A continent urinary diversion is a replacement for your bladder that is made with part of your intestine. This new pouch will store urine. There are two types of urinary diversions that eliminate the need to wear an ostomy appliance:
The ileal neobladder
A continent diversion to the skin
The ileal neobladder allows you to urinate through your urethra as you always have. The other type of diversion is a continent cutaneous diversion. It can be an Indiana pouch, a right colon pouch, or a Studer pouch. You will use a catheter to drain your urine with this type of pouch. Your surgeon will tell you which type of diversion is best for you. However, he or she may not know that with certainty until the time of the surgery. These possibilities will be discussed with you before your operation.
This booklet describes:
A cystectomy, which is an operation to remove your bladder
The new pouch to hold urine
The changes that will be made to your urinary system
Your hospital stay
It ends with a section on frequently asked questions. Please discuss any further questions and concerns with your doctor and nurse.
The cystectomy will change your body and your life. You will need to learn many new skills to care for your continent urinary diversion. With time and patience, your body will heal and your lifestyle will be very much like it was before the surgery. We will do all we can to make your adjustment as smooth as possible. Many professionals, in addition to your doctor and nurse, can help you cope. Ask your doctor or nurse for referrals. Our Integrative Medicine Service also offers a wide range of services. You may want instruction on relaxation techniques, yoga, or massages. Call (212) 639-8629 for a complete listing of their programs. Please use these resources if you need assistance with any aspect of your illness, treatment, or recovery. They are here for you and your loved ones.
The urinary system is made up of organs that make, collect, store, and eliminate urine. (See Figure 1.) The system normally includes two kidneys, which produce urine. A tube called a ureter carries urine from the kidney to the bladder. The bladder is where urine is stored. Urine remains in the bladder until you feel the need to urinate, at which time it is expelled thorough the urethra. In women, the urethra is a very short tube located in front of the vagina. In men, the tube is longer and passes through the prostate gland and the penis.
Your bladder will be taken out through a vertical incision in your abdomen. The incision will begin above your belly button and end at the pelvis. In addition to the bladder, it is necessary to remove some of your other organs. This is done to prevent cancer from spreading to them and to ensure adequate cancer treatment.
Organs to be removed:
Part of the vasa deferentia
Possibly, the urethra
Possibly, part of the vagina
When your bladder is removed, your surgeon will need to create a new pouch to collect urine. For a continent cutaneous diversion, a part of the intestine or your appendix is used to make an opening at the surface of the skin on your lower abdomen or belly button. This opening is called a stoma. You will insert a catheter through the stoma to drain the urine. The catheter is a thin, flexible tube. The ureters are attached to the new pouch. (See Figure 2.)
The other type of urinary diversion is the neobladder. It is also an internal pouch, but it is reattached to the urethra. This allows you to urinate through the urethra. This reservoir is usually made from of a piece of the small intestine. The ureters are sewn to the pouch, which is reattached to the urethra. (See Figure 3.)
Depending on your surgeon's preference or your medical history, you may be admitted to the hospital for your pre-operative testing and the bowel preparation. If not, you will complete the following as an outpatient.
You will have preadmission testing (PAT) within 30 days of the surgery. The testing includes blood tests, urine tests, an EKG, and a chest x-ray. You may need a computed tomography (CT) scan. You may also have other tests that your doctor thinks are necessary. You could be referred to a medical doctor or a heart or lung specialist. These doctors may help your doctor plan your care during and after surgery.
Aspirin, ibuprofen, and vitamin E can cause bleeding problems. Do not take medicine that has them unless your doctor says it is okay. Stop taking them 10 days before surgery. Your nurse will give you a fact card that tells you what drugs you cannot take and what you can use instead.
Your bowel must be thoroughly cleansed because some of it will be used to create your new pouch. Your nurse will give you written instructions and review your bowel preparation with you.
You may meet the wound, ostomy, continence nurse (WOCN). This is a nurse who specializes in stoma care. She or he will mark a possible site on your abdomen for your stoma. The site must be placed in an area that will make it easy for you to care for it. This is best done with you sitting up rather than lying down. Even if you are scheduled for a neobladder, your surgeon may have the WOCN mark a site. This is in case it is not possible to create a neobladder or continent cutaneous diversion. Your surgeon will tell you before your surgery why this may not be possible.
The operation takes about 6 to 8 hours. Your family members should check in at the information desk in the main lobby after you go to the operating room. A nurse will update your family members on your progress during surgery. After the operation you will be taken to the Post-Anesthesia Care Unit (PACU). When possible, the nurse will arrange for your family to briefly visit you there. You will probably stay in the PACU overnight. You will be taken to your room the next morning.
