Managing Your Life After Bladder Removal

If you’ve had your bladder removed, you’ll need to get used to a new way to pass urine from your body. The operation you had, called a cystectomy, is a lifelong change. You may have to bathe differently and adjust your travel habits. It can affect your body image, and you may worry about its impact on your relationships and sex life.

With enough time, you should be able to do almost everything you did before. Even if you now use a urostomy bag (to collect your urine), you can go back to work, exercise, and swim. People might not even notice you until you tell them.

Bathroom Routines

How you pee will depend partly on what type of surgery you had. There are three kinds:

Conduit. A tube made from a piece of your small intestine funnels your pee from the kidneys directly to the outside of your body. A surgical hole on your belly lets the open end of the small intestine drain the urine into a small, flat pouch. You’ll have to empty it several times a day.

Neobladder. Instead of a tube, your surgeon takes a bigger piece of your small intestine to create something like a substitute bladder. It hooks up on the bottom to the urethra -- a duct that in men runs down the penis and in women to a hole next to the vagina -- so you can pee more or less as you used to. But you won’t have normal muscle reflexes that kick in when the bladder is full. So some people may need to wear a pad or a condom device to catch leaks, especially at night. You also sometimes may need to insert a thin tube called catheter into your urethra to empty the neobladder completely.

Reservoir. Your surgeon remakes a section of your intestine into a holding pouch inside your abdomen. You won’t need to wear a waste bag on the outside. You insert a catheter into the open end of the intestine that sticks out through your belly, called a stoma, and drain the internal reservoir about half dozen times a day. You might get leaks at the site, which may need another surgery to fix.

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Daily Life

Allow yourself time to get comfortable with the changes to your body. If you are, chances are your family and friends will be, too.

Some tips can help ease your life with an outside pouch:

  • Empty it when it’s one-third full to keep it flat.
  • Before you empty it, put some toilet paper in the toilet to keep pee from splashing up.
  • Make sure to close the spout on the pouch after you empty and change it.
  • Change your pouch in the morning before you eat or drink, so you’re less likely to have problems with dripping.
  • At least at first, use a mirror to make sure you place the pouch correctly.
  • Try pouch deodorants if you’re worried about smells when you empty it.

Basic Skin Care With a Urostomy

If you have a pouch, you’ll need to pay attention to the skin around the stoma to keep it from getting sore. To avoid skin problems:

  • Be gentle when you remove the pouch.
  • Change your pouch as often as your nurse tells you to. Doing it too often or not enough can cause skin problems.
  • Don’t use more tape than you need.
  • Make sure your pouch fits your body’s shape.
  • Measure your stoma carefully so you can cut your pouch’s skin barrier to fit closely.

Signs of Infection

When Should I Call My Doctor?

Let your doctor know if you think you may have an infection. Also tell them if:

  • You have bleeding from the stoma that doesn’t stop with a little pressure.
  • You have pain, cramping, or swelling in your belly.
  • Your pouch leaks regularly or doesn’t stay in place.
  • Your skin around the stoma keeps getting red or sore.
  • The stoma turns dark purple, brown, or black.

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Can I Shower, Bathe, and Swim With a Urostomy?

A stoma is a one-way door, so water’s not a problem. You can shower and bathe with or without your pouch. But it’s best not to use bath oils or soaps with moisturizer.

Swimming isn’t a problem, either. It helps to:

  • Wear a smaller bag or a waterproof cover when you swim.
  • Wear your pouch, but empty it before you get into the water.
  • Use waterproof tape around the edges of the pouch.
  • Wait a few hours after you put on a new pouch before you swim.

Should I Be Careful With What I Eat or Drink With a Urostomy?

No, just drink plenty of fluids, like water. It’s best to limit caffeine and alcohol, because they’re less likely to keep you hydrated. That’s important to lower your chance of infection.

Go easy on beverages near bedtime, and attach a larger night drainage bag to hold more urine while you sleep.

Your pouch is odor-proof, so you won’t smell anything until you empty it. If your pee has a very strong odor, it could be a sign of an infection. But other things can affect the smell, too:

Do I Need New Clothes After a Urostomy?

