This guide will help you prepare for your bladder surgery with a neobladder 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.
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.
- 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.
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 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, 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:
- Seminal vesicles
- Part of the vasa deferentia
In women, the following organs may be removed:
- Fallopian tubes
- Part of the vagina
After your bladder is removed, your doctor will create a new pouch to hold your urine. This is called a urinary diversion. The type you will have is called a neobladder.
Before your surgery, you and your doctor will talk about which type of urinary diversion may be best for you. However, your doctor will make the final decision during your surgery. Your doctor will talk with you about how they make this decision and why a backup plan is needed.
Your doctor will use a small piece of your small intestine to create your neobladder. One end of your neobladder will be attached to your ureters. The other end will be attached to your urethra. After your surgery, your urine will flow from your kidneys, through your ureters, and into your neobladder.
You will use the muscles in your abdomen to empty your neobladder. This is different from how you empty your natural bladder. Sometimes, you may need to put a catheter through your urethra into your neobladder to completely empty it. You will learn how to do these things after your surgery.
This surgery usually takes about 4 to 7 hours. It may take longer if you have other medical conditions or have had past surgeries.Back to top
Before Your Surgery
The information in this section will help you get ready 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.
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.
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.
About Enhanced Recovery After Surgery (ERAS)
ERAS is a program to help you get better faster after your surgery. As part of the ERAS program, it’s important to do certain things before and after your surgery.
Before your surgery, make sure you’re ready by doing the following things:
- Read 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 doctor or nurse at your next appointment, or you can call your doctor’s office.
- Exercise and eat a healthy diet. This will help get your body ready for your surgery.
After your surgery, help yourself recover more quickly by doing the following things:
- Read your recovery pathway. Your nurse will give you a pathway with goals for your recovery. It will help you know what to do and expect on each day during your recovery.
- Start eating and moving around as soon as you can. The sooner you’re able to eat, get out of bed, and walk, the quicker you will be able to get back to your normal activities.
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 doctor’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).
Identify Your Caregiver
Your caregiver plays an important role in your care.
- You and your caregiver will learn about your surgery from your doctor and nurse.
- Your caregiver should be with you when you learn how to care for yourself after surgery. This will make it easier for them to help you at home. They should try to be in the hospital with you between 11:00 am and 4:00 pm every day.
- Your caregiver will need to take you home after your surgery.
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, If Needed
A WOC nurse is a nurse who specializes in caring for wounds, stomas, and other skin issues. They can also help you if you’re having problems with incontinence (not being able to control when you urinate).
Before your surgery, your WOC nurse can talk with you about what to expect when you have a neobladder. They may also mark a site on your abdomen where a 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 doctor 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 the 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, think about making an appointment with 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.
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.
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. For more information about exercising, read the resource General Exercise Program: Level 2.
Eat a Healthy Diet
Eat a well-balanced, healthy diet before your surgery. If you need help with your diet, talk with your doctor or nurse about meeting with a dietitian.
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 the 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). 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.
You will need to follow a liquid diet before your surgery. Now is a good time to buy your supplies. For a list of liquids you can drink, read the section “Follow a Liquid Diet.”
Do Pelvic Floor Muscle (Kegel) Exercises
Kegel exercises will strengthen your pelvic floor muscles, which will be weakened from your surgery. Your pelvic floor muscles are the muscles you use to stop the stream of urine while you’re urinating. You will use your pelvic floor muscles when you empty your neobladder.
Practice doing Kegel exercises before your surgery so you’ll know how it should feel. Your nurse will give you information about how to do Kegel exercises.
Do not do Kegel exercises while you have a Foley® catheter in place.
Stop Taking Certain Medications
If you take aspirin, ask your doctor if you should keep taking it. Aspirin and medications that contain aspirin can cause bleeding. For more information, read the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).
Stop Taking Herbal Remedies and Other Dietary 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 the resource Herbal Remedies and Cancer Treatment.
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.
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 the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).
For People With Diabetes
If you have diabetes, ask the doctor who manages your diabetes what you should do while you’re following a liquid diet.
- If you take insulin or another medication for diabetes, ask if you need to change the dose.
- Ask if you should drink sugar-free liquids.
While you’re following a liquid diet, make sure to check your blood sugar level often. If you have any questions, talk with your healthcare provider.