You will be in the hospital for about one week. The main goals during the first days after the operation will be to prevent respiratory and circulatory problems. The first day in your room you will be helped out of bed to sit in a chair. You will then walk with assistance. It is a good idea to bring sneakers or comfortable shoes. You will walk a bit more each day until you can walk without aid. Walking is important for preventing blood clots and for helping your bowel function return. Your nurse will review coughing and deep breathing exercises and show you how to use your incentive spirometer. This will help your lungs to expand and will also help to prevent pneumonia. You should continue to use your incentive spirometer to exercise your lungs even after discharge.
You will be able to shower with assistance within 3 to 4 days after the surgery. Men commonly have some scrotal swelling. This will go away about 2 weeks after the operation. To help the swelling, raise your scrotum on a rolled up towel while in bed and wear jockey shorts (briefs).
You will have a small pump to help manage your pain. It will be connected to your intravenous (IV) line. You will be able to give yourself extra doses of medicine safely, when you need it. Though you will not be without pain, your pain level should be tolerable and you should be comfortable. Your nurse will give you the “Patient Controlled Analgesia” booklet that tells you how to use the pump.
Several different types of tubes are placed during the surgery. Depending on your surgeon's preference, you may have all of these tubes or only some of them. Your doctor and nurse will discuss these with you.
With a Neobladder You May Have:
A suprapubic tube (SP). This is a catheter that exits from the lower abdomen and drains the neobladder.
Foley® catheter. This thin, flexible tube exits from the urethra. It drains the neobladder.
With a Cutaneous Continent Diversion You May Have:
A cecostomy tube. This catheter exits from the lower abdomen. It drains the pouch.
A stoma catheter. This flexible tube exits through the stoma to drain the pouch.
With Either Urinary Diversion You May Have:
Stents. These are two small white tubes to drain the kidneys. They may exit through an opening in the abdomen or be attached internally to your Foley catheter.
A Jackson-Pratt® drain. This is a small egg-shape container connected to a drainage tube. It exits through an opening in the lower abdomen and collects fluid from the pelvis.
Nasogastric Tube (NG tube). This is a tube inserted through your nose into your stomach. It will drain gastric secretions and may remain in place for a few days after the surgery. It will be removed when you begin passing gas. This is a sign that your intestine has regained function.
A Penrose drain. This is a small, soft, flat drainage tube. It exits through an opening in the lower abdomen to drain fluid from the pelvis.
As your nurse cares for your new pouch, he or she will describe what is being done. Once you start feeling better, you will begin to take part in your care. You will learn to do it yourself before you leave the hospital. When you are discharged, you will be given written instructions for catheter care and taught how to irrigate the catheter.
You will be discharged with at least one, if not several of the drainage tubes in your abdomen. This will allow the urine to continuously drain from your new pouch and help the area heal. Because your urinary diversion was created out of a piece of intestine, and the intestine normally produces mucus, you will irrigate the tubes in your new pouch before you go home. This will ensure that the tubes do not become clogged with mucus. Your nurse will teach you how to do this. A visiting nurse will see you at home. With time, you will have less mucus from the pouch.
The hospital nurse will give you enough equipment to last about one month. You will also be given the names of supply sources to order the equipment. A case manager will work with you to arrange for a visiting nurse to see you at home after discharge. The visiting nurse will check to make sure you are healing well and review your self-care at home.
Schedule an appointment with your surgeon for a follow-up care plan for your new pouch. Buy a MedicAlert® bracelet that states the type of surgery you have had in case of an emergency. Ask your nurse for an application. You can also get one at your pharmacy.
You will have the Foley® catheter and suprapubic tube (if you have one) for about 2 weeks after you go home. On your first postoperative visit, you may have a cystogram. A contrast dye will be inserted through the Foley catheter into your new bladder. X-rays will be taken to check that it is working properly. If it is, the catheter will be removed.
If you have a suprapubic tube, you will keep it clamped during the day. When you sleep, your doctor may suggest that you unclamp the tube and attach it to your night drainage bag. Attaching it to the bag saves you from having to wake up in the middle of the night to empty your bladder. Your doctor may have you irrigate your suprapubic tube once a day until it is removed. This will happen about one week after the Foley® catheter is taken out.
After your Foley® catheter is removed, check for any remaining urine from your suprapubic tube to make sure your pouch is emptying. When your suprapubic tube is unclamped, measure the amount of urine that empties from the tube. Keep a record of the amount during the day. The nurse will show you how to do this when you see the doctor.
