LIVING WITH YOUR COLOSTOMY
A guide to self-care

A New Beginning

Have you just had an colostomy? Or are you about to have one? If so, you may be thinking that life will never be the same. It's true that you'll need to make some changes in your daily routine. But once you learn how to care for your colostomy, you'll most likely find that you can do all the things you did before - like eat out, play sports and travel.

What is an Colostomy?
An  colostomy is a type of surgery. Part of the large intestine is removed or disconnected. If the large intestine was diseased, it may be removed. If it was injured, it may be disconnected for a short time while it heals. Then it is reconnected.  Either way, your body needs a new way to pass stool (waste). That's why a small opening is made on your abdomen.

Adjusting to a Change in Your Body
A colostomy means a change in the way your body works. It's common to feel depressed or anxious at first. Give yourself time to adjust. Before too long, caring for your colostomy will be part of your daily routine - like brushing your teeth or shaving. And you'll most likely be able to eat a normal diet and lead an active life.

Help From Your Health Care Team
You play the biggest role in your recovery. But you're not alone. Your health care providers are there to help you. They will explain your colostomy 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 about your colostomy.
An ET (enterostomal therapy) nurse or other health care provider will show you how to care for yourself.
Other people who have had a colostomy can help you, too.

Understanding Your Colostomy

The colon (large intestine) takes waste that's left after food is digested in the small intestine and forms it into stool. During a colostomy, part of the colon is removed or disconnected. The colon is brought through the abdominal wall. This makes an opening, called a stoma, for stool and mucus to pass out of the body.

The Digestive System
The digestive system starts with the mouth and ends with the anus. The colon is a tube about 150 cm long that lies near the end of the system. Its role is to absorb water and form stool. The colon is lined with mucus to help move the stool through. Muscles in the wall of the colon push the stool into the rectum.

The oesophagus carries food from the mouth to the stomach.
The stomach breaks food down into a liquid mixture.
The small intestine absorbs nutrients from food. What is left is passed on to the colon as liquid waste.
The ascending colon is the first part of the colon. It absorbs water and minerals, such as salt, from the waste.
The transverse colon absorbs more water and salt from the waste and forms it into paste-like stool.
The descending colon absorbs the remaining water and salt from the waste and forms it into solid stool.
The sigmoid colon stores stool and pushes it down to the rectum.
The rectum stores stool until a bowel movement occurs.
The anus is the opening through which stool passes.

Types of Colostomies
The type of colostomy you have depends on what part of the colon is removed or disconnected. The most common types are:

Sigmoid colostomy
The last section of the colon is removed or disconnected. The rectum and anus may be removed, or they may be disconnected and left in the body.
The stoma is usually on the lower left side of the abdomen.
Stool is most often firm.

Descending colostomy
The sigmoid colon and part of the descending colon are removed or disconnected. The rectum and anus may be removed or just disconnected.
The stoma is usually on the left side of the abdomen.
Stool may be almost firm.

Transverse Colostomy

All of the sigmoid and descending colon and part of the transverse colon are removed or disconnected. The rectum and anus may be removed or just disconnected.
The stoma can be in the middle or on the right or left side of the upper abdomen.
Stool varies from paste-like to almost liquid.

The Stoma
The stoma is created by bringing the colon through the abdominal wall and turning it back on itself, like a cuff. The stoma is pink and moist, like the inside of the mouth. It shrinks to its final size 6 -8 weeks after surgery. The kind of stoma you have depends on your surgery.

An end stoma is most often done for a permanent colostomy. Stool and mucus pass from the same opening. If the anus isn't removed, mucus passes from it as well.

A loop stoma is most often done for a temporary colostomy. Stool passes from one side of the stoma. Mucus passes from the other. The anus is most often not removed, so mucus passes from it, too.

Two stomas may be done for a temporary or a permanent colostomy. Stool passes from one stoma. Mucus passes from the other. If the anus is not removed, mucus passes from it, too.

Selecting Your Pouch

After a colostomy, stool is most often collected in a pouch that attaches to your body around the stoma. An adhesive skin barrier holds the pouch in place and keeps stool from leaking onto the skin. Most pouches are made of lightweight, odour-proof plastic. They lie flat against the body so they don't show or make noise.

Types of Pouches

There are many styles of pouches. Your health care provider will help you select the one that's best for you. The skin barrier has to fit around the stoma without touching it. And it must stick well so there is no leaking or odour from the pouch.