Follow a Liquid Diet
You will need to follow a liquid diet the day before your surgery. Examples of liquids you can drink are listed in the “Liquid Diet” table. Your doctor or nurse will tell you if you need to start your liquid diet earlier or do any other bowel preparation.
While you’re on this diet:
- Don’t eat any solid foods.
- Try to drink at least 1 (8-ounce) glass of liquid every hour while you’re awake.
- Drink plenty of liquids other than water, coffee, and tea. You can drink liquids of any color.
- Don’t drink sugar-free liquids unless you have diabetes.
|Drink||Do Not Drink|
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. If you don’t receive a call by 7:00 pm, please call 212-639-5014.
The clerk will tell you what time to arrive at the hospital for your surgery. They will also tell you where to go. This will be the following location:
Presurgical Center (PSC) on the 6th floor
1275 York Avenue (between East 67th and East 68th Streets)
New York, NY 10065
B elevator to 6th floor
Shower With Hibiclens
The night before your surgery, shower using Hibiclens.
- Use your normal shampoo to wash your hair. Rinse your head well.
- Use your normal soap to wash your face and genital area. Rinse your body well.
- Open the Hibiclens bottle. Pour some solution into your hand or a washcloth.
- Move away from the shower stream to avoid rinsing off the Hibiclens too soon.
- Rub the Hibiclens gently over your body from your neck to your feet. Don’t put the Hibiclens on your face or genital area.
- Move back into the shower stream to rinse off the Hibiclens.
- Dry yourself off with a clean towel after your shower.
- Don’t put on any lotion, cream, deodorant, makeup, powder, cologne, or perfume after your shower.
Go to bed early and get a full night’s sleep.
Do not eat or drink after midnight.
Two hours before your scheduled arrival time, drink the ClearFast PreOp® drink your doctor or nurse gave you. After you finish the ClearFast, do not eat or drink anything else. This includes water, hard candy, and gum.
Take Your Medications
If your doctor or NP told 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
- Wear something comfortable and loose-fitting.
- If you wear contact lenses, wear your glasses instead. Wearing contact lenses during surgery can damage your eyes.
- 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.
- Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne.
- Remove nail polish and nail wraps.
- Leave valuable items (such as credit cards, jewelry, and 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.
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 fit over 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 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 a similar name 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 them 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 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 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.
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 pain medication.
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 the 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.
During 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, sutures (stitches), or Dermabond® (surgical glue). You will also a bandage over your incision. Your breathing tube is usually taken out while you’re still in the operating room.Back to top
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.
When you wake up after your surgery, you will be in the Post-Anesthesia Care Unit (PACU).
A nurse will be monitoring your body temperature, pulse, blood pressure, and oxygen levels. You may be getting oxygen 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.
Tubes and Drains
You will have several different types of drainage tubes in your body. Your doctor or nurse 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. They may be in a small opening in your abdomen, or they may be attached to a Foley catheter inside your body. They drain urine from your kidneys.
- Suprapubic (SP) tube: This is a tube in the lower part of your abdomen. It drains urine from your neobladder.
- Foley catheter: This is a tube in your urethra. It drains urine from your neobladder.
If you have an epidural catheter, you will get pain medication into your epidural space (the space in your spine just outside your spinal cord). You will be able to control your pain medication using a button called a patient-controlled analgesia (PCA) device. For more information, read the resource Patient-Controlled Analgesia (PCA).
If you don’t have an epidural catheter, you will get pain medication through your IV line.
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.
Moving to Your Hospital Room
You will probably stay in the PACU overnight. After your stay in the PACU, you will be taken to your hospital room.
The length of time you’re in the hospital after your surgery depends on your recovery. Some people leave after 3 to 4 days, while other people stay longer. Your nurse will teach you how to recover after your surgery.
Read the resource Call! Don't Fall! to learn about what you can do to stay safe and keep from falling while you’re in the hospital.
Moving Around and Walking
Moving around and walking will help lower your risk for blood clots and pneumonia. It will also help stimulate your bowels so they start working again. Your nurse, physical therapist, occupational therapist will help you move around. They will also give you medication to relieve pain.
Try to follow the moving and walking goals below. These goals are also in your recovery pathway.
|Moving and Walking Goals|
|The day of surgery||
|1 day after surgery||
|2 days after surgery||
|3 days after surgery||
|4 days after surgery||
Managing Your Pain
You will have some pain after your surgery.
- If you have an epidural catheter, you will get pain medication into your epidural space. You will be able to control your medication using a PCA device.