Begin the Kegel exercises when the Foley® catheter is removed. Your nurse will tell you how to do them and give you a card that describes them. These exercises will help strengthen your pelvic muscles. Stronger pelvic muscles help you regain the ability to control when you urinate. You will have some leakage until your pouch stretches and your pelvic muscles are strengthened. If you do the Kegel exercises as directed, you will begin to see improvement in about two months during the day. Night time control will follow.
Urine leakage is expected after the Foley® catheter is removed. This improves gradually. You will need Depends® or urinary pads for the first few months after surgery. Leakage under stress conditions will take longer to resolve. You should expect some leakage when you cough, sneeze, or strain, and at nighttime. Speak with your doctor or nurse if the leakage does not improve.
Patients say the sensation to urinate is different after the surgery. Patients have described it as:
A feeling of pressure
A sensation of fullness
Mild abdominal cramps
Other patients have none of these signs and simply need to follow their voiding schedule. To completely empty the bladder after surgery, men will need to sit to urinate and bear down slightly with the abdominal muscles.
You will urinate on a schedule. This allows your new bladder to stretch slowly. (See Table 1.) The doctor may tell you to catheterize yourself if your pouch does not empty totally. You will be shown how to do it.
The stoma catheter will be removed during your first office visit after you go home. You may still have the cecostomy tube in place but it will be capped. Your nurse will teach you how to catheterize your pouch via the stoma. Do it every two to three hours for the first week. If the cecostomy tube is still in place, uncap the tube after each catheterization to see if there is any urine left in your pouch. If there is not a lot after each catheterization, the cecostomy tube will be removed the next week. Continue to catheterize your pouch on the schedule in Table 1.
Schedule for Urination
Every 2 to 3 hours
Every 3 to 4 hours (Set an alarm clock to wake you up once in the middle of the night to empty the pouch)
This schedule allows your new pouch to increase its capacity over time. It also reduces the pressure on the pouch.
Never go more than 6 hours without emptying your pouch. You could over stretch it and the body may start to reabsorb the urine, or the pouch could be damaged or ruptured.
If you have leakage between urinating or catheterizing, go back to the last week's schedule. Your new pouch may not be able to hold the increased amount of urine.
You may feel pressure or fullness between the times you are scheduled to empty your pouch. If so, do your catheterization or urinate before the next scheduled time.
Until your pouch increases in size, you may notice some mucus output from your stoma. You may cover it with a panty liner or a Band-Aid® to protect your clothing. Do not wear clothing that rubs your stoma. It may cause irritation.
The surgery will cause changes in sexuality. Men will have erectile dysfunction. There are many types of treatments for erectile dysfunction. You can take medicine by mouth or give yourself a tiny injection. Some men elect to have a prosthesis. Your doctor can discuss these options with you. You can also see a specialist in the Sexual Medicine Program. Women will also experience changes in sexual function. These include a shorter vaginal canal and menopause, if it has not already occurred. Surgeons are beginning to explore the options of reconstructing the vaginal canal if it is necessary to remove all or part of the vagina. Your doctor will discuss this and your treatment options with you in more detail.
Sexuality is not just about intercourse. It includes many aspects of caring and intimacy. You and your partner can develop other ways to express and enjoy your sexuality. Your feelings for each other will not be altered by the surgery. However, you may want sexual counseling to discuss changes that have taken place. Any member of your healthcare team can refer you to our Sexual Medicine Program. You can also learn more in two booklets from the American Cancer Society. One is for men: “Sexuality & Cancer: For the Man Who Has Cancer, and His Partner.” The other is for women: “Sexuality & Cancer: For the Woman Who Has Cancer, and Her Partner.” They are free. To get a copy, call 1(800) ACS-2345.
Women will not be able to bear children after this operation. If you had planned or hoped to have children, talk to your surgeon before your surgery. Men may have the option of banking sperm before surgery. Please ask for the booklet on sperm banking and for a list of sperm banks in this area if you wish to bank your sperm.
You may have some pain at the incision for the first few weeks after the surgery. If this occurs, take your pain medicine as prescribed by your doctor.
Before you leave the hospital, the doctor will probably remove your staples and place butterfly strips over the incision. These strips will loosen and fall off by themselves. Sometimes the doctor decides to leave the staples in. In that case, you will need to return several days later to have them removed.
Shower daily but do not take a bath until four weeks after surgery. Use soap but not directly on the incision. Do not rub around the incision. Pat the area dry with a clean towel after you shower and leave the incision uncovered. You may place a small dressing over the incision at points where clothing may rub it (e.g., your waistline).
