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Total cystectomy is surgery to remove the bladder. It is most often done to treat bladder cancer. After the bladder is removed, a new bladder (neobladder) or a pouch is made to collect urine. This is called a continent urinary diversion. This sheet explains the surgery and what to expect.
During the surgery, the bladder is removed. Nearby lymph nodes and organs that the cancer may spread to are also removed. This includes some or all of your reproductive organs, such as the uterus. Removal of these organs means you can no longer become pregnant. If the ovaries are removed, the level of estrogen in your body will drop, causing your body to go into menopause. Your doctor can tell you more about this and your options.
To collect urine inside your body, you may have a neobladder or a pouch. Your doctor will discuss which option is best for you.
A neobladder allows urine to follow the usual path out of the body. With a neobladder, you’ll no longer have nerves that signal when your bladder is full. You will need to empty the bladder on a set schedule. To do this, you use your pelvic and abdominal muscles to help push the urine out of your body. In some cases, you pass a thin tube (catheter) through the urethra into the new bladder to drain urine.
A pouch connects to the ureters on one end. The other connects to a small, permanent opening (stoma) made in the wall of the abdomen. Most of the time, the stoma is covered with a small bandage. To empty urine from the pouch, you pass a catheter through the stoma into the pouch. This is done on a set schedule. Unlike with some treatments, no bag is needed to collect urine.
Prepare for the surgery as you have been told. In addition:
Tell your doctor about all medications you take. This includes herbs and other supplements. It also includes any blood thinners, such as Coumadin, Plavix, or daily aspirin. You may need to stop taking some or all of them before surgery.
Do not eat or drink during the 8 hours before your surgery. This includes coffee, water, gum, and mints. (If you have been instructed to take medications, take them with a small sip of water.)
If you have been told to, prepare your bowel for surgery (“bowel prep”). This process begins 1-2 days before the surgery. Your doctor may tell you to restrict your diet to clear liquids. You may also be asked to take laxatives or to give yourself an enema. Follow all instructions you are given.
The surgery takes 4-6 hours. Afterward, you will stay in the hospital for 5-7 nights.
Before the surgery begins:
An IV line is put into a vein in your arm or hand. This delivers fluids and medications (such as antibiotics). In some cases, a central or arterial line is inserted into a vein somewhere else on the body. Your doctor can tell you more.
To keep you free of pain during the surgery, you’re given general anesthesia. This medication puts you into a state like deep sleep through the surgery. A tube may be inserted into your throat to help you breathe.
You may have an epidural to help control post-surgery pain. A small tube is inserted into your back to deliver pain medication that numbs the lower body. Talk to your doctor or anesthesiologist about this option.
During the surgery:
An incision is made in the lower abdomen.
The lymph nodes near the bladder are removed. These are checked for cancer cells (a sign that cancer has spread).
The bladder is removed. Nearby reproductive organs are also removed. These include the fallopian tubes, uterus, cervix, and part of the vagina. The ovaries will also likely be removed.
For a neobladder, a piece of the small intestine is removed. It is attached to the ureters on one end and to the urethra on the other end.
For a pouch, the end of the small intestine and first part of the large intestine is removed. A stoma is made in the wall of your lower belly. The piece of intestine is then connected to the ureters on one end and to the stoma on the other.
Thin tubes (stents) may be placed through the abdomen into the ureters to the kidneys. These help drain urine during healing.
If you have a neobladder, a catheter may be placed into it to help drain urine. If you have a pouch, a catheter may be placed through the stoma into the pouch to keep the pathway open. Another catheter may be placed through the abdomen into the pouch to help drain mucus and urine.
Once the surgery is done, the abdominal incision is closed with sutures or staples. A tube (drain) may be placed to drain excess fluid from the surgical area.
After the surgery, you will be taken to a recovery room. Here, you’ll wake up from the anesthesia. You may feel sleepy and nauseated. If a breathing tube was used, your throat may be sore at first. When you are ready, you will be taken to your hospital room. While in the hospital:
You will be given medication to manage pain. Let your providers know if your pain is not controlled.
You’ll first receive IV fluids. In a day or so, you will start on a liquid diet. You will then slowly return to a normal diet.
As soon as you’re able, you will get up and walk.
You’ll be taught coughing and breathing techniques to help keep your lungs clear and prevent pneumonia.
A nurse or doctor will show you how to care for your neobladder or pouch and stoma. You’ll also learn how to care for any drains and tubes that you have. You may be taught to flush your pouch with fluid, to remove mucus.
After your hospital stay, you will be released to an adult family member or friend. Have someone stay with you for the next few days, to help care for you. Recovery time varies for each person. Your doctor will tell you when you can return to your normal routine. Until then, follow the instructions you have been given. Make sure to:
Take all medications as directed.
Care for your incision as instructed. If you go home with a drain or a catheter, take care of these as you were shown.
If you have a stoma, care for it as instructed.
Follow your doctor’s guidelines for showering. Avoid swimming, bathing, using a hot tub, and other activities that cause the incision to be covered with water until the doctor says it’s okay.
Avoid heavy lifting and strenuous activities as directed.
Do not drive until your doctor says it’s okay. Do not drive if you’re taking medications that make you drowsy or sleepy.
Walk a few times daily. As you feel able, slowly increase your pace and distance.
Avoid straining to pass stool. If needed, take stool softeners as directed by your doctor.
Do pelvic floor (Kegel) exercises as instructed.
Chest pain or trouble breathing (call 911)
Fever of 100.4°F or higher
Symptoms of infection at an incision site, such as increased redness or swelling, warmth, worsening pain, or foul-smelling drainage
Pain, redness, swelling, odor, or drainage at the stoma site
Little or no urine output for longer than 4 hours
Burning or pain when passing urine or frequent need to pass urine
Bloody urine with clots
Pain or swelling in the legs
Problems with any drains, stents, or catheters
Nausea or vomiting that doesn’t go away
Pain that cannot be controlled with medications
You will have follow-up visits so your doctor can check how well you’re healing. Sutures, staples, or tubes will be removed. You may be taught how to drain your pouch using a catheter. If you have a neobladder, you may be taught pelvic floor exercises to strengthen the muscles around it. This helps prevent urine leakage. You and your doctor can also discuss any further treatment you may need.
Bleeding (may require a blood transfusion)
Pneumonia or other lung problems
Failure to remove all of the cancer, or cancer comes back
Problems with the neobladder or pouch
Development of stones in the neobladder or pouch
Problems with the stoma
Abnormal levels of vitamins and minerals in the blood, requiring lifelong medication
Scarring and narrowing of the ureters
Start of menopause
Risks of anesthesia (the anesthesiologist will discuss these with you)