- If you don’t have an epidural catheter, you will get pain medication in your IV line.
- Once you’re able to eat normal food, you will get oral pain medication (medication you swallow).
Your doctor and nurse will ask you about your pain often and give you medication as needed. If your pain isn’t relieved, tell your doctor or nurse. It’s important to control your pain so you can use your incentive spirometer and move around. Controlling your pain will help you recover better.
If you had a robotic surgery, you may have pain in your shoulder. This is called referred pain. It’s caused by the gas that was put into your abdomen during your surgery, and it’s normal. If you have pain in your shoulder, tell your nurse. They will bring you a hot pack to put on your shoulder to help with the pain.
You will be given a prescription for pain medication before you leave the hospital. Talk with your doctor or nurse about possible side effects and when you should start switching to over-the-counter pain medications.
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. For more information, read the resource How to Use Your Incentive Spirometer.
- Do coughing and deep breathing exercises. A member of your care team will teach you how to do these exercises.
When using your incentive spirometer or doing other breathing exercises, it may help to hold a pillow or blanket against your incision. This will keep your muscles from moving as much.
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.
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.
You will be able to shower with help 3 days after your surgery.
Learning to Care for Your Neobladder
It’s very helpful if your caregiver also learns how to care for your neobladder. This will make it easier for them to help you at home.
Your caregiver should try to be in the hospital with you between 11:00 am and 4:00 pm every day.
While you’re in the hospital, your nurse will teach you how to care for your neobladder. 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.
You will also have a case manager after your surgery. They will work with you to arrange for a home care nurse to visit you after you’re discharged from the hospital.
Getting Your Supplies
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.
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 neobladder.
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.
Read the resource What You Can Do to Avoid Falling to learn about what you can do to stay safe and keep from falling at home and during your appointments at MSK.
You should always wear a MedicAlert bracelet or necklace that states that you had a cystectomy with orthotopic neobladder. This will help emergency services workers care for you if you’re ever seriously ill or hurt and need medical help.
You can buy a MedicAlert bracelet or necklace at most drug stores, or you can ask your nurse for an application. For more information, visit the MedicAlert website at www.medicalert.org.
Caring for Your Drainage Tube(s)
You will leave the hospital with 1 or more drainage tubes. The tube(s) will drain urine from your neobladder and help the area heal.
Your neobladder is made out of a piece of your intestine, and your intestine makes mucus. You will need to irrigate the tube(s) in your neobladder before and after you leave the hospital to make sure they don’t get clogged with mucus. Your nurse will teach you how to do this, and a home care nurse will help you after you’re discharged. You will need to irrigate your tube(s) until they’re removed.
After the tube(s) are removed, you’ll see mucus in your urine. This is normal. With time, your neobladder will make less mucus.
Managing Urinary Leakage (Incontinence)
You will probably have urinary leakage after your Foley catheter is removed. You will need to use urinary pads or briefs (such as Depends®) for the first few months after surgery.
The leakage will get better over time as your pelvic muscles get stronger. Leakage at night and under stress conditions (such as when you cough, sneeze, or strain) will take longer to stop.
Strengthening Your Pelvic Muscles
Start doing pelvic muscle (Kegel) exercises when your Foley catheter is removed. Kegel exercises will help strengthen your pelvic muscles, which will help you control when you urinate. Your nurse will tell you how to do them and give you written instructions.
If you do the Kegel exercises as directed, you will start to have better urinary control during the day in about 2 months. Nighttime control will follow. Talk with your doctor or nurse if the leakage doesn’t get better and is bothering you.
Emptying Your Neobladder
Some people don’t feel any sensation when they need to empty their neobladder. If you do feel a sensation, it will be different than what you felt when you needed to urinate before your surgery. You may feel:
- A sensation of fullness
- Mild cramps in your abdomen
To empty your neobladder:
- Sit on the toilet.
- Relax your pelvic floor muscles.
- Bear down slightly using your abdominal muscles.
This is similar to what you do to have a bowel movement. It’s important to sit while you urinate, even if you’re male, because it will help you relax your pelvic floor muscles.
Your doctor will check to see how well your neobladder is emptying. If it isn’t emptying completely, you may need to catheterize yourself (put a catheter through your urethra into your neobladder) to empty it. Your nurse will show you how to do this.