Call your doctor or nurse if you have:
Fever of 101° F (38.3° C) or higher
Redness around the incision
These could be signs of an infection at the incision.
Your doctor will prescribe pain medicine for you before you go home. The length of time that you have pain or discomfort will vary depending on your surgery and your tolerance for pain. Take your medicine when pain first begins. It will not be work as well if you allow the pain to increase. It takes about 30 minutes for the pain medicine to take effect. As time goes on, the amount of pain medicine that you need will decrease. Often, a mild pain reliever such as acetaminophen (Tylenol®) will be enough.
Time your pain medicine so that you can do your self-care activities and walk.
Do not drink alcohol or drive while you are taking prescription pain medicine.
Your appetite may not be the same as it was before surgery and you may feel full quicker. Eat several small meals throughout the day, rather than three large meals. Eating this way will aid your digestion and provide a steady level of energy throughout the day.
Make sure your meals and snacks are well-balanced and high in protein.
Constipation can occur because of the surgery and pain medicine. It may take weeks or months for your bowel function to return to normal. Here are some suggestions to help prevent constipation.
Increase the fiber in your diet to soften the stool. Foods high in fiber include:
Whole-grain cereals and breads
Unpeeled fruits and vegetables
Mixed green salads
Apricots, figs, and raisins
Drink at least 2 liters (slightly more 2 two quarts) of liquids a day, preferably juice or water. Prune juice may also help.
If you are taking pain medicine, take a stool softener (such as docusate sodium, Colace®) 3 times a day. Before you are discharged, ask your nurse or doctor about using a laxative. If you have not had a bowel movement in two days, take a mild laxative (milk of magnesia or sennosides, Senokot®). Do not take a laxative if you have nausea, vomiting, or stomach swelling. Call your doctor.
Long term, some people have frequent bowel movements. This is because part of the intestine was removed. If this is an issue for you, please speak to your doctor or nurse. You may need to change your diet or take medicine. If you have any questions about your diet when you are at home, speak with your doctor or call a dietitian at 1-212-639-7071.
Will there be any other changes in my body after surgery?
You may notice swelling of the genitalia, groin, and ankles. This is expected; it will gradually improve over several weeks. You may also notice some discharge from the penis or the vagina. This should also improve over several weeks.
Will I be able to return to work?
Having a urinary diversion should not stop you from returning to work. Tell your doctor or nurse what you do so they can decide when it is safe for you to return. For example, if your job involves heavy lifting, you may need to stay out a little longer than if you sit at a desk.
Will people know I have a continent urinary diversion?
No one will know you have a urinary diversion, unless you choose to tell them. The stoma on a cutaneous continent diversion is small and close to the surface of the abdomen. It will not be obvious under your clothes. As long as your belt line does not lie directly across your stoma, you may continue to wear all of your regular clothes. Women should not wear binding support girdles. You can apply a small dressing or Band-Aid® over the stoma to protect it and remove it each time you catheterize your pouch.
The neobladder is inside the pelvis. You cannot see it. Once your Foley® catheter is removed, you will have some leakage of urine. You may need urinary pads until your control improves. Men may feel more comfortable wearing jockey underwear (briefs) and loose-fitting pants.
Can sexual activity damage my stoma opening?
The only thing that could damage the stoma is constant pressure. Otherwise, sexual activity is fine.
Can I travel?
Yes. Pack extra catheters if you catheterize your continent diversion. Carry all your equipment with you instead of checking it on an airplane or train. There is always the chance of being separated from your luggage. Avoid driving your car for six weeks unless otherwise instructed by your doctor.
What care is necessary for the catheter used to catheterize the cutaneous continent diversion at home?
Wash the catheter with mild soap and warm water. Rinse it thoroughly and set it aside to air dry in a clean area away from heat and direct sunlight. Carry your supplies with you so that you can empty the pouch as needed. A catheter can be used for one month. Discard it sooner if necessary.
What type of follow-up care will I receive after my discharge?
You will be given an appointment to see your doctor about one to two weeks after your discharge. Call your doctor or nurse if you have any questions or concerns before this visit. During the follow-up visit, your doctor will examine your incision and evaluate your overall condition. You will be taught how to care for your pouch and how to manage after catheters or drains are removed.
Is there a support or informational group I might join after my discharge?
Yes, there are support groups. Contact your local hospital to find out about nearby groups. Our Post-Treatment Resource Program hosts a bladder cancer support group. Find out more by calling 1-212-717-3527.