ILEOSTOMY

A GUIDE

adapted and revised from an earlier text by

Linda Gross, M.A., ET

INTRODUCTION

Now that you have, or will have an Ileostomy, you should know that you will not necessarily have to change

to a new way of life, merely a new way of fecal evacuation. Adjusting to the change in your bowel function

may seem difficult and frustrating at first. Body changes often cause feelings of shock, loneliness, fear,

guilt, resentment, and discouragement. Many ostomates have some of these feelings, and you are no

different from the thousands of others who have undergone this lifesaving surgery. You will be able to

adjust to the ileostomy as you learn the necessary techniques.

An unfamiliar topic

If ileostomy surgery is a new and unfamiliar topic, you probably have many questions you would like to

have answered. As you read this booklet, realize there are additional publications available on this

subject. Contact national UOA, or search our Internet site, or go to the library for further information.

Read the following pages carefully. You will find a glossary at the back of this booklet to help you with

the technical terms that appear.

You may be worried about adjusting to the changes in your body function and the way you look. You

may feel as if you are the only person in the world who has to live with this new way of managing intestinal

drainage. Actually, there are hundreds of thousands of people like you, working, living, and enjoying life

just as they did before illness and surgery.

An individual matter

There is no one way to take care of an ileostomy. Just as ileostomies differ, so does how to take care

of them. This booklet gives you suggestions and ideas for managing your ileostomy. Use the booklet as a

guide rather than a textbook. Discuss the ideas with a physician or an enterostomal therapy nurse (ET),

and adapt them to your situation. Give new things a fair trial, but do not insist on them if they fail to make

you more comfortable. What is good for someone else may not be good for you. The sooner you learn to

take care of your ileostomy, the better. Use the weeks of recovery for learning and trying different things.

In our society, bathroom needs are kept private. This is the same for a person with an ileostomy.

While you learn the new procedures, you may need help. Before long, however, you will again be in control. Having a good sense of humor and using common sense are indispensable ingredients, when

changes in body function occur. Be confident, you can do it.

Preparing for ileostomy surgery

Some people have been ill for a long time before ileostomy surgery, and are able to prepare themselves

emotionally before their operation. Others may not have the opportunity to prepare themselves before

emergency surgery. They do not have time to face the prospect of having their operation, or talk with

someone about how they feel.

Whichever description fits your situation, there are many ways you can better understand your future

life with an ileostomy. This booklet will give you helpful facts about living with an ileostomy. Your

physician and ET nurse or other health care professionals are also important sources of information

and support.

A special source of assistance with your adjustment is an ostomy visitor. The visitor is a person who,

like you has had ileostomy surgery. He/she may answer many of your questions about day-to-day life.

Your ostomy visitor has successfully adapted to the changes which ostomy surgery makes, and may help

you see how you may adjust.

You may also be helped by taking part in an ostomy support group. A support group allows you to share

your feelings, and ask questions as you make progress with your adjustment. It also allows you to share

your successful adjustment with others who may need the benefit of your own experience.

Most ostomy visitor programs and support groups are sponsored by local chapters of the United

Ostomy Association (UOA). If you would like to see a visitor or take part in a support group, ask your

physician, your ET or call UOA for a chapter near you at 1-800-826-0826. You may check their

Internet site at www.uoa.org. You or your family may also locate the local UOA chapter by checking your

telephone directory, by asking local health-related referral services, or by asking local ostomy supply

retailers.

FACTS ABOUT ILEOSTOMIES

An Ileostomy is an opening in the abdominal wall through which body waste is passed. The very end of the

ileum, the last section of the small intestine, is brought through the abdominal wall to form a stoma,

usually on the lower right side of the abdomen. When you look at your stoma, you are actually looking

at the inner lining, or the mucosa of the intestine, which is like the lining of your cheek. It is warm, moist

and pink. Normally, the colon and rectum are removed, and normal colon and rectum functions are no

longer present. There are temporary procedures that may leave some or all of these parts in tact for

future reconnection. Much of this is dependent on the medical reason for the ileostomy, the health of

the individual, and the quality of life one wants after surgery.

The digestive system before ileostomy surgery

A description of the large and small intestine may help you understand the changes in your body. The

digestive system begins with the mouth and ends with the anus. The small intestine, which is connected to

the stomach, is about 20 feet long and is loosely coiled in the abdominal region. It may remind you of a

garden hose. Known as the small intestine because it is smaller in diameter than the large intestine, it

consists of three parts, the duodenum (about one foot long), jejunum (about five or six feet long), and the

ileum (about 12-14 feet long). The large intestine is about five or six feet long, and is connected to the end of the small intestine, the ileum. Men generally have slightly longer intestines than woman.

The reason for ileostomy surgery

An ileostomy is usually performed when a diseased or injured colon cannot be successfully treated

with medicine. The most frequent reason is inflammatory bowel disease of the colon. The two most

common types of inflammatory bowel disease are Crohn's disease, sometimes called ileitis in Great

Britain, and ulcerative colitis. Ileostomies are also done because of birth defects, familial polyposis,

injury, or cancer. Occasionally, a temporary ileostomy is performed in order to protect and rest the

colon or small intestine, beyond the stoma, while that section is healing.

How the ileostomy changes digestive function

You may wonder how it is possible for you to live without your colon (large intestine). The major

functions of the colon and rectum are storing intestinal contents, absorbing water, and carrying waste to

the outside. Although these functions are necessary for you to live, they can be taken over by the

small bowel.

The major function of the small intestine is to absorb the body's nutrients and water. Enzymes

released into the small intestine break food into small particles so that vitally needed proteins,

carbohydrates, fats, vitamins, and minerals may be absorbed. These enzymes will also be present in

ileostomy discharge; they will act on the skin the same way they work on foods. This is why the skin

around an ileostomy must always be protected.

When the colon is present, the food you eat eventually reaches the large intestine where it is stored

and more water is absorbed. Many hours or perhaps days later, the mass is expelled through the anus

in a formed stool. Peristalsis, muscle contractions of the intestines, pushes the contents toward the

rectum. When the stool reaches the rectum, the need to empty the large intestine occurs and nerve

pathways from the brain initiate the process of defecation.

After removal of the colon and rectum, you no longer have this need or control. Unlike the anus,

the stoma has no shutoff muscle. Digestive contents pass out of the body through the stoma, and are

collected in an individually fitted pouch, which is worn at all times. Because the small intestine does

not store and make intestinal contents solid, your stool will never get thicker than toothpaste. However,

the soft stool in your ileostomy prosthetic should not be confused with loose stool and diarrhea.

LIVING WITH AN ILEOSTOMY

Learning to live with an ileostomy may seem like a big undertaking. It is similar to other big changes

in your life. Beginning a new job, moving to another city, adjusting to wearing glasses, marriage, and

having children are all examples of adapting to a new way of life. Initially, you have to adjust to the

unfamiliar aspects of these experiences, and this may take some time. A positive outlook on life,

patience, and a sense of humor are keys to adjusting to any new situation.

Telling others about this surgery

You might be worried about how others will accept you when they learn that you wear a prosthetic.

It is natural to wonder how you will explain your surgery to others. Your friends and relatives will want

to visit you. They may ask you questions about your operation. You may tell them as much as you want

them to know. You need not feel you have to explain your surgery to everyone who asks. Those who are

curious need to only know that you had abdominal surgery, or that you had part/all of your colon removed.

