Health Society of South Africa

LIVING WITH YOUR UROSTOMY
A guide to self-care

A New Beginning

Have you just had an urostomy? Or are you about to have one? If so, you may think that life will never be the same. It's true that you'll need to make some changes in your daily routine. Once you adjust to your urostomy, you'll most likely find that you can do what you did before. You may be able to do more. Read on to get started.

What is an Urostomy?
An urostomy is a type of surgery that is performed when the bladder is diseased or damaged. This provides a new way for the body to release urine (waste fluid). Surgery is done on the large or small intestine and the ureters to create a passage for urine to flow through. A small opening is then made on your abdomen (lower belly). This allows urine to travel out of the body.

Adjusting to a Change in Your Body
An urostomy changes the way your body releases urine. This may leave you feeling anxious or depressed at first. But give yourself time to adjust. Before long, caring for your urostomy will be part of your daily routine, like brushing your teeth or shaving. And you'll gain new control over your urinary problems. This will help you live a normal and active life.

Help from Your Health Care Team
You'll play the biggest role in your recovery. But you won't be alone. Your health care providers will be there to help you. They will explain your urostomy and teach you how to care for it. They can also help you adjust to the changes in your body.

Your surgeon will answer questions you may have about the urostomy.
An ET (enterostomal therapy) nurse or other health care provider will show you how to care for your
urostomy.
Other people who have had an urostomy, such as support groups, can help you, too.

Understanding Your Urostomy

A urostomy makes a new way for urine to travel through your body. The surgeon brings part of the urinary tract or some of the digestive tract through the abdominal wall. Any of three types of surgery can be done. In all cases, a small opening (stoma) is made on the abdomen. This allows urine and mucus to pass out of your body.

The Urinary Tract
This tract rids your body of urine and is made up of many parts. They include two kidneys, two ureters, the bladder and the urethra.

Each kidney removes unneeded substances and extra water from your blood. This makes urine.
Each ureter transports urine from the kidneys to the bladder.
The bladder stores urine.
The urethra releases urine from the body.

The Digestive Tract
This tract starts with the mouth and ends with the anus (the opening through which stool passes). Other parts of the digestive tract include the small intestine, the ileum and the large intestine.

The small intestine is a tube about 6 metres long. It absorbs nutrients from food. The tube's lining produces mucus, a thick slippery substance.
The ileum is the last section of the small intestine. Digested food passes from the ileum into the colon as liquid waste.
The large intestine (colon) absorbs water and minerals, such as salt, from body waste and turns this into solid stool.

An Ileal Conduit
This surgery makes a passage (conduit) from a segment of the ileum. Urine leaves the body through this passage. One end of the conduit is sewn shut. The other end is brought through the abdominal wall to form a stoma. The ureters are detached from the bladder and connected to the conduit. Urine flows through the ureters and into the conduit. Urine then leaves the body through the stoma. This surgery does not change the way stool passes from your body. An ileal conduit is the most common urostomy performed.

A Colon Conduit
A colon conduit is done much like an ileal conduit. But with a colon conduit, the passage is made from a piece of the colon and not the ileum. The resulting stoma is bigger, as the colon is wider than the ileum.

A Ureterostomy
In a ureterostomy, the ureters are brought out through the abdominal wall to form one or two stomas. In this case, the stoma(s) is smaller. This is because the ureters are more slender than the ileum or the colon.

The Stoma
The stoma is made by bringing the end of the ileum, the colon or one or both ureters through the abdominal wall. This end is then turned back on itself, like a cuff.

The stoma is pink or red and moist. This is because the inside of the ileum, the colon, and the ureters are like the inside of the mouth. The stoma shrinks to its final size 6 to 8 weeks after surgery. Then it will be round or oval. The stoma will either be flat or it will sit a quarter inch to half an inch above the skin. With an ileal or colon conduit, both urine and mucous pass through the stoma. After a ureterostomy, only urine goes through the stoma.

Selecting Your Pouch

After a urostomy, urine drains into a disposable pouch. The pouch sticks to the skin around the stoma. An adhesive skin barrier holds the pouch in place. This barrier also protects the skin and prevents leakage. Most pouches are made of lightweight, odourproof plastic and lie flat against the body.

