When you find out you need a urostomy, it can take time to get your head around what it means for you. It changes how your body works, so you’ll probably have questions about how it will affect your life. The short answer is that you’ll still be able to do most, if not all, the things you do now -- including work, exercise, and social outings.
A urostomy, also called an ostomy, makes a new path for urine to flow through your body. Normally, pee goes from your kidneys to your bladder, then out of your body through a tube called the urethra. But if you have a bladder problem, like bladder cancer, that path may not work the way it should.
To get a urostomy, you’ll have surgery that takes part of your small intestine to create a new path. Your pee will flow from your kidneys, through that piece of intestine, and out a stoma -- an opening your doctor makes in your belly. A pouch will fit over the stoma to collect urine. You won’t control or even feel when pee comes out.
It’ll take time to heal and get used to the new routine.
Basic Pouch Care
You’ll need to empty and change your pouch regularly. There are different kinds of pouches. Before you leave the hospital, your nurse will teach you how to care for yours.
Some helpful tips include:
- Empty the pouch when it’s a third to a half full -- it may leak if you wait longer.
- 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.
Basic Skin Care
- 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
- Dark, cloudy urine
- More mucus in your pee than usual -- it’s normal to have some white mucus threads from the stoma
- Your pee smells very strong.
- Back pain
- Upset stomach and throwing up
When Should I Call My Doctor?
Let your doctor know if you think you may have an infection. Also tell him 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.
Can I Shower, Bathe, and Swim?
The stoma is a one-way door, so water’s not a problem. You can shower and bathe with or without the pouch. But it’s best not to use bath oils or soaps with moisturizer.
Swimming’s not a problem, either. It helps to:
- 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?
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 infection. But other things can affect the smell, too:
- Foods, like asparagus, coffee, fish, garlic, and onions
- Medicines, such as antibiotics
- Supplements, like vitamins
Do I Need New Clothes?
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. 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?
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.
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.
When Can I Have Sex Again?
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.
Can I Travel?
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.
- Put your supplies in your carry-on bag.
This change in a basic body function can bring on feelings of sadness, anger, or fear. Remember to tend to your emotional well-being, too. You might find it helpful to talk to a therapist or someone who’s been through it.
The United Ostomy Associations of America has an ostomy visitor program so you can talk to someone in your area who’s also had one. Some people find ostomy support groups helpful, too.