As your strength returns, you may go back to your regular activities. When you return to your job, you

may or may not wish to confide in your boss or a good friend. However, you may want to tell them you

have an ileostomy. Keeping it a complete secret may present unnecessarily difficult issues you can

easily avoid if key people know about your surgery.

Being open about your ileostomy will help educate others. Your example of normal living will

demonstrate that it is neither as hard nor as unpleasant to live with an ileostomy as many imagine.

If you have children, answer their questions simply and truthfully. A simple explanation will be enough

for them. Once you have explained what an ileostomy is all about, they may ask questions about it. They

may even want to see your stoma or the appliance. Talking about your surgery and showing your stoma

in a natural way, will dispel any misconceptions they may have. They will accept your ileostomy much the

same way as you accept it.

If you are considering marriage, a thorough discussion with your future spouse about life with an

ileostomy and its effect on sex, children and family acceptance are in order. Frank discussions with a

trusted physician and going to UOA chapter meetings together will be encouraging. Talking to other

couples, in which one partner has an ileostomy, may clarify misconceptions.

Clothing and appearance

Whatever you wore before surgery, you may wear afterwards with very few exceptions. Most

appliances that are made today are not bulky. Some are even sporty, and do not show under even the

most stylish, tightest apparel for men and women.

If you were ill before surgery, you may find you now can begin to eat normally for the first time in

years. As your appetite returns in the months after surgery, you probably will gain a lot of weight. This

will affect the clothes you choose more than the prosthetic itself. Keep in mind, it is harder to be

properly fitted for an appliance if you are overweight. Be careful you don’t gain too much weight.

Girdles are not necessary for the ostomy, but most women who use them prefer the lightweight stretch

type. A girdle that does not stretch may cause pooling of the drainage around the stoma. This will make

the seal loosen and the pouch leak. An old girdle, or one that is a size too large, may be more comfortable

at first. It is not necessary to cut a hole in the girdle for the pouch; when the appliance is worn inside the

girdle, it will have support and will be less noticeable. A little air around the stoma in the pouch will often

prevent discomfort from a tight girdle and provide space for drainage. Also, cotton knit or stretch

underpants may give the support and security you need. Some women find a maternity garter belt suits

them best in the first weeks after surgery. Panty hose are also comfortable.

Men car wear a girdle designed especially for them. Jockey type shorts or a wide belted athletic

supporter with the crotch cut off are also appropriate.

Working after surgery

Ileostomates can do most jobs. However, heavy lifting may cause a stoma to herniate or prolapse.

Make sure you allow your abdomen enough time to heal properly. Start all physical activities very

slowly at first. You may even want to see an athletic trainer experienced in building tightness and

strength in muscles. Some have overexerted themselves too soon after surgery resulting in additional

medical treatment to repair the damage. A sudden blow in the appliance area may cause the face plate

to shift and cut the stoma. Regardless, there are ileostomates who do heavy lifting. These include

firemen, mechanics, truck drivers, construction workers, mothers with children and policemen. There

are athletes, both professional and amateur, who have stomas. Make sure you check with your doctor

about your type of work, and what you need to do to prepare for it. As with all major surgery, it will

take time for you to regain strength after your operation. A letter from your doctor to your employer

may be helpful should the employer have doubts about what you can do.

Although it is rare, a person with an ileostomy sometimes finds that their employer still thinks the

ileostomy will keep him/her from doing his/her job. This also happens to some ileostomates who are

applying for a new job. If you are sure you can do a job, as well or better than others, in all respects, you

should know your right to work is protected by parts of the U.S. Rehabilitation Act of 1973; the Americans

with Disabilities Act of 1990; sections of your state and provincial laws. If you feel your are being

unjustly treated by an employer because of your ileostomy, you may want to seek a legal resource. They

can work with you on protecting your rights, and seeking a legal remedy.

Participating in sports

An ileostomy should not limit your participation in sports. Many physicians do not allow contact sports

because of possible injury to the stoma from a severe blow. But, you should know that if you want to play

these sports, there is special equipment that will protect the stoma from harm. Weight lifting may result

in a hernia around the stoma. You must be very careful after surgery with any activity that will put a strain on your abdominal muscles. After time, with the advise of your health care professionals, after slowly

building your strength, you'll have the ability to do most activities as well as you were able to do them

before surgery. Isometric abdominal exercises are the best. They build strength and also tightness

between muscles. These exercises do prevent hernias from forming. Check with your doctor. He/she

knows your circumstances, and other health issues that may required special attention. There are

ileostomates who are distance runners, weight lifters, skiers, swimmers, professional golfers, bowlers,

professional football players, baseball players, basketball players, volleyball players, and participants

in most other types of athletics.

Bathing and swimming

Bathe to your heart's content with or without your appliance. If you wish to take a shower or bath with

your prosthetic removed, do so. Normal exposure to air or contact with soap and water will not harm the

stoma, and water does not enter the ostomy opening. If you are concerned about ileal contents dripping

into the bath or shower, you may want to choose a time for bathing when the bowel is less active. You

may also leave your appliance on while bathing. Remember these pointers:

· If you use a belt to support your appliance, choose an old one you may hang up to dry.

· If you are using a water-soluble skin barrier, it should not be exposed to water. Protect it by

taping the edge of the appliance with waterproof or paper tape.

· Be careful in heavy surf or when diving from the side of a pool. The force of the water may loosen

or rip off the appliance.

When swimming in a pool, make sure you empty your pouch thoroughly beforehand. If you eat, only

eat lightly. Many women find girdles sold especially for swimwear helpful in giving the pouch support

and providing a smooth silhouette. Men may use girdles sold in men's underwear departments or an

athletic support with a wide belt.

Continuing your social life

Your social life may be as active as it was before surgery. You can enjoy all activities: e.g. meeting

people, attending concerts, sporting events, civic and social club meetings, parties, religious events, and

whatever you enjoyed before. The first time you go out of the house after surgery, you may feel as if

everyone is staring at your appliance even though it is not visible under your clothing. You may feel

your prosthetic at times, but it may be quite impossible for most people to actually see it on you. Keep

these things in mind:

· Did you know what an ileostomy was before you had surgery?

· Did you know where an ileostomy was located?

· Did you look at peoples abdomen's for any tiny sign of a prosthetic?

· Did you know what an ileostomy looked like?

You may also worry about your pouch filling with gas and sticking out under your clothing. A relaxed trip to the restroom will take care of this problem. Are you worried about your pouch filling up immediately

after eating at a social event? Remember, people without ileostomies usually to go the toilet after

eating. Nobody will think it unusual if you do the same. You will find you need to empty your pouch less

often than you need to urinate. There is the added plus of never having the urgent need to run to the

toilet for a bowel movement. Special situations do challenge us at times, and we need to be flexible to

meet these as they occur. But practically speaking, you'll have fewer emergencies than other people.

Friendship and love

You may be wondering about your relationships with others. Now that you have an ileostomy, you may

feel that it will change your present relationships, and decrease new opportunities for friendship and love.