Types of Pouches
There are many styles of pouch. Your ET nurse or other health care provider will help you select the one that's best for you. No matter what style of pouch you choose, the adhesive skin barrier has to fit around the stoma without touching it. The barrier must stick well to prevent leakage or odour from the pouch.

One-piece drainable pouch
The adhesive skin barrier and pouch come as one piece. The barrier holds the pouch onto the skin. Urine is emptied from the bottom of the pouch through a drain. The drain can be opened and tightly closed. Drain styles differ, depending on the pouch selected.

Two-piece drainable pouch
The adhesive skin barrier and pouch do not come as one piece. The skin barrier adheres to the skin. The pouch snaps on to the skin barrier. Urine is emptied from the bottom of the pouch through a drain. The drain can be opened and tightly closed. Drain styles differ, depending on the pouch selected.

Sizing the Opening
For the pouch to work well, the opening of the adhesive skin barrier must be the right size. Some openings are precut, while others must be measured and cut. Weight gain or loss may change the size of your stoma. If this occurs, check the size of your stoma using a measuring guide. Most pouches come with a guide in the box. Your health care provider may give you one. To get the right sized opening, try these tips:

Find the smallest hole on the guide that fits around the stoma without touching it.
To cut the opening yourself, centre the guide hole on the back of the adhesive skin barrier. Trace the pattern. Then cut the opening using curved scissors.
For pre-cut openings, order pouches with sized openings that match the size of the hole on the measuring guide.

Accessories
You can buy other stoma care products through special catalogues, at medical supply stores and at some drugstores.

Skin barrier wipes (sealants) and stoma powders help remove moisture form the skin. They also help protect irritated skin.
Stoma paste and adhesive skin barrier wafers fill in uneven places in the skin around the stoma. This helps the pouch stick better.
Convex adhesive skin barriers help make a better seal. They are used if the skin around the stoma is uneven. These barriers also help if the stoma is level with or sinks below the skin.
Ostomy belts help keep the pouch in place.
Pouch covers help keep the skin under the pouch dry and comfortable.
A night drainage system lets you sleep all night without emptying your pouch. This system can also help prevent urine from pooling around the stoma, which can lead to infection.

Caring for Your Stoma

To care for your stoma and the skin around it (peristomal skin), you need to keep them clean. You must also protect the skin around the stoma from moisture and urine. Taking these steps can help prevent skin problems and odour.

Check the Stoma
Check your stoma and the skin around it each time you change your pouch. Stand in front of the mirror or use a hand mirror so that you can see the entire stoma. The stoma should look shiny, moist and pink or red. The skin around it should be smooth, with no red or broken spots.

Clean the Stoma
When you change your pouch, be sure to clean the stoma and the skin around it. Do this using warm water and a soft washcloth. Water does not harm the stoma.
Clean and dry the stoma gently. Because the stoma has no sensory nerves, you could injure it without feeling any pain.
The stoma may bleed a little when you clean it. That's because it has tiny blood vessels. To stop the bleeding quickly, apply gentle pressure to the stoma using a dry cloth or tissue.
Know that urine will keep flowing out as you clean your stoma. You can use a folded paper towel or piece of gauze to absorb the urine.

Protect the Skin Around the Stoma
For the pouch to stick well, the skin around the stoma needs to be dry and smooth. If the skin is moist or uneven, the pouch is more likely to leak. Any urine that leaks out of the pouch can pool on your skin. Urine that leaks from the pouch can also cause odour or be absorbed by your clothes. You can help prevent these problems by following these steps:

Be sure that your skin is dry before applying the adhesive skin barrier. This helps keep the skin healthy. Always pat your skin dry after washing it. Or, try drying your skin with a hair dryer that's set on "cool".
Try applying a skin barrier wipe before you put on a new pouch. This helps protect the skin if urine leaks around the pouch. A skin barrier wipe may shorten or lengthen the amount of time you can wear some pouches. Before using a wipe, check the product information enclosed with your pouch.

