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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, the surgeon must make a new way to drain urine from your body. This is called urinary diversion. With incontinent urinary diversion, urine drains through a hole in your abdomen into a bag. This sheet explains the surgery and what to expect.
Total cystectomy and urinary diversion result in permanent changes to your body:
During the surgery, the bladder is removed. Nearby lymph nodes and organs that the cancer may spread to are also removed. These include 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.
After the surgery, urine no longer leaves the body through your urethra. Instead, it drains through a hole made in your lower belly called a stoma. Urine then passes through the stoma and drains into a bag worn outside the body, under your clothes. You’ll need to wear a bag all of the time. And you’ll need to empty and change the bag regularly. You’ll also need to take care of your stoma and the skin around it. You’ll be taught how to do this while you’re in the hospital.
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’ll 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. If possible, nerves that affect sexual function are spared.
A piece of your large or small intestine is removed. This is used to make a conduit for the urine to flow from the ureters out of the body. If a piece of small intestine is used, this is called an ileal conduit. If a piece of large intestine is used, this is called a colon conduit. With either type, one end is connected to the ureters. The other end is brought through an incision in the abdominal wall, to form the stoma.
When the surgery is complete, the incisions are closed with stitches (sutures) or staples.
A small tube (drain) may be placed near the incisions. This drains fluid that may build up after the surgery.
Tubes called stents may be placed through the stoma into the ureters. These help drain urine until healing is complete.
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.
An ostomy nurse will show you how to care for your stoma and bag.
Drains and stents will likely be removed while you are in the hospital. If not, you will be shown how to care for them at home
Make sure to get a contact number for your doctor, ostomy nurse, and hospital before you go home. This is in case you have problems or questions after the surgery.
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 and stoma 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 your doctor says it’s okay.
Avoid heavy lifting and strenuous activities as directed.
Avoid driving 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.
Drink plenty of water every day. This helps prevent urine odor and dehydration.
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
Decreased or no urine output for longer than 4 hours
Bloody urine with clots
Pain that cannot be controlled with medications
Nausea or vomiting that won’t stop
Pain or swelling in the legs
You will have follow-up visits so your doctor can check how well you’re healing. Sutures, staples, or tubes will be removed. You and your doctor can also discuss any further treatment you may need. If you are having trouble adjusting to your stoma and bag, talk to your doctor or ostomy nurse. You may also want to consider a support group for people with stomas. Ask your nurse for more information.
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 stoma
Abnormal levels of vitamins or minerals in the blood, requiring lifelong medication
Scarring and narrowing of the ureters
Inability to become pregnant
Start of menopause
Risks of anesthesia (the anesthesiologist will discuss these with you)