Care After a Cystectomy (Bladder Removal)

A cystectomy is an operation to remove the urinary bladder.

Two groups of cancer survivors may have undergone a cystectomy during their childhood cancer treatment:

• Patients who have a cystectomy as part of their cancer treatment. Successful treatment of rhabdomyosarcoma of the urinary bladder and prostate, Ewing sarcoma, and other sarcomas in the pelvic area sometimes require removal of the bladder.
• Patients who require a cystectomy because of treatment complications, such as hemorrhagic cystitis (bleeding) or bladder fibrosis (scar tissue).

How Urine Leaves the Body After a Cystectomy

After the bladder is removed, surgeons create a new passageway for urine to leave the body. This process is called diversion. There are 3 main types:

• Incontinent diversion – This passageway is usually made through a loop of small intestine that is separated from the rest of the bowel. It is called an ileal conduit or urostomy. The ileal conduit is connected to the outside of the abdomen by way of an opening called a stoma. Internally, the ureters empty into the conduit, when then serves as a pipeline for urine to flow directly through the stoma into a pouch worn outside the body.
• Cutaneous continent diversion – An internal pouch (reservoir) is made from intestine and placed within the abdomen in front of the kidneys. The ureters are then connected to this pouch. The appendix or another short piece of small intestine is used to create an extension from the pouch through the abdominal wall to the surface of the skin, often around the belly button. This opening is called a “stoma.” This design prevents urine from flowing back into the kidney (reflux) or spilling out onto the skin. Urine collects in the reservoir and removed several times a day by insertion of a catheter (tube) into the stoma.
• Orthotopic neobladder – This procedure makes a new bladder from bowel. The “neobladder” is connected directly to the urethra. Some people with a neobladder are able to urinate naturally while others may require a catheter to empty the bladder.

Potential Issues After Cystectomy

• Survivors who have an ileal conduit or ileal pouch may have leakage of urine around the stoma. This may lead to irritation of the skin and infection at the site of the stoma. Scar tissue (strictures) may form around the ureters or the conduit and block the flow of urine from the kidneys. Reflux of urine into the kidney may occur. Reflux increases the risk of a urinary tract infection or kidney stones.
• Incontinence, or the inability to control passage of urine, may occur after a neobladder is created. People with this problem may benefit from muscle re-training to control urination effectively. If there is persistent urine leakage, pressure testing of the neobladder and urethra may help inform decisions about treatment.
• Bladder surgeries involving portions of the small intestine sometimes cause abnormal levels of chemicals and fats in the blood. These problems may result in diarrhea, kidney stones, and/or low levels of Vitamin B12.
• Cystectomy may also increase the risk of sexual dysfunction in both men and women. Surgery and medications may treat this complication.

Health Care After Cystectomy

• People who have had a cystectomy should see urologist regularly. An enterostomal nurse (ET nurse) may give advice about skin care, appliance fitting, and supplies. The nurse can also help trouble-shoot any problems with catheterizations.
• Survivors who had bladder surgery involving a portion of the small intestine should have a yearly blood test to check vitamin B12 level starting 5 years after bladder surgery.
• Patients should call their provider when they have fever, pain in the mid-back or side, blood in the urine, or severe irritation of the skin.
• Patients who do self-catheterization and have difficulty inserting the catheter should seek immediate help from a medical care provider. This complication may mean that the pouch has ruptured or that the pouch will rupture if the reservoir cannot be drained properly. This can result in serious infection from leakage of urine into the abdomen or pelvis.
• Survivors who have had a cystectomy should contact a medical care provider immediately if they experience vomiting or abdominal pain. These symptoms may indicate a bowel blockage (obstruction) from scar tissue.