Call your ET nurse or other health care provider if:

The skin around the stoma is red, weepy, bleeding or broken.
The skin around the stoma itches, burns, stings or has white spots.
The stoma swells, changes colour or bleeds without stopping.
The stoma sinks below its normal level or below the skin.
The stoma sticks up above the skin more than normal.

Managing Skin Problems

Taking good care of the skin around the stoma will help prevent skin problems. If a problem does occur, you need to know what to do. Listed below are some of the most common skin problems and steps you can take to manage them. If any of these problems lasts more than a week, call your ET nurse or other health care provider.

Common Skin Problems
A leaking pouch can make the skin red and weepy. This may be caused by a pouch with an opening that is too big or too small. Use a measuring guide to check that the opening on the pouch is the correct size.
Allergies to skin barriers can make the skin itch, burn or sting. You may need to try a new skin barrier or change to a new kind of pouch.
Yeast infections can make the skin red and itchy. These infections are more likely to occur if there's sweat under the pouch. A pouch cover can help keep the skin beyond the skin barrier dry. You may need to ask your ET nurse or other health care provider about using antifungal products.
Urine pooling on the skin can make the skin look waterlogged. To prevent this, make sure your pouch fits well. Dry your skin thoroughly before you put on a new pouch.
Hair under the pouch can make the skin inflamed. To avoid this, shave off any hair around the stoma with an electric razor. Always shave away from the stoma.
Urine can crystallise, forming patches of dried urine on the stoma. To prevent this, put a washcloth soaked in equal parts vinegar and water on your stoma for a few minutes. Do this each time you change your pouch.

Emptying Your Pouch

Empty your pouch when it gets to be about one-third full. The pouch is likely to become this full every 2 to 3 hours. Emptying your pouch routinely keeps the pouch from bulging under your clothes. It also helps prevent leakage and odour. To empty your pouch, follow the steps below.

1. Empty the Pouch
Sit on the toilet or stand in front of the toilet. Put a layer of toilet paper in the toilet bowl to keep urine from splashing.
Pull your clothes away from the pouch.
Hold the pouch drain over the toilet bowl.
Open the pouch drain so that urine flows into the toilet.
Empty all the urine and mucus from the pouch. While holding the pouch with one hand, slide the fingers of your other hand down the pouch. This will help empty any mucus from the pouch.

2. Close the Pouch Drain
Once you've emptied the pouch, use a piece of toilet paper to dry the tip of the drain. This will keep any urine or mucus from getting on your clothes.
Put the pouch drain in the "closed" position. This may prevent leaking and odour.
Wash your hands after emptying the pouch.

Changing Your Pouch

Urine and mucus start to pass for the stoma soon after surgery. You will be shown how to change your pouch before you leave the hospital. Plan to replace your pouch every few days. Change it early in the morning, when your urine output is less. To change your pouch, follow the steps below.

1. Prepare the New Pouch
Gather your supplies in the bathroom. These include plastic bags, toilet tissue, paper towels or a soft washcloth, a clean cloth towel, an extra skin barrier wipe and a new pouch.
If you don't use a pouch with a precut skin barrier, size and cut the opening now.
Slowly peel the backing off the adhesive skin barrier. Set the skin barrier aside.
Empty the used pouch before removing it. When you empty the pouch, be sure to sit on the toilet or stand in front of the toilet.

2. Remove the Used Pouch
When removing the used pouch, sit on the toilet or stand in front of the toilet.
Carefully push the skin away from the adhesive skin barrier with one hand. Do this starting at the upper edge of the barrier. With the other hand, slowly peel off the skin barrier from top to bottom.
Seal the used pouch in a plastic bag. Then throw it away in a trash bin.

3. Clean Around the Stoma
Use toilet paper to wipe urine or mucus from the stoma or from the skin around it.
Clean the skin with warm water and a soft washcloth or paper towel. Wash right up to the edge of the stoma. You can also do this when you shower.
Pat the skin dry with a clean towel.

