A urostomy is a common surgical procedure in the treatment of bladder cancer. Although this surgery has life-saving benefits, it can also bring many changes to your life.
If you have a urostomy, you can develop new routines that help to support your health and return to activities you enjoy.
The bladder is a hollow, flexible organ. Its main function is to store urine and push it out of the body.
When there’s cancer in the bladder, a tumor may form. If bladder cancer isn’t treated, it may spread to other parts of the body.
Surgery is common in the treatment of bladder cancer. Some people may have their entire bladder removed. A surgeon then must create a way to store and pass urine.
There are a few options:
- Incontinent diversion: A doctor attaches a piece of intestine to the ureters, which carry urine from the kidneys. This creates an ileal conduit, or pathway, from the kidneys to an opening in the front of the stomach called a stoma. A small bag called an ostomy bag attaches to the skin around the stoma to collect urine. In a cutaneous ureterostomy, the ureters are attached directly to the stoma. This procedure is also called a urostomy.
- Continent diversion: This works in a similar way to incontinent diversion, but instead of a bag at the stoma, a surgeon creates a one-way valve. This is emptied several times a day using a tube.
- Neobladder: This involves creating a new bladder inside the body using a piece of intestine.
After urostomy surgery, you may experience a period of transition. It may take time to develop a plan to care for your overall health and changes in your body, such as managing an ostomy bag. Your healthcare team and personal support system can help.
Most people empty the urostomy pouch as often as they would have gone to the bathroom before surgery or several times a day.
Because bacteria can collect in the pouch, and because a full pouch can put pressure on the seal, try to empty the bag when it’s about one-half or one-third full.
You can empty the bag by sitting on the toilet and opening the valve at the bottom of the pouch. The contents will drain directly into the toilet. After closing the valve, you can use toilet paper to dry the end. The paper doesn’t need to be sterile.
Some people use a night drainage system, where a tube is attached to the pouch valve and urine drains into a larger container while they sleep.
How often you change the pouch depends on the type you have. It may be every day, every few days, or even once a week.
To avoid urine leaking onto your supplies, you may want to wait about
You can change the bag in any physical position, such as lying down or standing, which makes it easy for you to see your stoma. Using a mirror can sometimes help.
Place your supplies on a clean surface and clean your hands well before changing the bag. You may want to use tissues or towels to absorb urine from the stoma while you change the bag.
Over time, your stoma will settle in size, and you can get precut urostomy bags to fit. In the period of time after surgery, the stoma may change size, so you may have to measure and cut an opening in the bag yourself.
You don’t need to eat or drink a special diet after urostomy surgery. You may find your appetite is low at first, but it’s a good idea to eat healthily and drink plenty of fluids.
Although there’s no specific diet with a urostomy, you may want to drink beverages and eat foods that keep your urine acidic.
Drinking plenty of water or other nonalcoholic liquids, at least 2 quarts per day, can help achieve this. Acidic urine can help prevent urinary crystals on the stoma or skin.
Since a piece of the intestine is removed during urostomy surgery, you may experience bowel movement changes. Your bowel movements may be looser.
You don’t have to bathe with your urostomy bag. If you remove it, try to wash around the stoma using only water and dry the area well. This will help make sure the bag adheres well to the skin when you place it back on.
Some people choose to trim or shave the hair on the skin around the stoma. This can help with the bag sticking well and can also make it less painful to take off.
If you do shave the area, do so very carefully using a dry razor and stoma powder. Rinse and dry the skin well after shaving.
Observe your skin under and around the pouch for sensitivities. A pouch cover may help. You can also try different barriers and tape if they irritate your skin.
When you remove a pouch, do so gently by pulling the skin away from the pouch and not the pouch away from the skin.
Your healthcare team or insurance company may offer assistance in finding a place to order urostomy supplies.
Try to keep your supply stocked and order new items a few weeks before they run out, to allow for shipping and any delays.
You can do many of the same activities you enjoyed before your urostomy surgery, including swimming. For these occasions, you can use a smaller bag and waterproof dressing.
Ostomy pouches are designed to be discreet, so others should not know you’re wearing one.
You don’t need to talk to anyone about the urostomy if you don’t want to, but people often find close friends and family are understanding when they do.
If you’re in a relationship and have had urostomy surgery, you may have concerns about intimacy.
Talking with your partner or a healthcare professional, as well as joining a support group with others who have a stoma, can help you manage these concerns.
If you’re someone close to a person who’s had urostomy surgery, you can be an important source of support and comfort.
Nonetheless, many partners find the experience challenging. You can speak on your own, or with your partner, to a urostomy nurse or counselor about your own feelings about what it means for your relationship.
Urostomy surgery can be an important treatment option for bladder cancer. The procedure can bring many changes into your life, but over time many people adopt a urostomy management plan that supports their health and well-being.