Health Society of South Africa

LIVING WITH YOUR ILEOSTOMY
A guide to self-care

A New Beginning

Have you just had an ileostomy? 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 ileostomy, you'll most likely find that you can do all the things you did before. In fact, you may be able to do many more things.

What is an Ileostomy?
An ileostomy is a type of surgery. The large intestine and sometimes part of the last section of the small intestine are removed or disconnected. If they were diseased, they may be removed. If they were injured, they may be disconnected for a short time while they heal. 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
An ileostomy 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 ileostomy 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 again.

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 ileostomy and teach you how to care for it. They can also help you to adjust to the changes in your body.

Your surgeon will answer questions about your ileostomy.
An ET (enterostomal therapy) nurse or other health care provider will show you how to care for yourself.
Other people who have had an ileostomy can help you, too.

Understanding Your Ileostomy

The ileum is the last section of the small intestine. It connects to the colon, or large intestine. With an ileostomy, the colon is removed or disconnected. The end of the ileum 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 small intestine is a tube about 6 metres long in the middle of this system. The inside is lined with a protective coating of mucus. The small intestine absorbs nutrients from the food you eat. Once digested food enters the colon, only waste and water remain.

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.
The ileum is the last section of the small intestine.
Digested food passes from the ileum into the colon as liquid waste.
The colon absorbs water and minerals, such as salt, from the waste and forms it into solid stool.
The rectum stores stool until a bowel movement occurs.
The anus is the opening through which stool passes.

An End Ileostomy
The most common type of ileostomy is the end ileostomy.

The colon and sometimes part of the ileum are removed or disconnected. The rectum and anus may be removed or just disconnected.
The stoma is most often on the lower right side of the abdomen.
Stool tends to be quite liquid. That's because there is no colon to absorb water from the stool. The stool also contains digestive juices, so it's very irritating to the skin.
An end ileostomy is most often permanent. It may be done to treat inflammatory bowel disease (IBD) or polyps (growths) in the intestine.
Sometimes an end ileostomy is temporary. It may be done to let the colon heal, as after an injury.

There are other types of ileostomies. These can be temporary or permanent.

The Stoma
The stoma is created by bringing the end of the ileum through the abdominal wall and turning it back on itself, like a cuff.

The inside of the ileum is like the inside of the mouth, so the stoma is pink and moist.
The stoma shrinks to its final size 6 - 8 weeks after surgery. Then it will be round or oval and sit about 6 to 12 mm above the skin.
Both stool and mucus pass through the stoma. If the anus is not removed, some mucus may pass from the anus as well.

Selecting Your Pouch

After an ileostomy, stool is 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 Pouch
There are many styles of pouch. 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.

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.

Two-piece drainable pouch
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.

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 and digestive juices leak.
Adhesive paste and skin barrier wafers fill in uneven places in the skin around the stoma. This helps the pouch to stick better.
Convex skin barriers help to 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 to prevent odour.
Ostomy belts help to keep the pouch in place.
Pouch covers help to keep the skin under the pouch dry and comfortable.

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 to 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 to 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

Your pouch need to be emptied 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 though 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.
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.

Avoiding Digestive Problems

You don't have to eat a special diet just because you've had an ileostomy. 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 make your stool more watery than normal and foods that cause gas and odour. You also need plenty of fluids and vitamins.

Choosing Foods
Learning which foods cause gas or odour or makes your stool too watery 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.

Preventing Fluid Loss
The small intestine doesn't absorb as much water as the colon. That means that your body loses fluids and can become dehydrated more quickly. To prevent this, drink at least 8 - 12 cups (2 - 3 litres) of fluids, such as water or juice, each day.

Taking Supplements and Medications
When the large intestine is removed or disconnected, some vitamins and medications cannot be absorbed.

Your health care provider may prescribe vitamin supplements or have you eat more of some foods, like bananas.
Time-release capsules and coated pills aren't absorbed in the small intestine. Be sure that all your health care providers know you have an ileostomy before they prescribe any medications.