True friendships and deep relationships on any level are built on trust and mutual understanding. These

qualities depend on you and the other person. You have the same qualities you had before surgery, and

your ability to develop friendships is unchanged. If you care about yourself, others will feel your strength

and will not be deterred. You ostomy may cause a break in a friendship, a sexual alliance, or even a

marriage. There were probably other issues involved, and the relationship was not built upon trust and

mutual respect. It probably would have crumbled sometime in the future anyway.

We do not want to seem like there are easy answers to these issues. You may encounter prejudice,

resentment, exclusion etc., and blame these on the surgery. These same things happen to everyone,

except they do not have an ileostomy to blame.

Expect everyone to forget you even had surgery. After a few years, everyone who sees you happy and

healthy will not even remember you have an ileostomy. You'll look so good everyone will want to be like you. It will just amaze you, if you have a positive attitude, and meet each problem like an exciting new

challenge to overcome, how well you live.

The effect on sex life

Your sexual potency and sex appeal will be a major concern after ileostomy surgery. Sexual function

in women is rarely impaired by an ileostomy. Sexual potency of men may sometimes be affected, although

these issues are usually temporary. Discuss this most important issue with your surgeon before surgery.

He/she can reduced the probability of permanent potency issues to a minimum. One of the advantages

of a permanent ileostomy as compared to the new continent procedures are the small risks of sexual side

effects. Continent procedures have sexual impotency as a side effect in a much higher percentage of

patients than a Brooke ileostomy.

You may feel mutilated, or that your body is no longer appealing because of the stoma on your belly.

Good sexual adjustment after surgery depends on sexual adjustment before surgery. A warm and

sharing relationship is not easily destroyed. True feelings of affection and love are not lost because of

an ileostomy. Those in current relationships have partners very grateful they are still with them. Those

without partners who want them, will find them. Could it be a difficult challenge? Of course it can.

Finding a partner is a very difficult situation for the rich and beautiful. Having an ileostomy does not

eliminate social challenges, it just presents a new set to conquer.

The possibility of childbearing

Pregnancy in women who have had ileostomy surgery is not uncommon. Before pregnancy is

considered, it must be discussed with your doctor. The ileostomy itself is not a reason to avoid pregnancy.

You will find that during pregnancy you have several advantages over your stoma-less sisters; you will not

be bothered by two common ailments: constipation and hemorrhoids. If you are healthy, the risk during

childbirth appears to be no greater than for other mothers. Of course, other health problems that you may

have must be taken into consideration and discussed with your physician.

Traveling with an ostomy

All methods of travel are open to you. Many people with ileostomies travel widely. They go on

camping trips, cruises, trains, boats and planes all around the world. Since you should prepare for

travel, here are some general suggestions from which most people will benefit:

· Take along enough supplies to last the entire trip times three. They may mot be easy to obtain

where you are going. Even if you don't expect to change your appliance, take along everything

you need to do so. Leave home fully prepared. Find out if and where supplies are available on

every trip you take. A phone directory is a wonderful source in every city in the U.S. Every

country has their own system of obtaining supplies. It just takes a little effort beforehand to give

you that peace of mind when on that trip.

· Take along a recent issue of the Ostomy Quarterly. It lists some suppliers with national

distribution. The Internet is also an excellent source for support and assistance around the world.

A copy of the Chapter Directory may be requested from the national UOA office. The local

chapters always know a good source for supplies and ostomy assistance. Many ostomy retailers

are able to air express emergency supplies to you within 24 hours.

· You can work out a way to change your appliance anywhere you travel. You can change in a

public washroom, in a plane, in the woods, in a hotel room, at a friends house or just about

any place you can imagine. Most people now use disposable supplies. Have a plastic bag with

you in case you need to change. You can put the used appliance in the plastic bag and conveniently

dispose of it without fear of odor or leakage.

· Seat belts will not harm the stoma when adjusted comfortably. You may place a clothes pin near the

retraction slot to relieve tension on the belt. Stoma shields are available to guard the stoma.

These are the same as athletes wear. As a doctor once said," I'd much rather repair an injury to a

stoma caused by wearing a seatbelt than to try and repair a broken body of someone who did not

wear one."

· When traveling by auto, keep your supplies in the coolest part. Avoid the trunk or back window

ledge. You do not want your supplies to get too warm. The adhesive barriers will melt and be

ruined by excessive heat.

· When traveling by plane, train, boat or bus realize that checked luggage sometimes gets lost.

When you travel, always carry an extra appliance or two or three, and other needed supplies

with you. Be sure your adhesive remover is non-flammable to avoid violation of laws

regarding carry-on items. Small cosmetic bags with plastic linings or shaving kits work well.

These should be carried in your carry-on luggage.

· Before traveling abroad, get a copy of the current directory of English-speaking physicians in

various foreign cities who charge a standard fee. The International Association for Medical

Assistance to Travelers, 417 Center Street, Lewiston, NY 14092,716-754-4883, publishes

lists of English-speaking physicians in over 1,400 cities around the world. The IAMAT is a

non-profit association and its service is free.

· To avoid problems when going through customs or luggage inspection, a note from your doctor

stating that you need to carry ostomy supplies and medications by hand, may be helpful. You

may want something like, "Medically Necessary Ostomy Supplies". By having this information

translated into the language of the country you are visiting, further problems might be

avoided. The note could be written in several languages, on one piece of paper, and carried

with your passport. Or, you get a copy of Barbara Keefers book, Yes We Can. This source

contains important information. It would be very prudent for you to carry a copy of this book

anywhere you travel. It has resources from around the world.

· In foreign countries, traveler's diarrhea is a common disease of tourists, whether you are an

ostomate or not. The most common cause of diarrhea is contaminated water or food. It may

also be caused by mere changes in water, food or climate. Ileostomates lose water and minerals

quickly when they have diarrhea. For this reason, you may need medication to stop the fluid

and electrolyte loss. Your physician can give you a prescription for medication to control diarrhea

and rebuild stamina. It should be filled in your home state, since the prescription may not be

valid elsewhere. Be sure drinking water is safe. If the water is not safe, do not use the ice either.

bottled water or boiled water are recommended. Also avoid unpeeled fruits and raw vegetables.

Finally, don't let any of these suggestions stop you from traveling. All travelers must plan carefully and

be careful about food and drink. So travel to your heart's content, and join the many thousands of

ileostomates who travel extensively in the United States and around the world.

Eating and digestion

There is no such thing as an ileostomy diet. An ileostomy is not a sickness. There is usually no

health reason for not eating the foods you ate in the past. If you have a special diet because of heart

disease, diabetes, or other health problems, you should ask your doctor about a diet that will work with

both that problem and your ileostomy.

You may wonder if you will be on a limited diet after surgery. Here are a few simple guidelines

about your diet:

· Doctors have their patients follow a low-residue diet the first weeks after any abdominal surgery.

This includes only foods that are easily digested and excludes raw fruits and vegetables. Be sure

to find out when you may start a regular diet. Eat all foods that you like except those restricted

by your physician.

· Try one food a day that you have not eaten since surgery. Eat small portions at first, then

gradually increase the amount. Chew very well. If a small serving gives you cramps, diarrhea,

or odor, eliminate that food from your diet temporarily and try it again in a few weeks. If it still

bothers you, try it again in a few months. Remember, you must chew all your food into small

pieces. With hard foods, such as nuts, salads, vegetables etc., the way it goes down is the

exact way it will come out. In addition, some foods tend to clump. These may be eaten in

smaller quantities with plenty of liquids with no problem. Eat a can of nuts, and your asking

for trouble.

