Survivorship: Health Concerns After Cystectomy
Treatment for bladder cancer often includes surgery to remove the bladder and create a new path for urine to exit the body. These changes to the body have long term health concerns that survivors should learn about.
After removing of the bladder (cystectomy), a "pouch" or reservoir must be created to collect urine. This is called “urinary diversion.” In some survivors, a conduit (using a small piece of bowel) is used to make a small bladder that drains through a stoma in the abdominal wall, into a collection bag. Some survivors will have a "continent diversion", which uses a piece of the bowel to make a "bladder" that is connected internally or externally to an ostomy. These include the Indiana pouch, Kock pouch, and neobladder. The two pouches need to be drained with a catheter periodically.
People who have had any type of urinary diversion procedure should be followed by a urologist for their lifetime. The possible health concerns related to this surgery include:
- The change in the natural anatomy and ongoing catheterization in continent diversions can lead to frequent or chronic urinary tract infections, reflux of urine into the kidneys (which can also cause infection), kidney dysfunction and hydronephrosis (swelling of the kidney).
- Any reconstruction that utilizes a portion of the bowel can cause some long-term problems related to urine coming into contact with bowel tissue and/or the loss of some functioning bowel. This includes osteopenia or osteoporosis, vitamin B12 deficiency, kidney stones and metabolic acidosis (a condition which makes the body too acidic and is managed with alkaline medications).
- The portion of the bowel used continues to produce mucus, which you may see as white streaks in the urine. Mucus can clog the stoma, but drinking plenty of fluids can reduce the risk of this happening. In addition, this mucus can cause a positive pregnancy test (in men or women!); so female survivors should not rely on urine pregnancy tests.
- There is a risk of developing colon polyps or cancer in the portion of bowel used for the reservoir. This risk is known to be higher than the risk of colon tumors in the general population, though it isn’t clear why. There are no clear recommendations on screening for these polyps or tumors, which are thought to develop 5 or more years after the surgery. It is important to not use tobacco products, as these can increase this risk.
- The removal of the end of the small bowel (ileum) and the valve between the small and large bowels (ileocecal valve), which is used to create a continent "bladder", results in some chronic bowel issues. These include poor digestion of fats, decreased vitamin absorption, gall and kidney stones and bowel changes, including frequent, looser stools and incontinence.
- In addition, abdominal surgeries can put survivors at risk for bowel obstructions (due to scarring), hernia (due to cutting the abdominal muscle) and changes in bowel patterns. Radiation therapy to the abdomen and pelvis can increase the risk of these complications.
For people who have a stoma, it is important to learn proper care for the stoma and surrounding skin to prevent complications and skin breakdown. An ostomy nurse can help you learn how to care for the skin and place the bag (if needed). Observe the stoma for changes in color and any swelling and report these changes to your healthcare provider immediately. If the skin around the stoma becomes irritated in any way, contact your care team or ostomy nurse.
Life with an Ostomy
An ostomy is a life-long change that can come with significant psychological distress, skin problems around the stoma and relationship concerns. It can take time to adjust to life with an ostomy. Many people feel isolated after ostomy surgery and unsure of how they will enjoy life again. Remember, many people live long, healthy and fulfilling lives with an ostomy! Connecting with a support group or person can help you see how fulfilling life can be.
Sexual concerns and concerns over changes in physical appearance arise for many survivors and usually improve with time as one becomes more accepting of the changes. Using a cloth, sash or stoma cover to cover the stoma during intimate moments may be helpful. Choosing sexual positions that are comfortable and have minimal pressure on the bag or stoma can prevent problems or leakage and help one feel more relaxed during intimate moments.
Cystectomy procedures can result in changes in sexual function. We will briefly address these issues. You should feel comfortable discussing your concerns with your healthcare team.
In men who experience erectile dysfunction (ED), it can take several months to several years to regain function, if at all. Early intervention with medications is important to prevent muscle wasting (the penis is a muscle) and improve the chances of recovery of function. In cases where the erectile function does not return, survivors should discuss other options available to allow them to return to as normal sex life as possible. Most urologists can manage this aspect of care. Some types of bladder surgeries may also remove the prostate gland. If the prostate has been removed, semen will no longer be produced, so any orgasm will be "dry."
If all or most of the vagina must be removed, it may be possible to rebuild (reconstruct) a vagina with tissue from another part of the body, allowing the woman to have intercourse. The new vagina will produce little or no natural lubricant when a woman becomes sexually excited. Therefore, these survivors should prepare for intercourse by using a lubricating gel inside the vagina. Initially, the woman may feel strange sensations when the vagina is touched or "stimulated" because it was created from tissue taken from another part of the body. These feelings will become less distracting over time.
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Martini, A., Villari, D., & Nicita, G. (2017). Long-term complications arising from bowel interposition in the urinary tract. International Journal of Surgery (London, England), 44, 278–280.
Moyer, G. C., Grubb, R. L., & Johnson, F. E. (2012). Intestinal adenocarcinoma arising in urinary conduits. Oncology Reports, 27(2), 371–375. https://doi.org/10.3892/or.2011.1534
Sherman, B., & Taylor, F. (2017). Adenocarcinoma in a Koff Urinary Ileal Diversion. Urology Case Reports, 13, 126–127.
United Ostomy Associations of America, Inc. Urostomy Guide. (2017) Accessed at: https://www.ostomy.org/wp-content/uploads/2018/03/UrostomyGuide.pdf