Loose-fitting clothes may be more comfortable at first, but you should be able to switch back to many of your regular clothes in time. Ostomy wraps or bands can help reduce any bulge and keep it in place. You may need to give up belts that press on the stoma or clothes that are tight over it, though.

When Can I Go Back to Work?

Most people can return to work without any problems. It’ll take some time to heal from the surgery, so your doctor will let you know when it’s safe to go back. If you do heavy lifting at work, tell your doctor -- you may need to wear an ostomy support belt.

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Can I Exercise?

Yes, but check with your doctor first. Contact sports may be an issue because you need to avoid getting hit in the stomach. You may be able to find special equipment. Ask your doctor what’s safe for you.

Sex and Intimacy

Taking out your bladder can change your sex life. This is especially true if other organs were removed at the same time as your bladder. Some changes are temporary, but some may not be.

Your doctor will let you know when you can have sex and if you can expect any problems. Most women don’t have issues, but some men do.

Sex may be a little awkward at first. Your partner may be afraid of hurting you, and you may feel unsure of yourself. Go easy and talk about your feelings -- that will help make it more comfortable.

Men: If your bladder was removed because of cancer, usually your prostate and the tubes that carry semen are taken out as well. You can still have an orgasm, but you won’t ejaculate.

It’s not uncommon to have nerve damage after surgery, and you may have trouble getting an erection. Treatments for erectile dysfunction can help with that. They include medication, shots, and vacuum pumps to stiffen the penis. Give yourself a year before you make permanent decisions about erection problems, in case your nerves recover.

Women: If your cancer was large or in more than one place in the bladder, your surgeon probably also removed your uterus, cervix, and part of your vagina. If your ovaries were taken out, that could trigger menopause. You might find that sex is less comfortable because your vagina is smaller or drier. Your doctor may prescribe lubricants or a dilator to stretch your vagina. With time, you and your partner can find a new rhythm with your sex life and even find new ways to make each other feel good.

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Can I Travel With a Urostomy?

Yes, it just takes a little planning. Make sure to take about double the supplies you think you’ll need.

If you’re traveling by car:

  • Have a good idea of where you may stop for bathroom breaks.
  • Don’t leave your supplies in a hot car -- they could melt.

If you’re flying:

  • Travel with a doctor’s note saying you have a urostomy. This can clear up any questions as you go through security.
  • Ask airport screeners for privacy.
  • Put your supplies in your carry-on bag.

Support

Studies show that how satisfied you feel about your new life depends largely on how well you adapt. It’s understandable to feel depressed. This change in a basic body function can also bring on feelings of sadness, anger, or fear. Remember to tend to your emotional well-being, too.

It might help you to talk to your family and friends with candor. You might find it helpful to talk to a therapist or someone who’s been through it. If you think counseling or medication would help, ask your doctor.

If you have an ostomy, the United Ostomy Associations of America has a visitor program so you can talk to someone in your area who’s also had one.

WebMD Medical Reference Reviewed by Carol DerSarkissian on October 28, 2019

Sources

SOURCES:

Mayo Clinic: “Bladder cancer,” “Bladder removal surgery,” “Adapting to life after colostomy, ileostomy or urostomy.”

Cancer Research UK: “Living with bladder reconstruction.”

American Cancer Society: “Second Cancers After Bladder Cancer,” “American Cancer Society Guidelines for the Early Detection of Cancer,” “Radical Cystectomy,” “What Is a Urostomy?” “Urostomy Guide.”

Brady Urology at Johns Hopkins Hospital: “Quality of Life After Surgery for Bladder Cancer.”

United Ostomy Associations of America: “Continent Urostomy Guide.”

Beth Israel Medical Center: “Understanding and Caring for Your Urostomy.”

United Ostomy Associations of America: “Urostomy Guide.”

University of North Carolina Health Care System: “Living with Your Urostomy: A Guide to Home Care.”

Macmillan Cancer Support: “Living with a Urostomy.”

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