· Eat a well-balanced diet. You need proteins, fats, carbohydrates, vitamins and minerals, just as

you did before your illness. Your diet should include dairy products, vegetables and fruits, meats

fish, or legumes high in protein; cereals, bread, and liquids every day.

· Watch for foods that cause watery discharges with cramps or partial obstruction of the small

bowel. Some foods may tend to clump together to form a mass difficult to digest or expel. If

this occurs, the ileostomy may squeeze out the water and retain the pulp. Nuts, kernel corn,

popcorn, coconut, Chinese vegetables, coleslaw, and raw celery are among the trouble makers

if eaten in large quantity. Many ileostomates find that these foods may be tolerated in small

amounts if chewed well and eaten in combination with other foods. Experimenting is the only

way to find out for sure.

· Eat regularly. Skipping meals to avoid gas or discharge is unwise because your small intestine

will be more active, and more gas and watery discharge might result. Some people find it best

to eat a smaller amount of food four or five times a day.

· Drink plenty of liquids. A minimum of one to two quarts a day is recommended. Liquids are

defined for our purpose as non-alcoholic and non-caffeine drinks like clear fruit juices, teas,

broths and most importantly, water. Dehydration and loss of electrolytes are possible if not

enough fluids are consumed in a day.

· Foods which are difficult to digest such as whole corn, peas, Chinese foods, skins, seeds, raw fruits

and vegetables, popcorn, nuts, high fiber foods etc., will appear in the pouch undigested. Even if

you chew these well, they will come out the same size they went in. Medication in for form of

coated tablets or time-release capsules may also come out whole in the pouch. They will be of no

benefit at all. Beets and tomato juice will make ileostomy output turn a reddish color rather like

blood, but there is no harm done. Food dyes may change the usual color of the ileal discharge to

the color of the dye. This is normal.

· Depending on your own personal chemistry, milk, beer, iced beverages, alcoholic drinks may cause

a watery discharge. This is usually temporary, and does not warrant avoiding these drinks in

moderation. Ileostomates are more sensitive to large quantities of food and drink at one time.

Use common sense. Don't overeat. Don't drink to excess. Use moderation and your body will

reward you with good health.

How long is it before intestinal contents flow through the stoma after eating?

This varies with each individual. It may take anywhere from 20 minutes to several hours after eating.

Some ileostomates find their movements occur regularly after eating; others find their movements are

irregular. What you eat or drink, your mood, and your health may affect how long it takes, as does the

length of the remaining ileum and many other personal characteristics of your digestive system.

Feeling discouraged

After surgery, there may be times when you feel discouraged and blue, alone and isolated, and unable

to enjoy life again. This is normal. Don't be upset. There are many reasons for these reactions, e.g. serious illness, medications, lengthy hospitalization, and the surgery itself. Those withdrawing from long-

term prednisone use may go through a difficult adjustment period, because of the bodies dependency on

this drug. All these may cause feelings of fear, insecurity, dependence, and discouragement.

Having to accept the ileostomy and learning to manage it causes other reactions. Because the whole

experience is so new to you, you may feel awkward, frustrated and uncertain. You may lack confidence

in yourself. You self esteem has been jolted; you are sensitive about what people say and do; you

wonder if you will ever be your same old self again. You may think that no one understands how you

feel. This might be a good time to ask for an ostomy visitor. In fact, the best thing might be going to

a local UOA chapter meeting. You can meet other people who have gone through ostomy surgery.

Feeling discouraged is real, natural and exhausting. If you did not have these feelings, you would be

superhuman. The only way to get rid of these feelings is to face them and release them. You might cry,

be hostile or angry, or react in ways that are unusual for you. Talking to a trusted friend, a relative,

a nurse, a clergyman, and another person with an ileostomy will help you discover new hope and

encouragement to return to life and living.

PARENTS OF CHILDEN

WITH ILEOSTOMIES

If you are a parent of a child with an ileostomy, you probably have many questions and concern. When

the surgeon said your child needed this surgery, your first reaction may have been, "Is this the only

choice?" Your doctor no doubt assured you that the ileostomy was necessary to save your child's life. You

may have felt shock. You may have asked yourself, " Why did this happen to us?"

Talking to a good friend, your doctor, clergyman, ET or the parents of another ileostomate helps.

Make sure you visit your local chapter of the United Ostomy Association. They can refer you to other

parents. This will prepare you to help your child adjust to his/her ileostomy. You may need to face these

feelings yourself before you can give your child the emotional support he/she needs.

Possibly you have some guilt and feel responsible for your child's illness and surgery. All of us dream

of the best things in life for our sons and daughters, including good health. You may think that your child

will not be able to do the things others do. Most parents worry about their child's life span, ability to work,

adjustment to living with an ileostomy, and in later years, marriage and family. These are normal

concerns of all parents facing major changes in their child's life.

As your child begins to recover from ileostomy surgery, there are many ways you can be a source of

strength and support:

· When your child is in the hospital, be there as often as possible. Being in the hospital and having

surgery are frightening at any age. Although you do not want your child to become less

independent, at this time he/she is especially vulnerable, and needs to feel wanted and reassured

about your love. Your child needs someone to talk to. Your being there makes him/her feel safe.

· You need to be prepared for how you will feel seeing an opening on your child's tummy with

bowel contents running into a prosthetic. There is no reason to show disgust or repulsion

which would only make the unhappiness and anxiety worse. Your child will think that everyone

will react to the surgery the way you react. Therefore, your first reaction is vitally important,

and must be as positive and relaxed and casual as possible. This is an area you may need to

talk about with other parents, you need to work together so that you both approach your child

in the same manner.

Your son or daughter will naturally use you as a sounding board. They may be afraid that

young friends and relatives will not want to be around them. Your acceptance is needed.

Encourage your son or daughter to talk to you about these feelings. If you are open and

natural about the ileostomy, he/she will be also.

· Take an interest in your child's care and management. If he/she is old enough, you will want to

encourage independence in taking care of toilet needs just as before surgery. Your child may

require some help and support at first, due to insecurity about the new equipment, physical

weakness and easily tiring. A very young child can be taught to empty the pouch. An older

child can get equipment together and learn steps of changing the appliance until the whole

process can be done alone. You may want to use a teaching process that begins with your son

or daughter assisting you. Later on, you may just stand by to assist only when it is needed.

A very important person to assist you with care and management of your child is the ET.

This is a person who has received special training in ostomy management. To find an ET,

check with your hospital, or contact the WOCN (Wound, Ostomy, Continence Nurse) Society.

They may be accessed through the Internet at http://www.wocn.org./ .

· Try to understand how your child feels. Your child need to feel that you understand what it is

like to have an ileostomy. However, too much sympathy is not good, and will take away a

sense of independence. Listen, try to understand feelings, encourage and be tactful.

It is difficult not to overprotect and pamper a child who is recovering from major surgery.

because it is so easy to give in to your feeling, be as solid as possible. If your child is not given

the chance to mature as any other youngster, the growth of an independent spirit will be

hampered, and your child may not be able to become a self-sufficient person.

