Changes to your body

Total cystectomy and urinary diversion result in permanent changes to your body:

• During a simple cystectomy, the bladder is removed. During a radical cystectomy, 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. This causes your body to go into menopause. Your healthcare provider 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.

Preparing for surgery

Get ready for the surgery as you have been told. In addition:

• Tell your healthcare provider about all medicines you take. This includes prescription and over-the-counter medicines, vitamins, herbs, and other supplements. It also includes any blood thinners, such as warfarin, clopidogrel, or daily aspirin. You may need to stop taking some or all of them before surgery as instructed by your provider.

• Follow any directions you are given for not eating or drinking before surgery. If you have been instructed to take medicines, take them with a small sip of water.

• If you have been told to, prepare your bowel for surgery (bowel prep). This process starts 1 to 2 days before the surgery. Your provider 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 day of surgery

The surgery takes 4 to 6 hours. Afterward, you’ll stay in the hospital for 5 to 7 nights.

Before the surgery starts

• An IV (intravenous) line is put into a vein in your arm or hand. This delivers fluids and medicines (such as antibiotics). In some cases, a central or arterial line is inserted into a vein or artery somewhere else on the body. Your healthcare provider can tell you more.

• You may get medicine to prevent blood clots in your veins.

• To keep you free of pain during the surgery, you’re given general anesthesia. This medicine puts you into a state like deep sleep during 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 medicine that numbs the lower body. Talk to your healthcare provider, anesthesiologist, or nurse anesthetist about this option.

During the surgery

• An incision is made in the lower belly.

• The lymph nodes near the bladder are removed. These are checked for cancer cells (a sign that cancer has spread).

• During a simple cystectomy, the bladder is removed. During a radical cystectomy, the 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 channel 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 done, the incisions are closed with stitches 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.

Recovering in the hospital

After the surgery, you will be taken to a recovery room. There, 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 medicine to manage pain. Let your providers know if your pain is not controlled.

• You may have a tube in your nose that goes into your stomach to drain it.

• 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 healthcare provider, ostomy nurse, and hospital before you go home. This is in case you have problems or questions after the surgery.

Recovering at home

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 healthcare provider will tell you when you can return to your normal routine. Until then, follow the instructions you have been given along with the following:

• Take all medicines as directed.

• Care for your incision and stoma as instructed.

• Follow your provider’s guidelines for showering. Don't swim, bathe, use a hot tub, or do other activities that cause the incision to be covered with water until your healthcare provider says it’s OK.

• Don't lift anything heavy or do strenuous activities, as directed.

• Don't drive until your provider says it’s OK. Don’t drive if you’re taking medicines that make you drowsy or sleepy.

• Walk a few times daily. As you feel able, slowly increase your pace and distance.

• Don't strain to pass stool. If needed, take stool softeners as directed by your provider.

• Drink plenty of water every day. This helps prevent urine odor and dehydration.

When to call your healthcare provider

Call your healthcare provider right away if you have any of the following:

• Fever of 100.4° F ( 38°C ) or higher, or as directed by your healthcare provider

• 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 can't be controlled with medicines

• Nausea or vomiting that won’t stop

• Pain or swelling in the legs

Call 911 if you have chest pain or trouble breathing.

Follow-up care

You will have follow-up visits so your healthcare provider can check how well you’re healing. Stitches, staples, or tubes will be removed. You and your provider can also discuss any further treatment you may need. If you are having trouble adjusting to your stoma and bag, talk with your provider or ostomy nurse. You may also want to consider a support group for people with stomas. Ask your nurse for more information.

Risks and possible complications

• Bleeding (may require a blood transfusion)

• Infection

• Blood clots

• Pneumonia or other lung problems

• Failure to remove all of the cancer, or cancer comes back

• Damage to the nerves responsible for orgasm

• Decrease in sexual satisfaction if a portion of the vagina is removed

• Problems with the stoma

• Abnormal levels of vitamins or minerals in the blood, requiring lifelong medicine

• Scarring and narrowing of the ureters

• Bowel obstruction

• Inability to become pregnant

• Start of menopause

• Risks of anesthesia. The anesthesiologist or nurse anesthetist will discuss these with you.