4. Put on the New Pouch
Use a folded paper towel or piece of gauze to keep your stoma dry while you're putting on the new pouch.
Using one hand, pull the skin on your abdomen tight to smooth out any wrinkles. Place the barrier over the stoma.
Starting from the bottom of your stoma, apply the adhesive skin barrier. Put the palm of your hand over the barrier. Hold the barrier in place for 45 seconds. This moulds it to your skin.
If you use a two-piece pouch, snap the pouch onto the adhesive skin barrier. Start at the bottom and work your fingers around the barrier.
Make sure the pouch drain is in the "closed" position. If the pouch has a drain cap, be sure to close it.
After you change the pouch, wash your hands.

Call your ET nurse or other health care provider if:

The skin around the stoma is red, weepy, bleeding or broken.
The skin around the stoma itches, burns, stings or has white spots.
The stoma swells, changes colour or bleeds without stopping.
The stoma sinks below its normal level or below the skin.
The stoma sticks up above the skin more than normal.

Using a Night Drainage System

A night drainage system can be attached to the pouch before you go to bed. This system then collects and stores urine. That way, you can sleep all night without getting up to empty the pouch. It may take some time for you to get used to the night drainage system. But before long, you're likely to find that it helps you get a more restful night's sleep.

Parts of a Night Drainage System
The parts of night drainage system are shown below. Some people use a catheter drainage bag to collect and store urine overnight. Talk with your ET nurse or other health care provider about what will work best for you.

Setting Up the Night Drainage System
There are several types of night drainage system. Whatever type you choose, you need to set up the system before connecting it to the pouch. The tubing and the container can come as one piece. But they can also come as two pieces. If they do, put one end of the tubing into the lid of the container. Keep them connected until the container must be replaced. Each night, connect the other end of the tubing to your pouch. You may also need an adapter to do this. Most pouches come with such adapters. If you use an adapter, place it on the tubing. Keep the adapter connected until the container must be replaced. Replace the container when it starts to look cloudy or changes colour.

At Night
The pouch should be about one-fourth full when you attach the drainage system to it at night. This will help urine flow into the tubing from the pouch
To attach the system to your pouch:

Place the night drainage container in a basin on the floor next to your bed.
Connect the tubing to the pouch.
Open the closure on the pouch drain. This way, urine can flow through the tubing.
Use a leg strap to keep the tubing next to your thigh. This will help prevent the tubing or pouch from twisting.

In the Morning
To detach the night drainage system from the pouch each morning:

Return the pouch drain to the "closed" position to prevent leakage.
Remove the lid from the night drainage container (but keep the tubing in place).
Empty the night drainage container's contents into the toilet.
Rinse out the tubing and container with cool water in the bathroom sink or tub.

Cleaning the System
Clean the night drainage system every 2 to 3 days. Follow these steps:

Set white vinegar, a measuring cup and a funnel next to the bathroom sink or tub.
Pour a quarter cup vinegar through the tubing into the night drainage container.
Pour 2 cups cool water through the tubing into the container.
Let the container sit for at least 1 hour. Then, empty its contents into the toilet.
Rinse out the container with cool water.
Let the container air-dry.

Maintaining Your Health

Staying healthy after an urostomy doesn't mean adopting a whole new lifestyle. But know that certain foods may cause urine odour. Drink plenty of water. This can help keep your urinary tract working well.   Bathing right is good for your stoma and the skin around it. Visiting your health care provider as advised can help you stay healthy.

A Few Words on Diet
You don't have to follow a special diet after your urostomy. There's also no need to avoid any foods. Know that asparagus and some other foods may cause your urine to smell.

Drinking Plenty of Water
Drink at least 8 glasses of water a day, unless your doctor has advised you to drink less fluid. Drinking plenty of water will help prevent urine odour and dehydration (when too much fluid is lost from the body). If you become dehydrated, less urine will flow from your stoma. You may feel thirsty and tired. And your skin and mucous membranes may get dry. You may also get stomach cramps. If you do get dehydrated, drink plenty of fluids, including water or sports drinks. Call your health care provider if you can't keep fluids down because of nausea or vomiting.

Taking a Shower or Bath
You can take a shower or bath with or without your pouch. If you bathe without your pouch, you may want to do this in the morning. This is when your urine output is less. At other times of the day, showering is a better option than bathing. That way, any urine that flows from your stoma will run down the drain.