· If you child is very young, the ileostomy will probably be easier for him/her to accept than it is for

you. The child will grow up with it, and it will become a natural part of the self. If performed on

a teenager, who is facing all the problems associated with puberty and adolescence anyway, this

surgery comes at an especially difficult time. The changes in body image caused by the ileostomy

may compound the stresses of adolescence. Your teenager may feel rejected, ugly and different

because of the ileostomy. You may notice temporary changes in behavior patterns. Your

acceptance and support is especially needed now. Even more than you have given in the past.

Try to understand the feelings and listen to the complaints. Provide encouragement to find

realistic solutions to these problems.

· Each summer, the United Ostomy Association sponsors a Youth Rally for ages 12 through 17.

This is a camp for young people with ostomies, alternate procedures and other related

conditions. There are planned educational sessions on self esteem and body image. There is

an ostomy update. In addition, craft projects, tours, sports and rap sessions are offered. For

information contact UOA at http://www.uoa.org./ .

· Be prepared for trial and error in managing, or helping to manage, your child's ileostomy.

There are some changes that will occur in the beginning that will not happen later. There may

be diet adjustments, skin problems, appliance issues, etc. The important thing to remember

is that anything new needs experimentation and adaptation. A sense of humor, and a positive

attitude will be helpful.

· Be prepared for the usual childhood illnesses. If your child has a fever or other symptoms,

don't panic. He/she will have all the aches and pains that other children have. When in doubt,

call you physician, ET or trusted health care professional.

· Be flexible in dealing with your child's adaptation to school and everyday living situations.

If at first, the pouch should happen to leak at school, your child can go to the school nurse.

You might pick up your child for an appliance change, and then bring him/her back. One

youngster tells this story:

He noticed that his pouch was leaking and had stained his trousers. Instead of rushing out

of the class as everyone else did, he calmly waited until everyone had left the room.

In this way, he very wisely avoided embarrassment, and then called home so that his

mother could pick him up.

You should visit the principal, his/her classroom teachers and the school nurse to explain

your child's surgery.

You will find that your child can participate in sports, can go on overnight trips, to camp

and do all activities enjoyed before. At first, it will be difficult to let your child go away on

his/her own. Discuss what may be done if any problems come up while your child is away from

home. Treat the young ileostomate as you treat your other children.

· Practice with your child how to discuss the way ileostomy surgery may be explained to others.

He/she may want to tell close friends, relative and acquaintances. Naturally, people will be

curious. Once the surgery is explained, chances are your child will be accepted as before. If

you discuss it in a natural way with your other children and relatives, he/she will discuss it the

same way. The people who really care will want to know what to expect and how they may help.

Explain the surgery, and how your child may not have much vitality, may be moody, may be

upset at times, and may feel awkward and embarrassed. Encourage those who care to empathize,

not sympathize. A pat on the head and "you poor little thing," is not going to help your child at all.

· Remind your child to be considerate of others. Awareness of odors and cleaning up the bathroom

after ileostomy care are important to maintaining family harmony.

· You and your child are facing a new situation in your lives. If it is confronted with openness,

perseverance, and a sense of humor, you will find that an ileostomy will not stop your son or

daughter from engaging in the everyday activities of living. For many children, the sense of

physical well-being after a prolonged period of illness is an exciting experience. Parents find

that a healthy child with an ileostomy can once again be a happy child.

· Join UOA. If there is a local chapter near you, be sure to attend. You will be able to keep abreast

of the newest prosthetics and medical innovations. You will be able to share experiences with

others. UOA has a special support system in place called Parents of Ostomy Children. UOA is

one of the oldest support groups in the country. Take advantage of this opportunity.

WAYS TO CARE FOR YOUR ILEOSTOMY

AND ITS EQUIPMENT

Learning to care for your ileostomy may seem hard at first, but with practice and your own adaptations,

the entire process will become second nature. It will be just like shaving, washing your hair or taking a

bath.

Choosing an appliance

Many factors may influence selection. The length of the stoma, abdominal firmness and contours,

the location of the ileostomy, scars and folds in the abdominal area, and your height and weight all must

be considered in determining what is best for you. Special adaptations may have to be made for stomas

located near the hipbone, waistline, groin, scars, or other places. Special custom made face plates to fit

unusual situations may be obtained from ostomy supply retailers.

The best appliance for you is a very personal matter. It is important that you are properly fitted,

just as for eyeglasses. When you are selecting your first appliance, it is best to consult someone who

knows how to fit ileostomates with the prosthetic that is most appropriate. An ET nurse may be one of

the best qualified to assist you.

Appliances and equipment

An appliance is a substitute for the lost storage capacity of the colon and the control of the rectum.

It is a receptacle for collecting intestinal waste for disposal. There are two types of appliances, disposable

and reusable.

Disposable appliances

A disposable appliance is a plastic pouch which is thrown out after one wearing. This type is usually

fastened to the body in the operating room, and is worn the first few days or weeks after surgery. Most

disposable appliances are used between one and 14 days, depending on your particular body chemistry,

and your particular preferences. They have an adhesive substance which adheres to the skin on the

tummy. The face plate has a hole for the stoma and protects the skin around the stoma from discharge.

They may be sized or pre-cut. Most have the skin barrier attached. These are the most popular

appliances used by ileostomates. Manufacturers have developed special barriers just for the high

enzyme output an ileostomy will produce. Some are small and sporty. They are comfortable. They

offer reliability and ease of use unknown just a few years ago. They are odor-proof, and go on fast.

Reusable appliances

A reusable appliance is worn over a longer period of time than the disposable appliance. It may be used

over again. It may be worn for one or more day, depending on how well it is affixed, the individual nature

of your stoma, abdomen, and skin and your personal preference. Adhesive products are used to seal the

appliance to your body. Additionally, a belt or tape put around the face plate may be used for added

support.

A reusable appliance is really not permanent because after repeated wearing, it picks up odors, wears

out and must be replaced. This type of appliance is usually fitted several weeks after surgery. The

reusable appliance may consist of a face plate and a pouch permanently attached to the face plate, or

the pouch and face plate may be separate. Most face plates and pouches are made of plastic, although

there are still some made of rubber. How long an appliance lasts depends on its quality, and how well

it is cared for. These were the only option for ileostomates a generation ago. Today, they are used only

for very limited circumstances. Do not consider a permanent appliance without discussing it first with

a ET nurse. Although, there are legitimate reasons for wearing a permanent prosthetic, and ethical

manufacturers producing them, they are not for the vast majority of ileostomates anymore. There are

new disposable pouches that bring ostomy care to a higher level. Enjoy the progress science has made

in ostomy care.

Pouches and pouch closures

Pouches for one and two piece appliances are drained through an opening in the bottom. Pouches are

made from odor-free materials. They vary in cost from one company to another. Pouches are either

transparent or opaque. Pouch covers are available from several manufacturers. Use the manufacturers

closure to close the bottom of the pouch opening. Rubber bands may be used in an emergency, but have

a tendency to allow leaks and break. Use two rubber bands is you must use them.

ALWAYS CARRY A SPARE CLOSURE.