Two-piece drainable
The skin barrier and the pouch are separate pieces. The skin barrier is applied to the skin. The pouch snaps onto a flange on the skin barrier.
The bottom of the pouch has a tail with an opening. The tail is folded over and held closed with a clamp.
To empty the pouch, you remove the clamp.

One-piece drainable
The skin barrier and the pouch come as one piece. The skin barrier holds the pouch onto the skin.
The bottom of the pouch has a tail with an opening. The tail is folded over and held closed with a clamp.
To empty the pouch, you remove the clamp.

One-piece closed-end
The skin barrier and the pouch come as one piece. The skin barrier holds the pouch onto the skin.
The bottom of the pouch is sealed, so it cannot be opened and emptied.
You remove the pouch and dispose of it when it is about one-third full.

Sizing The Opening
For the pouch to fit around the stoma, the skin barrier must have an opening. Some skin barriers have pre-cut openings, and some you size and cut yourself. To find the correct size opening for your stoma, use a measuring guide. Most pouches come with a guide in the box. Your health care provider may also give you one.
Find the smallest hole on the guide that fits around the stoma without touching it. There should be about 3 mm between the stoma and the hole in the guide.
To cut the opening yourself, centre the guide hole on the back of the skin barrier. Trace the pattern. Then cut the opening using curved scissors.
For pre-cut openings, order pouches with the size openings that match the size of the hole on the guide.

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

Powders and wipes add an extra layer of skin barrier. This helps protect the skin if stool leaks.
Adhesive paste and skin barrier wafers fill in uneven places in the skin around the stoma. This helps the pouch stick better.
Convex skin barriers help make a better seal when the skin around the stoma is uneven or the stoma is level with or sinks below the skin. Some convex barriers come with a pouch attached. Others are inserts that can be added to any pouch.
Pouch filters and deodorants help prevent odour.
Ostomy belts help keep the pouch in place.
Pouch covers help keep the skin under the pouch dry and comfortable.
Self-adhesive plastic cups can be used instead of a pouch if you irrigate or have regular bowel movements.

Caring For Your Stoma

You need to take care of your stoma and the skin around it (peristomal skin). That means keeping the stoma and the skin clean. It also means protecting the skin from moisture and contact with stool. This helps to 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 a mirror or use a hand mirror so that you can see all the way around the stoma. It should look shiny, moist and dark pink or red. The skin around it should be smooth, with no red or broken spots.

Clean Around the Stoma
Clean around the stoma with warm water and a soft washcloth each time you change the pouch. Water does not harm the stoma.
There are no nerves in the stoma, so there is no feeling. Be sure to clean and dry the stoma gently. You could injure the stoma without knowing it.
The stoma may bleed a little when you clean it. That's because there are tiny blood vessels in the tissue.

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. A leaky pouch will irritate the skin. That's because digestive juices in the stool break down skin just as they break down food. A leaky pouch can also cause odour.

To help keep the skin healthy, pat it dry after you wash it.
If you like, apply an extra skin barrier, such as a wipe, before you put on a new pouch. This helps protect the skin if stool and digestive juices leak around the pouch.

Common Causes of Skin Problems
A leaking pouch can make the skin red and weepy. Use a measuring guide to check that the opening on the pouch is the correct size.
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.
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. Sweat under the pouch makes these infections more likely. A pouch cover can help keep the skin dry.

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 becomes even with or sinks below the skin, or it sticks up more than normal.

Emptying Your Pouch

If you use a drainable pouch, you'll need to empty it whenever it gets to be about one-third full. This keeps the pouch from bulging under your clothes. It also helps to prevent leaking and odour. To empty your pouch, follow these steps.

1.  Empty the Pouch
Sit on or next to the toilet or stand in front of it. Place a layer of toilet paper in the toilet bowl to keep stool from splashing.
Pull your clothes away from the pouch.
Hold the bottom of the pouch up. Remove the clamp and set it aside.
Slowly unroll the tail, or spout, over the toilet.
Slide your fingers down the spout to push out all the stool.

2.  Clean the Pouch
Wipe the inside and outside of the tail with toilet paper. This helps to prevent any odour.
Check both sides of the pouch for tears or holes. If you find any, put on a new pouch.
Rinse the clamp if there is stool on it.
If you want to rinse out the pouch, hold the tail up and pour water through it. Hold the tail closed and shake the pouch gently. Then empty the pouch into the toilet.

