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.
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.
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 1/3 full to keep it flat.
- You can wear tight clothing and even bathing suits. Ostomy wraps or bands can help reduce any bulge and keep it in place.
- Try pouch deodorants if you’re worried about smells when you empty it.
- If you want, wear a smaller bag or a waterproof cover when you swim.
- Go easy on beverages near your bedtime, and attach a larger night drainage bag to hold more urine while you sleep.
Most people can return to work without any problems. But if your job involves heavy physical labor, you may need to wear a support belt for your stoma. Ask your medical team.
You can travel as you did before. It’ll just take a bit of planning. Pack extra supplies, such as a pouch, clamp, and scissors. If you fly, carry a note from your doctor to explain your condition and to ask airport screeners for privacy.
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.
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, injections, 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.