Belts and tape

Wearing a belt is a very individual matter. Some ileostomates wear a belt because it makes them feel

more secure. It gives them support for the appliance. Most find a belt cumbersome. The newer

barriers will stick by themselves, and most have tape attached. The new barriers are very reliable. Some

use both tape and a belt. If you choose to wear a belt, adjust it to avoid a deep groove or cut in the skin

around the stoma. This could result in serious damage to the stoma, and cause pressure ulcers on the

surrounding skin. Belts should be worn so they do not ride above or below the level of the face plate

hooks. A belt which "rides up" will pull the face plate up and injure the stoma. When one is lying down,

such as when sleeping, the belt will slacken and should be tightened to hold the face plate snugly.

However, when getting out of bed the belt should be loosened so that it does not fit too tightly.

Wheelchair patients may need a special belt. Manufacturers carry special belts. You can make one from

belting purchased at a material store. Some use tape to hold the appliance in place.

Some questions and answers

When is the best time to change the appliance?

There may be a decrease in bowel activity at certain times in the day. During these times it will be

easiest to change the appliance. You may still find that when you first get up is best, or at night when you

are getting ready for bed. Some change an hour or more after a meal. After surgery, ileal contents may

be loose, thin, watery and greenish in color. Eventually, they take on the familiar brownish color. As the

discharge thickens, you will be in a better position to determine the best time for changing your appliance.

Why should you have at least two reusable appliance? (If you use these)

If you use reusable appliances, you should have more than two sets of all reusable parts. Thus, one

can be worn while the other is being cleaned. Alternating appliances shortens changing time and

prolongs equipment life.

Where should you keep your equipment?

For the sake of convenience, keep all your equipment together on a shelf, in a drawer, or in a small box

or case. Have a dedicated area you keep these.

What amount of supplies should be on hand?

It is prudent to reorder supplies a month or more before you expect to run out. At the worse possible

time, you may need extras, and not have enough because of a delivery delay. You may be near an

ostomy retailer where you could pick up supplies just like any other medical supply. If you order

through the mail, or the Internet, it usually takes less than a week for normal delivery. You may request

priority delivery at a cost premium if required.

Should supplies be sterile?

You don't have to use sterile supplies. For instance, washcloths or cotton balls may substitute for

gauze pads. The stoma and surrounding skin are not sterile. They only require cleanliness.

What factors influence appliance seal?

In addition to the type of seal and proper appliance fit, there are several other factors which may

influence how long the appliance will stay sealed. These include weather, skin peculiarity, scars,

weight changes, diet, activity, body shape near the stoma, and the nature of the stool:

· Perspiration during the summer months in warm humid climates will shorten the number of days

you can wear the appliance. Body heat, in addition to outside temperature, will cause skin

barriers to loosen more quickly than usual.

· Moist, oily skin may reduce adhesion time.

· Weight changes will also affect appliance wearing time. Weight gained after ileostomy surgery

changes abdominal contours. You may need an entirely different appliance. e.g. One that has

convexity to assure a good seal around the stoma. Weight loss may also have the same effect.

· Diet may influence your appliance seal. Foods which cause watery discharge prevent a long

lasting seal. A thick discharge will usually offer better appliance life.

· Physical activities may have some influence on your appliance wearing time. Swimming, very

strenuous sports, or work which causes perspiration may reduce appliance wearing time.

HELPFUL IDEAS AND PRACTICAL TIPS

Preventing skin problems

Long periods of illness before surgery, as well as high doses of steroids, make one more susceptible to

skin irritation. As you get stronger, and you become better skilled at handling your equipment, skin

irritations will become less of a problem. Here are some ways to prevent skin problems:

· Use the correct size appliance and skin barrier opening.

· Change your prosthetic regularly to avoid leakage and skin irritation. Appliance leakage will

produce itching and burning if it is not changed quickly. Skin irritation will then occur.

· Do not rip off the barrier away from your belly, or remove it to frequently. Remove the face

plate gently by pushing your skin from the appliance rather than pulling it from the skin.

· Keep the skin clean water. Only if necessary, use a very mild soap and rinse very well. Pat dry

before applying the skin barrier or pouch. This may be done in the shower to tub.

· Watch for sensitivities and allergies to adhesive, skin barrier, tape or pouch material. They may

develop weeks, months or even years after use of a product. The body may become gradually

sensitized. If you have a skin irritation which is only under the pouch, you may want to try a

pouch cover. These are available from several manufacturers. You can even make them

yourself. If you feel comfortable testing yourself, we have included some suggestions for you

to follow. Otherwise consult your physician or ET nurse.

Patch testing

Place a small piece of material to be tested on the skin of your abdomen, well away from the ileostomy.

If it is not self-adhering, attach it with an adhesive tape to which you are not allergic. Leave it on for

48 hours.

Gently remove the patch at the end 48 hours, and check for redness or spots under the patch area.

If there is no redness after 48 hours, it is safe to use the product. However, in a few cases, reactions

have been reported that did not occur until after this time period had elapsed.

Itching or burning before 48 hours pass indicates sensitivity. Remove material promptly, and wash skin

thoroughly with soap and water.

A reaction to the tape is also possible. The redness or other irritation will be confined to the area

outlined by the tape.

If it looks as if you are allergic or sensitive to a certain product, try one made by another company

and patch test it. You will probably find one that works for you. Allergies are not as common as is

irritation caused by the faulty use of a product. For this reason, always read the directions that come with

a product. When in doubt, consult with your ET.

Coping with severe skin problems

Large areas of skin irritation which are reddened, very sore and weeping, i.e. always wet, will

prevent a good seal around the stoma. It is therefore important to treat minor irritations when they

first occur. If you have a large irritated area, contact your physician or ET nurse. For deep pressure

ulcers caused by a very tight belt, loosen or remove the belt and call your physician immediately.

Treatment is needed. Also, call your doctor when any of these skin problems arise and your are

diagnosed with Crohn's disease.

Preventing injury to the stoma

Be sure your face plat is not touching the stoma. If its opening is too small, it can injure and cut it.

Swelling of the stoma, cramps, gas, watery discharge and odor will occur. You should not ignore these

cramps, even if they are mild twinges. Swelling may also occur if you have the flu or eat a heavy meal.

The stoma will be changing shapes due to peristalsis. This is normal. Sometimes it will temporarily

appear bigger or smaller. This is different than when it swells due to a problem. In this case, multiple

symptoms will occur. Always have another appliance on hand, one with a larger opening, that can be

used.

Spots of blood on the stoma

Spots of blood are no cause for alarm. Brushing against your stoma as you change the appliance

may cause pinpoint bleeding. The blood vessels in the tissues of the stoma are very delicate at the

surface. They are easily disturbed. The bleeding will stop as easily as it started.

When the stoma changes size

The stoma will shrink in the first few months after surgery, and should be re-measured as needed

during this time. It is normal for the stoma to wiggle and appear to be smaller as ileal contents pass

through it.

Shaving hair under the appliance

Some men with excessive hair find it painful to remove their barriers. Hair roots may also be injured

and cause irritation. Shaving with an electric razor or trimming hairs with scissors is helpful.

A straight-edged or safety razor is not recommended. Using a pectin or adhesive remover to take the

appliance off may reduce hair pulling.