3.  Re-clamp the Pouch
Hold the clamp open with the curved side, or hinge, toward your body.
Lay the bar, or "knife," of the clamp flat on the tail of the pouch, about 25 mm from the bottom of the tail.
Fold the tail up over the bar. Make sure the tail lies flat against the bar. Also make sure the whole width of the tail is held within the bar. If it isn't, the pouch may leak or smell.
Hold the tail of the pouch firmly against the bar. Then close the clamp by bringing the hinge up to the bar. Press the two parts together until they lock.

Releasing Gas
Gas can collect in the pouch even if there is no stool. Never puncture the pouch to release gas. If you do, you'll break the odour-proof seal. Stool can also leak if the pouch is punctured. To release gas, follow these steps:
Holds the tail of the pouch up slightly and remove the clamp. Hold the top of the pouch with one hand.
With the other hand, push the gas out by sliding your thumb and index finger from the top to the bottom of the pouch.
Re-clamp the pouch, follow the steps as in 3 above.

Changing Your Pouch

Stool starts to pass from the stoma soon after surgery. At first a nurse will change your pouch. But you'll need to learn how to change it yourself before you go home. A drainable pouch needs to be changed 1 -2 times a week. To change your pouch, follow these steps. Start by gathering what you'll need:

Plastic bags
Toilet paper
Soft washcloth
Clean towel
Extra skin barrier, if desired
New pouch

1.  Remove the Used Pouch
If you used a drainable pouch, empty it first. Set the clamp aside.
Sit on or next to the toilet.
Start at the upper edge of the skin barrier. Carefully push the skin away from the barrier with one hand. Slowly peel back the skin barrier with the other hand.
Peel all the way around the skin barrier until the pouch comes off.
Seal the pouch in a plastic bag. Then put it in a second plastic bag. Throw it away in a trash bin.

2.  Clean Around the Stoma
Wipe any stool off the skin around the stoma with toilet paper.
Clean the skin with warm water and a soft washcloth. Wash right up to the edge of the stoma.
Pat the skin dry with a clean towel.
Put on an extra skin barrier, such as paste, if desired.

3.  Put on the New Pouch
If you don't use a pouch with a pre-cut skin barrier, size and cut the opening.
Slowly peel the backing off the barrier and carefully place it over the stoma.
If you use a two-piece pouch, snap the pouch onto the barrier. Start at the bottom and work your fingers around the flange.
Press the barrier against the skin with your fingertips. Lay the palm of your hand over the barrier and hold it in place for 45 seconds. This moulds the barrier to your skin.
If you use a drainable pouch, clamp the tail of the 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 becomes even with or sinks below the skin, or it sticks up more than normal.

Irrigating a Colostomy

If you have a sigmoid or descending colostomy, you may be able to time your bowel movements. You do this by flushing, or irrigating, the colostomy with warm water. If your doctor or ET nurse says you can irrigate, follow these steps. Start by gathering what you need:

Irrigation kit (bag, tubing, sleeve and cone)
Hook
Water-soluble lubricant
Stoma cap or small pouch

1.  Fill the Bag
Close the clamp on the tubing attached to the irrigation bag.
Fill the bag with about 1 litre (4 cups) of warm - not hot - water.
Hang the bag on a hook above the toilet. The bottom of the bag should be about even with your shoulders when you sit.
Hold the tubing over the toilet. Open the clamp slightly to release any air in the tubing. Once water starts to come out, close the clamp.

2.  Put on the Sleeve
Remove the cap or pouch from your stoma. Clean the skin around the stoma with warm water and a soft washcloth. Then dry it well.
Sit next to the toilet.
Place the round opening in the sleeve around the stoma. Press on the adhesive if the sleeve is self-adhering. Or attach the mounting ring and fasten the belt.
Place the open end of the sleeve over the toilet.

3.  Insert the Cone
Attach the cone to the tubing on the irrigation bag. Then rub a little lubricant on the tip of the cone.
Slip your hand through the opening at the top of the sleeve and put the cone into the stoma.
Hold the cone in place and slowly open the clamp on the tubing. Allow the water to flow gently into the stoma. This should take 5 - 10 minutes.
Then close the clamp on the tubing.

4.  Remove the Cone and Clamp the Sleeve
Wait about 1 minute. Then remove the cone and seal the top of the sleeve.
Allow stool and water to flow through the sleeve into the toilet for 15 - 20 minutes. Then you can clamp the bottom of the sleeve and get up if you want to.
When stool and water stop flowing into the sleeve, remove the sleeve. Empty the sleeve into the toilet.
Clean and dry the skin around the stoma. Then cover the stoma with a cap or small pouch.

