Life with Urinary Diversion and Urostomy

What is a urinary diversion and a urostomy?

When your bladder is removed (called a cystectomy), a small piece of bowel is used to make a "pouch" or reservoir. A pouch or reservoir is an object that collects urine. This is called “urinary diversion.” Diversion means that your urine takes a new route to leave your body.

A urostomy is an opening made through the abdominal (belly) wall where urine can leave your body. Most, but not all urinary diversion procedures use a urostomy.

What are the different types of urinary diversions?

There are a few types of urinary diversions used after cystectomy:

Incontinent Diversion (also called standard or conventional) means you don’t have control over when or how much you urinate:

• Ileal or colonic conduit – A small piece of bowel (ileum or colon) is used to make a reservoir. This reservoir is attached to your abdominal wall to form a stoma (hole to drain the urine). The stoma will have a bag or pouch attached to it to collect the urine on the outside of your body as it drains. You will always have this diversion.

Continent Diversion means you do have control over when and how much you urinate:

• Internal (inside the body) continent pouch or reservoir – These include the Kock pouch and the Indiana pouch. These pouches use a piece of your bowel to make a reservoir to collect urine. The end is attached to your 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. You will drain the internal pouch every so often using a catheter (tube) placed into the stoma.
• Mitrofanoff procedure: This procedure is often done in children. This diversion has a few different ways it can be done. A tube is made from your appendix (most common), fallopian tube, or part of your ureter. One end of this tube is connected to your bladder. The other end is attached to your abdominal wall to form a stoma. You will need to use a catheter to drain your urine.
• Neobladder – A piece of bowel is used to make 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 lets you urinate almost normally. You will need rehab/physical therapy (PT) to retrain your muscles to stop, start, and control this urine flow. Many people are unable to have complete continence and night-time incontinence (not being able to hold your urine) is common.

What are some long-term problems related to a urostomy?

If you have had a urinary diversion procedure, you should be followed by a urologist for your lifetime.

• The change in your natural anatomy (where and how your body organs work) and the need for catheterization (using a tube to empty urine) in continent diversions can lead to:
  • Frequent or chronic urinary tract infections.
  • A backflow of urine into the kidneys (which can also cause infection).
  • Kidneys not working as they should.
  • Hydronephrosis (swelling of the kidney).
• Any procedure that uses a part of the bowel can cause some long-term problems. This is due to urine touching bowel tissue and the loss of part of your bowel. This includes osteopenia or osteoporosis (bone weakening), low levels of vitamin B12, kidney stones, and metabolic acidosis (your body becomes too acidic).
• The part of the bowel that is used during a urinary diversion still makes mucus, which can clog the stoma. This mucus can cause a positive pregnancy test (in men or women). Female survivors should have blood tests to confirm pregnancy.
• There is a risk of getting 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 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 your risk.
• If the end of your small bowel (ileum) and the valve between your small and large bowels (ileocecal valve) is used to create a continent "bladder,” it can cause some chronic bowel issues. These include not digesting fats well, not being able to absorb vitamins, gall and kidney stones, and bowel changes, including frequent, looser stools and incontinence.

How do I care for the stoma?

If you have a stoma, it is important to learn proper care of the stoma and the skin around it. Taking care of your stoma will prevent complications and skin breakdown. An ostomy nurse can help you learn how to care for the skin and place the bag (if needed). Look at the stoma often for changes in color or swelling and report these changes to your healthcare provider right away. If the skin around the stoma changes in color (becomes red) or inflamed , call your care team or ostomy nurse.

Life with an ostomy

An ostomy is a life-long change that can come with psychological problems, skin problems around the stoma, and relationship concerns. It can take time to get used to life with an ostomy. Many people feel alone 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?

You may have sexual health changes and worries about your physical appearance. This will often get better as you get used to the changes and figure out how to take care of your urostomy. Using a cloth, sash, or pouch cover to cover the pouch outside of your body (if you have one) during intimate moments can be helpful. Choosing sexual positions that are comfortable and have less 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 have?

Bladder surgeries can affect your sexual health. 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 you should talk about with your healthcare team.

For Men:

In men who have 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 your chances of regaining function. If erectile function does not return, you should talk about other options available to help you 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 made, 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, making intercourse an option. The new vagina will produce little or no natural lubricant when you become sexually excited. You should get ready for intercourse by using a lubricating gel inside your vagina. At first, you may have strange feelings 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, where to buy supplies, issues, 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 comfort and support in a support group, whether it is in person or online. There are quite a few online communities that can help with 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 help. 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/