Dealing with gas

After surgery, it may first seem that you have gas almost all the time. All abdominal surgery is

followed by this uncomfortable, embarrassing yet harmless symptom. As the tissue swelling goes

down, gas will occur less often. Certain foods may cause intestinal gas. Some of these are eggs,

cabbage, onions, fish, baked beans, milk, cheese and alcohol. All people swallow air while eating and

talking. This gas goes into the pouch. You may be worried about the response others may have to gassy

noises. You will find that these noises sound louder to you than to others, and it may sound like stomach

rumbling to them. If you are embarrassed by these rumblings when others are nearby, pretend that

nothing has happened. Or, you can say, "Excuse me, my stomach's growling." If you feel as though you

are about to release gas when you are with people, casually fold your arms across your abdomen so that

your forearm rests over your stoma. This will muffle most sounds.

Handling odor

Odor may concern you. Odor may be caused by many things, such as foods, normal bacterial action in

your intestine, illness, different medicines, vitamins, the appliance itself and its contents. Some

ileostomates find they have odors, and some do not. Individual experimentation is the only solution to

this problem. The odor of ileal contents is not the same as that of a normal stool because the bacteria

which cause food breakdown and odor in the colon are not present in the small intestine. Here are some

keys to odor control:

· Use an odor proof pouch.

· In the pouch, place special deodorant liquids or tablets which are commercially available.

· Try oral preparations several times a day to counteract the odor internally. Don't use

them unless your doctor says it's OK. Do not take more than the recommended dosage.

Among those that many ostomates have found effective are chlorophyll tablets, bismuth

subgallate, and bismuth subcarbonate.

· Empty the pouch frequently, and rinse it well. Some use mouthwash or a pouch deodorant

each time they empty.

· Keep the appliance clean by changing as needed.

· Discard a re-useable pouch if it is permeated with odor.

· Eliminate any offending food if odor cannot be contained by other methods.

· Air deodorizers have only limited value. Most merely mask odors.

With the new odor barrier films on the newer barriers and pouches, odor is not the issue it was a

generation ago. In addition, you can usually tell what a person with a colon has done if you follow him/her

after he/she uses a bathroom and has had a bowel movement. Nobody will know after you use it. Ileal

contents do not have the same strong penetrating odor as colon contents. You should always smell sweet.

If you don't, there is a problem with your pouching system.

Explaining diarrhea

Diarrhea has these characteristics:

· The intestine discharges great quantities of watery stool.

· It comes on suddenly, and my be accompanied by cramps.

Diarrhea may be caused by:

· Intestinal flu. Gastroenteritis may be accompanied by fever and vomiting.

· Partial obstruction. Odorous discharge, cramps and watery squirts and noises from the stoma

accompany partial obstruction. It may be caused by food or other factors. You should seek

medical attention if this does not clear in a few hours.

· Antibiotics, penicillin and other prescription medication. Make sure your doctor is familiar with

this issues facing a person with an ileostomy. Some medicine are contra-indicated.

When diarrhea occurs, the intestinal contents pass through the small intestine too quickly for the

absorption of fluid, salts and minerals to take place. In fact, the illness may cause the tissues to pour out

needed fluid, salts and minerals. You must quickly replace these electrolytes to avoid becoming ill from

dehydration and mineral deficiency. On the other hand, loose stool may come from eating certain foods.

It is usually temporary. Raw fruits and vegetables, milk, fruit juices, prune juice, beer, alcohol or strange

drinking water are examples. Loose stool may be caused by emotional stress. Some people with

ileostomies may always have a watery discharge. This is normal for them.

What to do about diarrhea

· Call your physician, and take the medications he prescribes, if any.

· Take alternately every hour:

o One cup of sweetened clear tea, or

o One cup of orange juice, or

o One cup salty broth.

Continue as long as diarrhea persists. There are also glucose drinks available which will help

replace these looses. These include products like Gatorade, sports drinks, Pedialite, etc.

Your grocery store and ostomy retailer may have a variety of these.

When nothing comes out of the ileostomy

There are occasions when the ileostomy does not function for short periods of time. This is normal.

However, if such cessation of flow lasts four to six hours, and is accompanied by cramps and nausea,

the intestine could be obstructed. A doctor must be called. An obstruction or blockage may be partial.

If it is partial some liquid may pass through. You may need to see your doctor or go to the hospital

emergency room immediately. At the first sign of obstruction, remove the appliance. Make sure you are

drinking plenty of water. Blockages will usually pass on their own. If you need to leave your home, wear

an appliance with a slightly larger opening so that the stoma will not be constricted if it swells. As stated

earlier, obstructions may be caused by high residue, high fiber foods; Chinese vegetables; pineapple;

coconut; kernel corn; raw fruits and vegetables; nuts; skins from fruits and vegetables, meat casings;

popcorn; mushrooms; shrimp or lobster; lack of enough water to digest your food. It may also be caused

by internal changes beyond your control.

Constipation

Constipation doesn't occur in the usual sense. An obstruction is quite different from constipation in

those who have functioning colons. Ileostomates do not get constipated. Therefore, never take any

medications to promote intestine activity like Ex-Lax. Serious harm could result.

The need for more water and salt

After ileostomy surgery, you may have a natural desire for more water and salt. This is your body's

way of making up losses of water and salt. Ask your doctor about the amount of liquid and salt you should

take as well as other related questions. This is very important is you have a condition requiring a low-salt

diet. People with colons have salt reabsorbed into their body. Ileostomates loose about a teaspoon of

salt each day. In addition, it is prudent to drink at least one quart of water daily. Two to three quarts of

water is a prudent intake for a new ileostomate. You will avoid many health problems with a high intake of

water.

When you feel the need to move you bowels

This is referred to as the "phantom rectum." It is similar to the "phantom limb" of amputees who

feel as if their removed limb is still there. It is normal for you to feel as if you need to evacuate. This may

occur for years after surgery. If the rectum has not been removed, one may also have this feeling and

will pass mucus when sitting on the toilet. Some who have had their rectum removed say that the feeling

is relieved somewhat by sitting on the toilet, and acting as if an evacuation is taking place.

When part of the small intestine is lost as well as the colon

This happen in some types of inflammation, Crohn's disease, or diseases of the small intestine. The

condition merits special attention because the more small intestine one loses, the greater the loss of its

vital absorptive function.

People with this condition must remain under a physician's supervision. They can live a normal life

but must be careful to maintain adequate nourishment, avoid diarrhea and be within the reach of medical

care. The shorter the small intestine, the more fluid the discharge will be. This may reduce appliance

wearing time because of more rapid undermining of the appliance. One of the new skin barrier made for

ileostomates will increase wearing time.

When to call the doctor

You should call the doctor when you have:

· Cramps lasting more than two or three hours.

· A deep cut in the stoma

· Excessive bleeding from the stoma opening. Moderate blood in the pouch at several emptyings.

· Continuous bleeding at the junction between the stoma and the skin.

· Severe skin irritation or deep ulcers.

· Unusual change in stoma size and appearance.

· Severe watery discharge lasting more than five or six hours.

· Severe odor lasting more than a week.

· Continuous nausea and vomiting.

· Any other unusual occurrence regarding your ileostomy.

Remember, some of these changes may reflect recurrent Crohn's disease, if that is your diagnosis.

What to do if you are hospitalized again

Take your ostomy supplies with you as the hospital may not have your brand or size in supply.