5.  Clean the Cone and the Sleeve
Rinse the cone and sleeve with water.
If you wish, mix 1 part white vinegar with 3 parts warm water. Pour it into the sleeve. Hold the sleeve closed and shake it until the sides are clean. Then rinse with water.
Hang the sleeve to air-dry.

Avoiding Digestive Problems

You don't have to eat a special diet just because you've had a colostomy. Most foods, chewed well and eaten slowly, won't give you problems - unless they did before. But you may need to be more aware of foods that cause gas and odour and foods that make your stool too runny or too hard.

Choosing Foods
Learning which foods cause gas or odour or makes your stool too runny or hard,  takes a little time. You may want to add foods back to your diet one at a time.
Eat only small amount at first to see how your body reacts.
If a food causes a problem, wait and try it again in a few weeks. Once your system adjusts, you may find the food doesn't give you trouble anymore.

Causes of Gas and Odour
Some gas is normal, but constant gas is not. Neither is constant odour from stool. What causes gas or odour can differ from person to person.
Gas is often caused by swallowing air. To avoid this, eat slowly. Chew each bite well. Sip fluids, and don't use a straw.
Some foods tend to cause excess gas. If you have excess gas, you may want to go easy on beer, broccoli, Brussels sprouts, cabbage, cauliflower, corn, cucumbers, dried beans, milk, mushrooms, nuts, onions, peas, sodas and spicy food.
Some foods tend to cause odour. If odour is a problem, you may want to eat less asparagus, broccoli, Brussels sprouts, cabbage, cheese, eggs, fish, garlic, horseradish and spices such as coriander, cumin, dill, and fennel.

Causes of Diarrhoea
Stool that's more runny than normal (diarrhoea) can be a sign of an illness, such as the flu. Some foods and medications can also cause runny stool.
If your stool is more runny than normal, drink plenty of fluids. This helps replace lost fluids and prevents dehydration.
Avoid foods that can make the stool loose, such as raw fruits and vegetables, garlic, onions, alcohol, spicy foods and foods that are high in fat and sugar.
Check with your health care provider before you take any medications for diarrhoea.
Do not irrigate while you have diarrhoea.

Preventing Constipation
Your stool can sometimes be too hard (constipation). Hard stool is often caused by not eating enough roughage (fibre) or nor drinking enough fluids. Stress and some medications can also cause hard stool.
If your stool is hard, eat more high-fibre foods, such as fruits, vegetables and whole-grain breads and cereals.
Drink at least 8 - 12 cups (2 -3 litres) of water or juice each day. Fluids can be hot or cold.
Check with your health care provider before using laxatives or stool softeners.

Call You ET Nurse or Other Health Care Provider if:
You have nausea, vomiting, pain, cramping or bloating.
You have a change in your normal bowel habits, such as little or no stool.
Your stool is more watery than normal for more than 5 - 6 hours.
The stoma changes size, or the stool is black (blood in the stool).

Adjusting to Your Body

Adjusting to an colostomy takes time. Once you learn how to care for your colostomy, the next step is accepting your new self. Keep in mind that no-one needs to know about your colostomy unless you choose to tell. And having an colostomy doesn'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 the pouch. An ET nurse or other health care provider will show you what to do. You may want someone to help you, too.

With time, you'll adjust. Caring for your colostomy will become part of your daily routine - like bathing or brushing your teeth.
Talking with another person who has had an colostomy can help by answering questions and talking with you about any concerns you may have.

Telling Others
No one can tell by looking at you or talking to you that you have an colostomy. Your pouch won't bulge or smell if it's put on right.

Deciding to tell someone is your choice.
If you date, you may worry about how to tell someone you have an colostomy. 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 and be yourself. But people with colostomies date, marry and have children. Your ET nurse or other health care provider can help you get over any fears you 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 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.

For Partners and Loved Ones
A person with an colostomy hasn't changed. But he or she needs time to adjust. Your partner may be depressed or withdrawn at first. Keep in mind that you're not the cause. Tell your partner that you care for him or her. Your partner may also want help caring for the colostomy at first. An ET nurse or other health care provider can help you learn what to do.

Leading an Active Life

Having an colostomy doesn't prevent you from living an active life. If you had a chronic disease such as Crohn's disease, you may be able to do more now than you could before. In most cases, it's your choice not to let your colostomy limit your life.

