Managing Your Life After Bladder Removal

At night, you can attach a tube to drain the pouch into a larger container so you don't have to get up. You'll empty that and clean the tubing and container every morning.

Using a cutaneous reservoir

You won't wear a bag, but you'll have a stoma through which you'll place a tube called a catheter to drain the internal pouch.

• Empty the pouch every two hours at first. Over time, it will stretch to hold more urine.
• Wash your hands and the skin around your stoma before and after handling the catheter.
• You can stand or sit and drain the pouch directly into the toilet.
• Clean the catheter each time you use it.
• Cover the stoma with a small dressing to prevent leaks.

Because the pouch is made of a piece of your intestine, it will naturally produce mucus. You'll flush this out with a catheter once a day.

Using a neobladder

A physical therapist will train you to empty the neobladder. You won't get the feeling that you need to pee, so you'll use the bathroom on a schedule.

• Go every two to three hours during the day and three to four hours at night at first. Over time, the neobladder will stretch to hold more urine.
• Sit on the toilet and bear down slightly with your abdominal muscles or press on your lower abdomen to empty the neobladder.
• If it doesn't empty completely, you'll use a catheter.

Bathing and Swimming

It's safe to be in the water after bladder removal surgery as soon as you've healed and your doctor gives the OK. But you'll need to keep a few things in mind.

With a urostomy bag:

• You can keep the pouch on or take it off when you take a bath or shower. 
• Clean the stoma every day with warm water and mild soap and gently pat dry.
• Remember that when the pouch is off, urine will leak out of the stoma. 
• Keep the pouch on when you swim. Empty it first, and secure the edges of the skin barrier with waterproof tape if needed. 
• If you're in the ocean or a lake, use a one-piece pouch so you can throw the whole thing away when you're finished.

Exercise

You can go back to any of the physical activities you've always enjoyed, but you'll need to be careful with things like weightlifting and contact sports. The muscles around a stoma may be weak for a long time, and straining can cause a hernia. If you take a hard hit, it can damage your stoma or dislodge the pouch, but you can buy special guards or belts for protection. 

Sweat will loosen the adhesive on the skin barrier. If you work out heavily, you may need to replace it more often.

Check with your care team if you're uncomfortable when you bend or twist for exercise or sports. They may recommend a more flexible pouch system.

Clothing

You don't need to change what you wear after bladder removal surgery. Stomas are normally placed where they aren't in the way of your waistband. If it makes you more comfortable, you can tuck the urostomy bag into your underwear to secure it, or use a special belt or tape. Some people buy decorative covers for their bags.

Intimacy

This can be a big issue after bladder removal surgery for bladder cancer. Often, other nearby organs are also removed, including the prostate, uterus, ovaries, or vagina. This can greatly affect your sexual response.

On top of that, if you have a stoma or urostomy bag, you may feel self-conscious about your appearance or worried about leaks.

These tips can make intimacy easier:

• Ask your doctor when it's safe to have sex again.
• Tell them if you have pain or problems with sensation, arousal, or orgasm. There are treatments and therapies that can help. 
• Empty the pouch before sex to lower the risk of leaks.
• Find a position that takes pressure off the pouch.
• Switch to a smaller pouch during sex.

As with any intimate relationship, it's important to communicate openly with your partner about what you're both feeling.

Travel

Bladder removal surgery shouldn't keep you from traveling. You'll just need to plan ahead.

• Be mindful of how often you need to empty your pouch or neobladder, knowing that delays are always possible. Go before you board the airplane or plan out road trip rest stops. 
• If you have a urostomy pouch, you can travel with a special container that straps to your leg and holds overflow from your regular bag. With a neobladder, pads or absorbent underwear will help prevent accidents.
• Pack more supplies than you think you'll need, and find out where you can buy extras. 
• Keep your supplies in your carry-on luggage and out of the sun if you're driving.
• Have a note from your doctor in case you need it to show airport or border security.
• Research medical care options where you're going and check how your insurance handles emergencies. 

Eating and Drinking

Your diet after bladder removal surgery won't change much.

It's recommended that you get at least a half-gallon of liquid every day to lower your risk of a urinary tract infection. If your doctor finds that your urine isn't acidic enough, they may have you avoid citrus or take a vitamin C or cranberry supplement.

Some people have trouble absorbing enough vitamin B12 because of the amount of intestine removed to make the urinary diversion. In that case, you may need vitamin shots.

You might also avoid foods that cause strong-smelling urine, although if the urostomy bag fits properly, you shouldn't notice a smell unless you're emptying it.

Protecting Your Skin

If urine sits on the skin around your stoma, it can cause irritation and damage. To protect it: 

• Make sure the urostomy bag and skin barrier fit correctly. Accessories like a stoma ring help ensure a good seal.
• Change the skin barrier as scheduled or at the first sign of a leak. Be gentle when you remove it.
• Clean the skin under the barrier each time you change it.
• Don't use lotions or oils that can keep the barrier from sticking well. Apply it when your skin is cool and completely dry.
• Stoma powder can help dry out skin that's irritated and oozing fluid. 

Signs of Infection

After bladder removal surgery, you have an increased risk of a urinary tract infection. Watch for signs including:

• Fever or chills
• Strong-smelling or discolored urine
• Increased mucus in your urine
• Pain in your lower back or sides
• Nausea or vomiting
• Loss of appetite
• Extreme tiredness

When to Call the Doctor

Call if you notice:

• Changes in the appearance of your stoma or the skin around it
• Pain or irritation
• Trouble getting the catheter into your stoma (with a cutaneous reservoir) 
• Bleeding from or around your stoma that doesn't stop quickly
• Injury to your stoma
• A bulge around your stoma, which could signal a hernia
• Signs of infection, like a fever or bad-smelling urine

Also get in touch with your health care team if you have any issues with your urostomy bag system. If you lose or gain weight, it may not fit correctly anymore. Fortunately, there are lots of options.