You will need to urinate on a schedule. This will help you keep from overfilling your neobladder. Below is an example of a schedule to empty your neobladder. Your doctor may tell you to follow a different schedule. Follow your doctor’s instructions.
|Week 1||Every 2 to 3 hours||Every 3 to 4 hours|
|Week 2||Every 3 to 4 hours||Every 4 to 5 hours|
|Week 3||Every 4 to 5 hours||Every 4 to 5 hours|
|Week 4||Every 4 to 5 hours||Every 6 hours|
|Week 5 and after||Every 4 to 6 hours||Every 6 hours|
- At nighttime, set an alarm clock to wake you up once in the middle of the night to empty your neobladder.
- Never go more than 6 hours without emptying your neobladder. Waiting longer than 6 hours can cause your neobladder to become over-stretched. This can damage or burst your neobladder or cause your body to start reabsorbing urine.
- If you have leakage between the times you empty your bladder, go back to the last week’s schedule. Your neobladder may not be able to hold the increased amount of urine.
- If you feel pressure or fullness between the times you’re scheduled to empty your neobladder, urinate before the next scheduled time.
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).
Talk with your nurse about how to manage constipation. You can also follow the guidelines below.
- 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.
- Exercise, if you can. Walking is an excellent form of exercise.
- Drink 8 (8-ounce) glasses (2 liters) of liquids daily, if you can. Drink water, juices (such as prune juice), soups, ice cream shakes, and other drinks that don’t have caffeine. Drinks with caffeine, such as coffee and soda, pull fluid out of your body.
- 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:
- Whole-grain cereals and breads
- Unpeeled fruits and vegetables
- Mixed green salads
- Apricots, figs, and raisins
- Both over-the-counter and prescription medications are available to treat constipation. Try one of the following over-the-counter medications first. Follow the instructions on the label or from your healthcare provider.
- Docusate sodium (Colace®): This is a stool softener that causes few side effects. Don’t take it with mineral oil.
- Polyethylene glycol (MiraLAX®): This is a laxative that causes few side effects. Take it with 8 ounces (1 cup) of a liquid.
- Senna (Senokot®): This is a stimulant laxative, which can cause cramping. It’s best to take it at bedtime.
- If you haven’t had a bowel movement in 2 days, call your doctor or nurse.
For more information, read the resource Constipation.
Call your doctor or nurse 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) glasses 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 medication, 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 normal for the skin below your incision to feel numb, because some of the nerves were cut. The numbness will go away over time.
Call your doctor’s office if:
- The skin around your incision is very red.
- The skin around your incision is getting more red.
- You see drainage that looks like pus (thick and milky).
If you go home with staples in your incision, they will be removed during your first appointment after surgery. It’s okay to get the staples wet.
Take a shower every day to clean your incision. If you have staples in your incision, it’s okay to get them wet.
Use soap, but don’t put it directly on your incision. Don’t rub the area around your incision. After you shower, pat the area dry with a clean towel. 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.
Eating and Drinking
You can eat all the foods you did before your surgery, unless your doctor 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.
For more tips on eating more calories and protein, read the resource Eating Well During and After Your Cancer Treatment.
It’s important to drink plenty of liquids. Choose liquids without alcohol or caffeine. Try to drink 8 to 10 (8-ounce) glasses 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 dietitian.
Activities and Exercise
When you leave the hospital, your incision will look like it’s 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) for at least 6 to 8 weeks after your surgery.
- Don’t do any demanding activities (such as jogging, tennis, or contact sports) for at least 3 months after your surgery.
Doing aerobic exercise, such as walking and stair climbing, will help you gain strength and feel better. Walk at least 2 to 3 times a day for 20 to 30 minutes. You can walk outside or indoors at your local mall or shopping center. For more information, read the resource General Exercise Program: Level 2.
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 an important part of your recovery.
Ask your doctor when you can drive. Most people can start driving again within 6 weeks after surgery. Don’t drive while you’re taking pain medication that may make you drowsy. You can ride in a car as a passenger at any time after you leave the hospital.
Going Back to Work
Having a neobladder 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 start working again. If your job involves movement or heavy lifting, you may need to stay out a little longer than if you sit at a desk.
You will be able to travel. Here are some suggestions for when you travel:
- Bring extra supplies, just in case it’s hard to get them at your destination.
- If you’re taking a plane, train, or bus, carry your supplies with you. Don’t put them in your checked luggage. This will help you be prepared if you’re separated from your luggage.
