospital admission, such as asking for a private room.

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

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

Bobst International Center
332-699-7968
We welcome patients from around the world and offer many services to help. If you’re an international patient, call for help arranging your care.

Counseling Center
www.msk.org/counseling
646-888-0200
Many people find that counseling helps them. Our Counseling Center offers counseling for individuals, couples, families, and groups. We can also prescribe medicine to help if you feel anxious or depressed. Ask a member of your care team for a referral or call the number above to make an appointment.

Food Pantry Program
646-888-8055
We give food to people in need during their cancer treatment. Talk with a member of your care team or call the number above to learn more.

Integrative Medicine Service
www.msk.org/integrativemedicine
Our Integrative Medicine Service offers many services to complement (go along with) traditional medical care. For example, we offer music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy. Call 646-449-1010 to make an appointment for these services.

You can also schedule a consultation with a healthcare provider in the Integrative Medicine Service. They’ll work with you to make a plan for creating a healthy lifestyle and managing side effects. Call 646-608-8550 to make an appointment for a consultation.

MSK Library
library.mskcc.org
212-639-7439
You can visit our library website or call to talk with the library reference staff. They can help you find more information about a type of cancer. You can also visit the library’s Patient and Health Care Consumer Education Guide.

Nutrition Services
www.msk.org/nutrition
212-639-7312
Our Nutrition Service offers nutritional counseling with one of our clinical dietitian nutritionists. Your clinical dietitian nutritionist will talk with you about your eating habits. They can also give advice on what to eat during and after treatment. Ask a member of your care team for a referral or call the number above to make an appointment.

Patient and Community Education
www.msk.org/pe
Visit our patient and community education website to search for educational resources, videos, and online programs.

Patient Billing
646-227-3378
Call if you have 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 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 Nurses and Companions
917-862-6373
You can request private nurses or companions to care for you in the hospital and at home. Call to learn more.

Rehabilitation Services 
www.msk.org/rehabilitation 
Cancers and cancer treatments can make your body feel weak, stiff, or tight. Some can cause lymphedema (swelling). Our physiatrists (rehabilitation medicine doctors), occupational therapists (OTs), and physical therapists (PTs) can help you get back to your usual activities.

• Rehabilitation medicine doctors diagnose and treat problems that affect how you move and do activities. They can design and help coordinate your rehabilitation therapy program, either at MSK or somewhere closer to home. Call Rehabilitation Medicine (Physiatry) at 646-888-1929 to learn more.
• An OT can help if you’re having trouble doing usual daily activities. For example, they can recommend tools to help make daily tasks easier. A PT can teach you exercises to help build strength and flexibility. Call Rehabilitation Therapy at 646-888-1900 to learn more.

Resources for Life After Cancer (RLAC) Program
646-888-8106
At MSK, care does not end after your treatment. The RLAC Program is for patients and their families who have finished treatment.

This program has many services. We offer seminars, workshops, support groups, and counseling on life after treatment. We can also help with insurance and employment issues.

Sexual Health Programs
Cancer and cancer treatments can affect your sexual health, fertility, or both. MSK’s sexual health programs can help you before, during, or after your treatment.

• Our Female Sexual Medicine and Women’s Health Program can help with sexual health problems such as premature menopause or fertility issues. Ask a member of your MSK care team for a referral or call 646-888-5076 to learn more.
• Our Male Sexual and Reproductive Medicine Program can help with sexual health problems such as erectile dysfunction (ED). Ask a member of your care team for a referral or call 646-888-6024 to learn more.

Social Work
www.msk.org/socialwork
212-639-7020
Social workers help patients, families, and friends deal with common issues for people who have cancer. They provide individual counseling and support groups throughout your treatment. They can help you communicate with children and other family members.

Our social workers can also help refer you to community agencies and programs. If you’re having trouble paying your bills, they also have information about financial resources. Call the number above to learn more.

Spiritual Care
212-639-5982
Our chaplains (spiritual counselors) are available to listen, help support family members, and pray. They can contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can ask for spiritual support. You do not have to have a religious affiliation (connection to a religion).

MSK’s interfaith chapel is located near Memorial Hospital’s main lobby. It’s open 24 hours a day. If you have an emergency, call 212-639-2000. Ask for the chaplain on call.

Tobacco Treatment Program
www.msk.org/tobacco
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call to learn more.

Virtual Programs
www.msk.org/vp
We offer online education and support for patients and caregivers. These are live sessions where you can talk or just listen. You can learn about your diagnosis, what to expect during treatment, and how to prepare for your cancer care.

Sessions are private, free, and led by experts. Visit our website to learn more about Virtual Programs or to register.

External support services

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.

Cancer and Careers
www.cancerandcareers.org
646-929-8032
A resource for education, tools, and events for employees with cancer.

CancerCare
www.cancercare.org
800-813-4673
275 Seventh Avenue (Between West 25^th & 26^th 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.

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 medicine 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 medicines 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
www.lgbtcancer.com
Provides support and advocacy for the LGBT community, including 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.

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.

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

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 medicines.

NYRx
www.health.ny.gov/health_care/medicaid/program/pharmacy.htm
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

Patient Access Network (PAN) Foundation
www.panfoundation.org
866-316-7263
Gives help 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.

Professional Prescription Advice
www.pparx.org
888-477-2669
Helps qualifying patients without prescription drug coverage get free or low-cost medicines.

Red Door Community (formerly known as Gilda’s Club)
www.reddoorcommunity.org
212-647-9700
A place where people living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

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

Triage Cancer
www.triagecancer.org
Provides legal, medical, and financial information and resources for cancer patients and their caregivers.

Bladder cancer support services

Bladder Cancer Advocacy Network
www.bcan.org
This website has bladder cancer education and resources, such as fact sheets, podcasts, and webinars. It also has bladder cancer support services, such as a toll-free support line and a list of support groups by state.

National Association for Continence
www.nafc.org
This website has information and resources for people with continence problems, such as Kegel exercises you can do, and incontinence supplies you can buy. It also has a directory that can refer you to doctors in your area who can treat your continence problems.

Wound, Ostomy, and Continence Nurses Society
www.wocn.org/learning-center/patient-resources
Visit this website to find a WOC nurse in your area. Please note that many WOC nurses can only see you if there’s an outpatient clinic at their hospital or if you have a doctor at their hospital.

The website also has information on resources and support groups for people with wounds, ostomies, and continence problems.

Educational resources

This section lists the educational resources mentioned in this guide. They will help you get ready for your surgery and recover after your surgery.

As you read these resources, write down questions to ask your healthcare provider.

• A Guide for Caregivers
• About Your Urostomy
• Advance Care Planning for People With Cancer and Their Loved Ones
• Call! Don't Fall!
• Constipation
• Eating Well During Your Cancer Treatment
• Frequently Asked Questions About Walking After Your Surgery
• General Exercise Program: Level 2
• Herbal Remedies and Cancer Treatment
• How to Be a Health Care Agent
• How To Check if a Medicine or Supplement Has Aspirin, Other NSAIDs, Vitamin E, or Fish Oil
• How to Enroll in MyMSK: Memorial Sloan Kettering's Patient Portal
• How To Use Your Incentive Spirometer
• Information for Family and Friends for the Day of Surgery
• Patient-Controlled Analgesia (PCA)
• What You Can Do to Avoid Falling