Life with Urinary Diversion and Urostomy

What are a urinary diversion and a urostomy?

When the bladder is removed (called a cystectomy), a small piece of bowel is used to make a "pouch" or reservoir to collect urine. This is called “urinary diversion.” A urostomy is a surgically made opening through the abdominal (belly) wall where urine can leave the body. Most, but not all urinary diversion procedures use a urostomy. There are a few different types of urinary diversion procedures.

What are the different types of urinary diversions?

There are 3 types of urinary diversions used after cystectomy (bladder removal):

• Ileal or colonic conduit – A small piece of bowel (ileum or colon) is used to create a reservoir for urine, which is attached to the abdominal (belly) wall to form a stoma (hole to drain the urine). 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 the 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 every so often using a catheter inserted into the stoma.
• Neobladder – A piece of bowel is used to create a reservoir to collect urine. The reservoir is connected to the urethra (the tube that takes urine out of the body) instead of a stoma. This allows close to normal urination. Patients will need 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 problem.

What are the possible long-term problems related to a urostomy?

If you have had any type of urinary diversion procedure, you should be followed by a urologist for your 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.
  • Hydronephrosis (swelling of the kidney).
• Any procedure that uses a portion of the bowel can cause some long-term problems related to urine touching bowel tissue and/or the loss of part of the bowel. This includes osteopenia or osteoporosis, vitamin B12 deficiency, kidney stones, and metabolic acidosis (a condition that makes the body too acidic and is managed with alkaline medications).
• The part of the bowel used still produces mucus, which can clog the stoma. This mucus can cause a positive pregnancy test (in men or women!). Female survivors should not rely on urine pregnancy tests.
• There is a risk of developing colon polyps or cancer in the part of the bowel used for the reservoir. This risk is known to be higher than the risk of colon tumors in the general population, but 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,” leads to 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 the skin around it 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 or swelling and report these changes to your healthcare provider right away. 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 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 are 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 peer who has had a similar procedure can help you see how fulfilling life can be.

Can I have a normal sex life with an ostomy?

Sexual health changes and worries about changes in physical appearance arise for many survivors. These usually improve with time as you get used to the changes and develop your own management strategies. Using a cloth, sash or pouch cover to cover the pouch during intimate moments can be helpful. Choosing sexual positions that are comfortable and have minimal pressure on the bag can prevent problems or leakage and help you feel more relaxed during intimate moments.

What changes in sexual function might I experience?

Cystectomy procedures can lead to changes in sexual function. 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.

For Men:

In men who experience erectile dysfunction (ED), it can take months to years to regain function, if at all. Early intervention with medications is important to prevent muscle wasting (the penis is a muscle) and to improve the chances of regaining function. If erectile function does not return, you should discuss other options available to allow you 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. If your prostate is removed, semen will no longer be produced, so your orgasm will be "dry" (nothing will be ejaculated).

For Women:

If all or most of the vagina must be removed, it may be possible to rebuild (reconstruct) the vagina with tissue from another part of the body, allowing you to have intercourse. The new vagina will produce little or no natural lubricant when you become sexually excited. Therefore, you should prepare for intercourse by using a lubricating gel inside your vagina. Initially, you 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 should become less bothersome over time.

Where can I find support for life after a urinary diversion?

There are a few places to get support after a urinary diversion procedure:

• 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 put you in touch with an ostomy nurse you can call if issues come up.
• If you have a neobladder, you will need to work with a physical therapist to train your new bladder.
• Many people find great comfort and support in a support group, whether it is in person or online. There are quite a few virtual communities that address the issues you may face with an ostomy (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 come up years after getting the ostomy and you will 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/