When You Have a Checkup
After an urostomy, you may at first need to visit your health care provider every few months. After that, your stoma should be checked once a year. Any time your health care provider needs a urine sample, he or she should take it from your stoma. This will be done with a special catheter. Do not take a urine sample from your pouch. When you visit your health care provider, bring extra supplies in case you need to change your pouch. Always let your health care provider know right away about any problems with your urinary tract or stoma.

If you have symptoms of a urinary tract infection
Call your ET nurse or other health care provider if you have any of the following symptoms of a urinary tract infection:

Fever or chills
Kidney pain
Blood in your urine
Cloudy or foul-smelling urine for more than a week

Adjusting to Your Body

Adjusting to an urostomy takes time. Once you learn how to care for your urostomy, the next step is accepting your new self. Keep in mind that no one needs to know about your urostomy unless you choose to tell someone. Having an urostomy shouldn't keep you from enjoying sex.

Accepting Yourself
It's normal to be anxious about a change in your body. At first, you may not want to look at your stoma or change your pouch. An ET nurse or other health care provider will show you what to do. You may want someone to help, too.
With time, you'll adjust. Caring for your urostomy will become part of your daily routine, like bathing or brushing your teeth.
Talking with another person who has an urostomy can help, too. Support group members will be glad to answer questions and talk with you about your concerns.

Telling Others
No one can tell by looking at you or talking to you that you have an urostomy. With a good fit and proper care, your pouch won't bulge or smell. Keep in mind that:

Deciding to tell someone is your choice.
If you're dating, you may worry about how to tell someone you have a urostomy. It's best to wait until you feel at ease with the person. But talk about it before you decide to have sex.

Sexual Intimacy
Having sex again may be hard to deal with right now. You may be afraid that you'll be rejected or that you won't be able to relax. But your urostomy should not affect you sex life. Your ET nurse or other health care provider can help you get over any fears you may have. Keeping these tips in mind can help, too.

Give yourself time. Wait until you feel well and relaxed. Try to talk about your feelings with your partner. And remember that you can express love in many ways, such as hugging, kissing and caressing.
Empty your pouch before you have sex. You may also want to wear a pouch cover or a shirt over the pouch. Or, you might tuck the pouch under a soft belt or inside underwear with an open crotch.
Do not put anything in the stoma during sex.

In some cases, the problem that led to your urostomy may cause sexual problems. If this applies to you, talk with your ET nurse or other health care provider.

For Loved Ones
A person with an urostomy hasn't changed. But he or she needs time to adjust. Your loved one may be depressed or withdrawn at first. Keep in mind that you're not the cause. Tell your loved one that you care for him or her. Your loved one may also want help caring for the urostomy at first. An ET nurse or other health care provider can help you learn what to do. If you're afraid or have questions, you can attend support group meetings.

Leading an Active Life

Having an urostomy doesn't prevent you from living an active life. In most cases, you can gain greater control over your urinary problem. You will also have more freedom to be active without worry. And you can move on with your life.

Work
You can return to work as soon as your surgeon says it's OK. Having an urostomy isn't a disability. With an urostomy, you can do all kinds of work. It doesn't matter if you have to sit or stand on the job, work outdoors or indoors, or be physically active or not. In fact, some athletes and movie stars have urostomies.

If your work involves heavy labour, such as lifting or digging, talk with your health care provider. You may need to wear a special support to prevent a hernia.
If you move a lot in your work, you may want to use an ostomy belt to help keep your pouch in place.

Leisure
You can most likely return to your normal lifestyle soon after surgery. An urostomy won't keep you from most sports and hobbies. Being active is a good way to relieve stress and stay healthy. It can help you feel better about yourself, too.

Ease into your activity slowly. Regaining your strength will take some time.
You may lift weights or do contact sports, such as football or karate. But talk to your ET nurse or other health care provider first. You may need to wear a special support or a cover to protect your stoma.