Prepare yourself to do some expert communicating, especially if you go into a hospital where ileostomy

patients are rare, or if you go for a condition not related to your ostomy. Do not submit to any

procedures which you think may be harmful such as taking a laxative, an enema through the stoma or

rectum, or insertion of a rectal thermometer. If you are in doubt about any procedure, ask to talk to

your doctor. Ask to have prohibited procedures listed on your chart.

CONCLUSION

Now that you have read this booklet, it is hoped that what you have learned has calmed some of

your previous fears about having an ileostomy. Although, adjusting to an ileostomy may be challenging,

the time it takes you to make this adjustment will be relatively short. Like many new experiences in

life, adjustment is necessary. After mastering the daily management, you will find life goes on and may

even improve. Remember, having a stoma does not disqualify you from the human race. Fortunately,

whatever life offers, you can participate just as you did before. So be sincere, give it you best try, you

will succeed. Be happy, you have been given a new life.

GOLSSARY

Adhesive. Substance used to attach an ostomy pouch to the body.

Adhesive Remover. Liquid or wipe used to dissolve adhesive so pouches may be removed from the body.

Anastimosis. The surgical formation of a passageway between two normally distant spaces or organs. A

hooking-up of bowel, ureter, artery, vein, etc., after a section is removed.

Appliance. Collecting device for waste eliminated from your ileostomy. Consists of a face plate and a pouch.

Other terms for face plate are disc, body holder, mounting ring, barrier, wafer.

Benign. Not cancerous, not malignant, having a favorable prognosis.

Carcinoma. Cancer, malignant growth.

Colectomy. Removal of all or part of the colon.

Colitis. A variety of diseases relating to inflammation of the large intestine. Ulcerative colitis forms ulcers in the

lining of the colon and rectum. Severe, often bloody, diarrhea is the primary symptom along with a strong urge to

defecate. Happens most commonly to young adults or senior adults. Ileostomy cures this disease.

Colon. Part of the intestine which stores digestive material and absorbs water. Also referred to as the large intestine

or the large bowel.

Congenital. Present or existing at the time of birth, such as a deformity, disease or tendency.

Continent Ileostomy. Surgical variation on an ileostomy which avoids the need for an external appliance.

The surgeon loops part of the ileum back on itself, and constructs from this loop a reservoir inside the abdomen.

In a Kock Pouch or a BCIR (Barrett Continent Intestinal Reserve) a nipple valve is constructed of intussuscepted

ileum. The ostomate inserts a catheter a few times each day to drain feces from reservoir. A J-Pouch connects

the looped constructed reserve directed to the anus thus allowing natural elimination.

Crohn's Disease (Ileitis, Regional Enteritis, Granulomatous disease of the bowel). Inflammatory bowel

disease which penetrates the deep lining of any part of small or large bowel. In selected cases, ileostomy becomes

necessary; Crohn's may flare up after ileostomy surgery.

Defecation. To excrete waste matter from the bowels.

Diverticulitis. Inflammation of the diverticula, little sacs on the colon. My cause abscess, scarring with stricture or

perforation of the colon with peritonitis in severe cases. Some cases are difficult to tell from cancer on x-rays of the

colon.

Diverticulosis. Presence of diverticula. This is very common with one, two or more found in more than half of the

people over 50.

-ectomy. Excision, cutting our, of an organ or part. E.g. appendectomy, removal of the appendix; tonsillectomy,

removal of the tonsils; colectomy, removal of the colon.

Electrolytes. Salts and minerals needed by the body for health.

Enterostomal Therapy Nurse. Also know as an ET nurse. Also know as a WOCN (wound, ostomy, continence

nurse). A person who takes care of and teaches ostomy patients. A special training course for nurses is required

for certification.

Enzyme. Substance formed in animal and plant cells that starts or speeds up specific chemical reactions.

Familial Polyposis (multiple polyps). A rare disease; runs in families. The colon and rectum contain many polyps.

This is different condition from merely the presence of a small number of polyps in the colon. Familial Polyposis

requires regular medical supervision of all members of the family because of serious complications and the certainty

of cancer if the diagnose is left untreated.

Fistula. An abnormal passage between two internal organs, or from an internal organ to the surface of the body.

Gastroenteritis. An inflammation of the stomach and the intestines.

Hernia. The protrusion, bulging, of a loop or knuckle of an organ or tissue through a structure which usually

contains it. An abdominal hernia is the protrusion of an internal organ through the abdominal musculature; this may

occur around stomas.

Ileal Contents. Waste matter from the ileum. Also referred to as intestinal contents, discharge, drainage, body

waste, stool and feces.

Ileostomy. An opening of the ileum in which the end of the small intestine is brought out surgically through an

opening in the abdomen. Intestinal contents are expelled through the body through this opening.

Ileum. The lowest part or end of the small intestine. The first foot of the small intestine is the duodenum, the next five

or six feet is called the jejunum, and the final 13 feet is the ileum.

Inflammatory Bowel Disease. This is a general term for the group of diseases associated with the body's

inability to stop the inflammation response within the intestines. This includes Crohn's disease and ulcerative

colitis.

Malignancy. The condition of being dangerous; a cancerous growth.

Motility. Motion, the ability to move. In digestion, it refers to the speed of movement of food through the

alimentary system.

Obstruction. Blockage of an ileostomy indicated by partial or complete stoppage of ileal flow.

Ostomy. A surgically created opening in the body. Commonly refers to ileostomies, colostomies and urostomies.

Also refer to as a stoma.

Ostomy Visitor. A person with an ostomy who is a member of the United Ostomy Association. He/she will have

special training in talking to people before or after ostomy surgery. The visitor offers support and life experience.

A visitor does not offer medical information.

Peristalsis. The progressive waves of motion which occur without voluntary control to push waste material

through the intestine.

Polyp. A small projection inside of the bowel. It is often mushroom shaped; may be flat. It is usually benign, but

may be malignant.

Prolapse. A falling out in which the stoma becomes longer. The intestine actually starts coming out of the body.

Surgical revision is usually necessary to correct.

Prosthesis. An artificial substitute for a missing body part. E.g. an artificial arm, leg, tooth; it may be for

functional or cosmetic reasons or both.

Rectum. The lowest of final end of the large intestine. The rectum is attached to the anus.

Resection. Surgical removal or excision.

Retraction. The act of drawing back. In reference to an ostomy, the stoma draws back into the body.

E.g. If one gains a lot of weight after surgery, the stoma my retract into the body. A convex appliance may be

necessary to have satisfactory management.

Revision. Construction of a new stoma when the original one does not function satisfactorily.

Skin Barrier. Any one of several substances used to cover the skin around the stoma May be sheets, pastes, etc.

Solvent. Fluid used to remove cement and adhesive residue from the skin or appliance.

Stenosis. A narrowing or tightness of the stoma which may cause obstruction.

Stoma. the end of the ureter or intestine which may be seen coming through the skin. It often protrudes like a

nipple, is bright red in color and is about ½" to 2" in diameter. There are no nerve ending in the stoma, therefore it

is not a source of pain or discomfort.

Stricture. A narrowing of a passageway in the body, e.g. like squeezing a hose. A stricture in the intestine means

food has a hard time passing through.

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