Work
You can return to work as soon as your surgeon says it's OK. Having an colostomy isn't a handicap. People with colostomies do all kinds of work - outdoors and indoors, standing and sitting, physically active and not. Some athletes and movie stars have colostomies.

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 you work, you may want to wear an ostomy belt over the pouch to keep it in place.

Leisure
You can most likely get back to your normal lifestyle soon after surgery. A colostomy won't keep you from most sports and hobbies - such as playing golf, doing aerobics, skiing, dancing or taking a walk. Being active is a good way to relieve stress and stay healthy. It can help you feel better about yourself, too.

Go slowly until you have all your strength back. If you do a contact sport, such as football or karate or lift weights, be sure to talk to your ET nurse or other health care provider. You may need to wear a special support or a cover to protect your stoma.

Bathing and Swimming
Water will not hurt the stoma. You can shower, bathe and go swimming. Pouches don't show under most kinds of swimwear.
Women may prefer to wear one-piece swimsuits with patterns or skirts.
Men may prefer boxer type trunks.
If you like, use a rubber belt to hold the pouch in place. Elastic belts may change size when wet.

Clothing
Today's low-profile pouches lie flat against the body. That means they don't show, even under tight clothing. You can wear knits, belts, stretch pants - anything you like. Women can wear pantyhose, tights and panty girdles. Just make sure that belts and waistbands don't rub over the stoma.

Travel
With a colostomy, you can most likely still travel where you like. But you'll need to take all your supplies with you.

If you fly, pack your supplies in your carry-on luggage.
If you drive, don't put supplies in the trunk or glove compartment. They could get hot and melt.
Fasten your seatbelt above or below the stoma to avoid rubbing.
In other countries, watch what you eat and drink. Avoid ice, tap water and unpeeled fruits and vegetables. Use bottled water to irrigate or boil tap water and let it cool.

Answers to Common Questions

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

Q: Can I take my regular medications when I have a colostomy?
A: In most cases, yes. However, some medications are absorbed in the colon. A colostomy will affect the way they act in the body. Talk to your health care provider about any medications you take.

Q: Where do I buy pouches and skin care products?
A: Colostomy supplies can be bought through medical supply companies, some pharmacies and special catalogues. Be sure you know the maker and product number of the supplies you use. And order new supplies well before you run out.

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 you belly, away from the stoma. Remove it after 48 hours. If the skin isn't red or sore under the patch, the product doesn't irritate your skin.

Q: Why do I still sometimes feel as if I'm going to have a bowel movement through the rectum?
A: This is called "phantom rectum." The feeling is common. It may occur because nerves that were cut during the surgery still send messages to the brain. The feeling may go away when you've healed from the surgery.

Words to Know

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

Blockage: When stool gets stuck in the intestine and cannot pass through the stoma. Signs of a blockage are watery stool, swelling around the stoma, cramping, pain, vomiting, and finally, no stool at all.
Colon: The large intestine. The colon absorbs water from digested food.  It is divided into four sections: the ascending colon, the transverse colon, the descending colon and the sigmoid colon.
Colorectal surgeon: A medical doctor who operates on the intestine. Sometimes called a GI (gastro-intestinal) surgeon.
ET (Enterostomal therapy) nurse: A nurse who has advanced training and practice in how to care for ostomy patients. Teaches them to select and use pouches and skin care products.
Irrigation: A way of emptying stool from the colon, using warm water. Irrigation controls the time bowel movements occur. Can be used instead of a pouch by some people with sigmoid and descending colostomies.
Mucus: A thick fluid produced by the body. Mucus in the intestine helps lubricate the intestines and move stool through.
Ostomate: A person who has a colostomy.
Ostomy: Surgery to create an opening in the body. With a colostomy, the colon is brought through an opening in the abdomen to make a stoma.
Resect: To remove all or part of a diseased or damaged intestine.
Skin barrier: A powder, paste or wafer that protects the skin around the stoma from contact with stool and digestive juices. Common types of skin barrier are karaya, pectin-based and extended-wear.
Stoma: An opening on the abdomen that allows stool to pass from the body.
Stool: Waste left after food is digested.

Getting Support

Adjusting to a colostomy takes time. But know that you're not alone. Your family and friends can help you adjust. Your surgeon and ET nurse or other health care providers are there to answer your questions. They can also help you find local support groups.

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