Causes of Diarrhoea
Stool that's more watery than normal (diarrhoea) can be a sign of an illness, such as the flu. Some foods and medications can also cause more watery stool.

If your stool is more watery 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, milk, beer and iced drinks.
Check with your health care provider before you take any medications for diarrhoea.

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.
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.
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.

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).

If You Have a Food Blockage

After an ileostomy, it may be harder to digest foods that are high in fibre, such as raw vegetables, popcorn and nuts. Eaten in large amounts, these foods can clump together. Then they get stuck in the small intestine, causing a blockage. You need to know the signs of a blockage and what to do if you have one.

Signs of a Blockage
A blockage can be an emergency. That's because you can become dehydrated quickly. The intestine can also rupture. You'll most likely never have a blockage but you need to know the signs just in case you do.
At first, you may have an almost constant spurting of very watery stool. Your intestine is taking water from your body to try to get rid of the blockage.
You may feel bloated or have cramping. The stool may have a strong odour. The stoma or the skin around the stoma may swell.
If the blockage remains, the flow of stool will stop totally. Then you'll have increased pain, often leading to nausea and vomiting.

What to Do
At the first sign of a blockage:
Do not eat any solid food.
Do not take any laxatives or stool softeners. They cause your body to lose more water.

You can also try one or more of the following:
Put on a pouch with a larger opening.
Gently massage your abdomen with the palms of your hands.
Lie on your back. Pull your knees to your chest and rock from side to side.
Take a hot bath for 15 - 20 minutes.

If blockage lasts more than 2 - 3 hours, or if you start to vomit:
Call your doctor or ET nurse right away. Or go to the nearest hospital emergency room.

Ways to Help Prevent a Blockage
Sometimes a blockage occurs no matter what you do. But you can help to prevent a blockage.

Drink at least 8 - 12 cups (2 -3 litres) of fluids, such as water or juice, each day.
Chew your food slowly and thoroughly.
Eat only small amounts of foods that are high in fibre or cellulose. These include raw vegetables, unpeeled fresh fruits, bamboo shoots, bean sprouts, cabbage, celery, coconut, corn, mushrooms, pea pods, dried fruits, nuts, seeds, popcorn, hot dogs and other meats in casings.
Go easy on bran and other high-fibre grains, such as granola.

Adjusting to Your Body

Adjusting to an ileostomy takes time. Once you learn how to care for your ileostomy, the next step is accepting your new self. Keep in mind that no-one needs to know about your ileostomy unless you choose to tell. And having an ileostomy 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 ileostomy will become part of your daily routine - like bathing or brushing your teeth.
Talking with another person who has had an ileostomy can help and will be glad to answer questions and talk with you about any concerns you have.

Telling Others
No one can tell by looking at you or talking to you that you have an ileostomy. 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 ileostomy. 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 ileostomies date, marry and have children. 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 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 ileostomy 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 ileostomy at first. An ET nurse or other health care provider can help you learn what to do.

Leading an Active Life

Having an ileostomy doesn't prevent you from living an active life. If you had a chronic bowel disease, you can most likely do more now than you could before. In most cases, it's your choice not to let your ileostomy limit your life.

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

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. An ileostomy 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 get 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 an ileostomy, 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 carryon 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.

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 ileostomy will help you to adjust faster. Here are answers to some common questions.

Q: Can I take my regular medications when I have an ileostomy?
A: In most cases, yes. However, some medications are absorbed in the colon. An ileostomy 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: Ileostomy 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: f 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 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 ileostomy, 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 stool that's more watery than normal, swelling around the stoma, cramping, pain, vomiting, and finally, no stool at all.
Colon: The large intestine. The colon absorbs water from digested food.
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.
Ileum: The last section of the small intestine. The ileum connects to the colon on the lower right side of the abdomen.
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 an ileostomy.
Ostomy: Surgery to create an opening in the body. With an ileostomy, the ileum 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 barriers are karaya, pectin-based and extended-wear.
Small intestine: The part of the digestive tract between the stomach and the colon. The small intestine absorbs nutrients from food.
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 an ileostomy 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.