Swimming
Water will not hurt your stoma. You can go swimming. Pouches don't show under most kind of swimwear. Try these tips:

Women may prefer to wear one-piece swimsuits with patterns or skirts.
Men may prefer boxer-type trunks.
If you wear an ostomy belt, have an extra one just for swimming. That way, you'll have a dry ostomy belt to put on when you get dressed after swimming.
To avoid loosening the adhesive on your skin barrier, don't sit in a hot tub for more than 10 minutes.

Clothing
Today's low-profile pouches lie flat against the body. So you can wear most types of clothing. Just make sure that belts and waistbands don't rub the stoma. Avoid wearing clothes so tight that they could injure the stoma. If you wear a corset for support, talk to your ET nurse or other health care provider. The corset will need to be adjusted to have an opening for your pouch.

Travel
With an urostomy, you can most likely travel anywhere. But you'll need to take all your supplies with you. Try these tips:

If you fly, pack your supplies in your carry-on bag. If your other luggage gets lost, you'll still have your supplies.
Take more supplies than you need. Be sure to pack your night drainage system.
If you drive, keep your supplies in a cooler in the car so they don't get hot and melt.
Fasten your seat belt high or low, so it doesn't rub your stoma.

Answers to Common Questions
You probably have many questions. Your ET nurse or other health care provider can help answer them. Learning as much as you can about your urostomy will help you adjust faster. Here are answers to some common questions.

Q: Do I need to eat special foods?
A: No special diet is required for people with urostomies. But know that certain foods, such as asparagus, may cause urine odour.

Q: Do I need to carry supplies with me when I go out during the day?
A: Yes. The chance of your pouch leaking or of other problems occurring is small. But it's good to have on hand a new pouch and any supplies you may need to change your pouch.

Q: How can I know whether a product will irritate my skin?
A: If you have had skin allergies before, you may want to "patch test" a product. Put a small piece on your belly, away from the stoma. Remove it after 48 hours. If the skin isn't red or sore under the patch, the product most likely won't irritate your skin.

Q: Can I take my regular medications?
A: Yes, unless you're told not to by your ET nurse or other health care provider.

Q: Where do I buy pouches and skin care products?
A: Urostomy supplies can be bought through medical supply companies, some drugstores and special catalogues. Your ET nurse or other health care provider can give you a list of suppliers. Be sure you know the makers and product numbers of the supplies you use. And order new supplies well before you run out.

Words to Know

As you learn about your urostomy, you'll hear words that may be new to you. Here are some of the words you'll need to know:

Bladder: The organ that stores urine before it passes from the body.
Colon: The large intestine. It absorbs water from digested food.
ET (Enterostomal Therapy) Nurse: A nurse who has advanced training and practice in how to care for patients with ostomies. An ET nurse teaches patients self-care and how to select and use urostomy products.
Ileum: The last section of the small intestine. The ileum connects to the colon on the lower right side of the abdomen (lower belly).
Kidneys: A pair of organs that filter unneeded substances and extra water from your blood, creating urine.
Mucus: A thick, slippery fluid produced by the body.
Night Drainage System: A plastic bottle, adapter and tubing that allow urine to be collected and stored overnight while you sleep.
Ostomate: A person who has an ostomy. Someone who has had an urostomy may be called a urostomate.
Ostomy: Surgery to create an opening in the body. With an urostomy, the ileum, colon or ureters are brought through an opening in the abdomen to make a stoma.
Skin Barrier: A paste or wipe that protects the skin around the stoma from contact with urine. Common kinds of skin barriers are pectin-based and liquid sealants.
Small Intestine: The part of the digestive tract between the stomach and the colon. The small intestine absorbs nutrients from the body.
Ureters: Two long, slender tubes that allow urine to flow from the kidneys to the bladder.
Urinary Diversion: One of a few types of surgery that can be done to form a passage allowing urine to leave the body.
Urologist: A doctor who manages the care of people with urinary tract problems. In most cases, the urologist performs the urostomy surgery.

Getting Support

Adjusting to an urostomy takes time. But your family and friends can help you. Your surgeon, ET nurse and other health care providers are there to answer your questions, too. And they can help you find a support group. This is a group of people who share similar concerns or problems.