Living with a Urostomy
What is a urostomy?
A urostomy is a surgically created opening through the abdominal wall to allow urine to exit the body. Urostomy is done when the bladder has to be removed (I.e. for cancer or injury) or isn’t functioning properly. The anatomy of the ostomy varies, depending on which type of urinary diversion (rerouting) is used. A small piece of bowel is used to make a reservoir to collect urine inside the body. This functions as the replacement for the bladder, where urine typically collects.
What are the different types of urostomies?
There are 3 basic ways to re-route urine from the body:
- Ileal or colonic conduit – these use a small piece of bowel (ileum or colon) to create a reservoir for urine, which is attached to the abdominal wall to form a stoma. The stoma will have a bag attached to the abdominal wall to collect the urine as it drains.
- Internal continent pouch or reservoir – these include the Kock pouch and the Indiana pouch. These pouches use a piece of bowel to create a reservoir to collect urine. The end is attached to the abdominal wall to form a stoma. The end of the bowel has a valve on it to keep the urine from leaking out of the stoma. The pouch is drained by the patient periodically using a catheter inserted into the stoma.
- Neobladder – this is similar to the internal continent pouch in that it collects urine into a reservoir created from a piece of bowel. However, it is connected to the urethra instead of a stoma. This allows close to normal urination. This does require a significant amount of rehab / physical therapy to retrain the muscles to stop, start and control this urine flow. Many people never achieve complete continence and night-time incontinence is a common issue.
What are the possible long-term problems related to a urostomy?
People who have had any type of urinary diversion procedure should be followed by a urologist for their lifetime.
- The change in the natural anatomy and the need for 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 bowel used continues to produce mucus, which can clog the stoma. 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.
How do I care for the stoma?
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 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.
Can I have a normal sex life with an ostomy?
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 urine pouch. There are pouch covers available to help cover the pouch during intimate moments or one may use some type of cloth or sash. Choosing sexual positions that are comfortable and have minimal pressure on the bag can prevent problems or leakage and help one feel more relaxed during intimate moments.
What changes in sexual function might I experience?
Cystectomy procedures can result in sexual function issues. In men, nerve damage can lead to erectile dysfunction. In women, the surgery may remove all or part of the vagina, resulting in a smaller vagina or no vagina. We will briefly address these issues, which survivors dealing with these complications should discuss with their 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 erectile function does not return, survivors should discuss other options available to allow them to return to as normal a sex life as possible. Most urologists can manage this aspect of care. Some types of bladder surgeries may also remove the prostate gland. In these survivors, semen will no longer be produced, so their 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.
Where can I find support for living with an ostomy?
There are a few things that can provide support regarding life with an ostomy:
- An ostomy nurse can help with the many aspects of ostomy care, including skin healing, appliance/bag use, complications and changes in the stoma over time. Ask your healthcare team to help you find one you can call if issues arise.
- Many people find great comfort and support in a support group, whether it is in person or online. There are quite a few wonderful virtual communities that address the issues a person with an ostomy faces (just search for "ostomy support").
- Anyone with an ostomy should find a place or healthcare provider they can turn to for reliable information and assistance, as situations may arise years after getting the ostomy and you need to know where to turn for help.
Resources for Ostomy Support
These websites provide helpful information about dealing with the many concerns related to having an ostomy.
United Ostomy Associations of America, Inc. - https://www.ostomy.org/
Wound Ostomy and Continence Nurses Society - https://www.wocn.org/
Ostomy Canada Society - https://www.ostomycanada.ca/
Lee, D. J., Tyson, M. D., & Chang, S. S. (2018). Conduit Urinary Diversion. Urologic Clinics of North America, 45(1), 25-36.
Martini, A., Villari, D., & Nicita, G. (2017). Long-term complications arising from bowel interposition in the urinary tract. International Journal of Surgery, 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.
Sherman, B., & Taylor, F. (2017). Adenocarcinoma in a Koff Urinary Ileal Diversion. Urology case reports, 13, 126-127.
Urostomy Guide from the United Ostomy Associations of America, Inc. - https://www.ostomy.org/wp-content/uploads/2018/03/UrostomyGuide.pdf