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.
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 800-ACS-2345 (800-227-2345) or visiting the ACS website, www.cancer.org.
MSK’s Male Sexual & Reproductive Medicine Program
After surgery, men will have erectile dysfunction (ED). There are treatments to help with this. We recommend that men see a specialist in the Male Sexual & Reproductive Medicine Program. You can make an appointment by calling 646-888-6024.
MSK’s Female Sexual Medicine & Women’s Health Program
After surgery, women won’t able to bear children if their reproductive organs were taken out. Some women may also have changes in the structure of their vagina. We recommend that women see a specialist in the Female Sexual Medicine & Women’s Health Program. You can make an appointment by calling 646-888-5076.
Managing Your Feelings
After surgery for a serious illness, you may have new and upsetting feelings. Many people say they felt 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 patients and their families. 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.
Many people join one of MSK’s online or in-person bladder cancer support groups. For information about those groups and other resources, such as the Bladder Cancer Advocacy Network (BCAN), read the “Resources” section of this guide.Back to top
Call Your Doctor or Nurse if You Have:
- A temperature of 101° F (38.3° C) or higher
- Any bleeding
- New leakage or drainage from your incision
- More leakage or drainage from your incision
- Pus-like 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 movements for more than 3 days
- No gas at all
- 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.Back to top
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.
Bladder Cancer Support Groups
Bladder Cancer Support Group
646-422-4628 or 646-888-8106
This is a live, in-person 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 a social worker, nurse, and WOC nurse.
This group meets the 2nd Thursday of each month from 12:00 to 1:30 pm. For more information, or to register, call the numbers above or email RLAC@mskcc.org.
Online Bladder Cancer 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. Discussions are led by a social worker and a WOC nurse.
This group meets the 4th Thursday of each month from 4:00 to 5:00 pm. For more information, or to register, email email@example.com.
MSK Support Services
Call if you have any questions about anesthesia.
Blood Donor Room
Call for more information if you’re interested in donating blood or platelets.
Bobst International Center
MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.
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 Memorial Hospital’s main lobby and is open 24 hours a day. If you have an emergency, please call the hospital operator and ask for the chaplain on call.
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.
Female Sexual Medicine & Women’s Health Program
This program helps female patients who are dealing with cancer-related sexual health challenges, including premature menopause and fertility issues. Call for more information or to make an appointment.
Integrative Medicine Service
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
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 at www.lookgoodfeelbetter.org.
Male Sexual & Reproductive Medicine Program
This program helps male patients who are dealing with cancer-related sexual health challenges, including erectile dysfunction. Call for more information or to make an appointment.
Patient and Caregiver Support Program
You may find it comforting to speak with a cancer survivor or caregiver who has been through a similar treatment. Through our Patient and Caregiver Support Program, you’re able to speak with former patients and caregivers.
Call if you have any questions about preauthorization with your insurance company. This is also called preapproval.
Patient Representative Office
Call if you have questions about the Health Care Proxy form or if you have concerns about your care.
Perioperative Nurse Liaison
Call if you have questions about MSK releasing any information while you’re having surgery.
Private Duty Nursing Office
You may request private nurses or companions. Call for more information.
Resources for Life After Cancer (RLAC) Program
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 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
If you want to quit smoking, MSK has specialists who can help. Call for more information.
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.
Bladder Cancer Advocacy Network
National Association for Continence
United Ostomy Associations of America
Wound Ostomy Continence Organization
Go to this website to find a WOC nurse in your area. The website also has information on:
- All major suppliers of ostomy products
- Support groups
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.
American Cancer Society (ACS)
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
A resource for education, tools, and events for employees with cancer.
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
Provides support and education to people affected by cancer.
A place where men, women, and children living with cancer find social and emotional support through networking, workshops, lectures, and social activities.
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.
LGBT Cancer Project
Provides support and advocacy for the LGBT community, including online support groups and a database of LGBT-friendly clinical trials.
Provides reproductive information and support to cancer patients and survivors whose medical treatments have risks associated with infertility.
National Cancer Legal Services Network
Free cancer legal advocacy program.
National LGBT Cancer Network
Provides education, training, and advocacy for LGBT cancer survivors and those at risk.
Lists Patient Assistance Programs for brand and generic name medications.
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.
Patient Advocate Foundation
Provides access to care, financial assistance, insurance assistance, job retention assistance, and access to the national underinsured resource directory.
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