For the thousands of people who have serious digestive diseases, ileostomy can be the beginning of a new and healthier life. If you have had a chronic (long-term) or even life-threatening disease, after you recover from this surgery you can look forward to feeling much better. You can also look forward to returning to all the activities you enjoyed in the past.

This guide will help you better understand what ileostomy is, why it's needed, how it affects the normal digestive system, and what changes it brings to a person's life. Some of the terms you will hear your health care team use are used here. You will find a list of words (a glossary) in the back to help you with the technical terms. Words in the list will appear in italics when they are first mentioned in this guide.

What is an Ileostomy?

An ileostomy is an opening in the abdominal wall that is made during surgery. The end of the ileum (the lowest part 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 lining (or mucosa) of the intestine, which looks a lot like the lining of your cheek. As part of this surgery, the colon and rectum are often removed (called a colectomy) so that the normal colon and rectum functions are no longer present. Sometimes, only part of the colon and rectum are removed (see the section "How long will I need my ileostomy?").

The stoma will look pink to red and will be moist and shiny. It will shrink over a short period of time after surgery. The shape will be round to oval. Some stomas may stick out a little, while others are flush with the skin.

What does an ileostomy do?

After the colon and rectum are removed or bypassed, digestive contents leave the body through the stoma that is created on the skin of the abdomen (belly). The drainage is collected in a pouch that is attached to the skin around the stoma. The pouch is fitted to you personally. It is drainable and worn at all times. The ileostomy output will be liquid to pasty, depending on what you eat, your medicines, and other factors. Because the output is constant, you will need to empty the pouch 5 to 8 times a day.

The major function of the small intestine is to absorb nutrients and water from what you eat and drink. Enzymes are released into the small intestine to break food into small particles so that proteins, carbohydrates, fats, vitamins, and minerals can be taken into the body. These enzymes are also present in ileostomy discharge and can cause skin breakdown. This is why the skin around your ileostomy stoma must always be protected (see "Protecting the skin around the stoma").

Why have an ileostomy?

An ileostomy lets people enjoy a full range of activities such as traveling, sports, family life, and work, even though they have a stoma and wear a pouch system. People who have ileostomies may continue to enjoy a normal life span.

Ileostomy surgery is done for many different diseases and conditions. Some of the problems that lead to ileostomy surgery are ulcerative colitis, Crohn’s disease, familial polyposis, and cancer.

There is no one way to take care of an ileostomy. This guide gives you suggestions and ideas for managing your ileostomy. Discuss these ideas with a doctor or an ostomy nurse (a nurse who specializes in wound, ostomy, and continence issues), then adapt them to your situation. Give new things a fair trial, but do not insist on them if they do not 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 you are likely to feel about yourself. In time, you will gain confidence in your self-care.

How long will I need my ileostomy?

An ileostomy may be long-term or short-term depending on the reason for surgery. In a permanent ileostomy, the entire colon, rectum, and anus are removed or bypassed. With a temporary ileostomy, all or part of the colon is removed, but at least part of the rectum is left intact.

Ileostomy surgery is usually done when the colon has disease or damage that cannot be successfully treated by other methods. The most frequent reason for surgery is inflammatory bowel disease (IBD) which includes Crohn’s disease and ulcerative colitis. Ileostomies are also done because of birth defects, familial polyposis, injury, or cancer.

Sometimes a temporary ileostomy is made to protect and rest the colon or small intestine while it is healing. This can also be done as the first stage in forming an ileal anal reservoir (called a J-pouch).

The normal digestive system

An ileostomy creates an important physical change for a patient, but it does not really change the body’s chemistry and digestive functions. A description of the large and small intestine may help you understand the changes to your body.

Small Intestine: About 20 feet long, it is made up of 3 sections:

• duodenum (first part), 10 to 12 inches beginning at the outlet of the stomach 
• jejunum (second part), about 8 to 9 feet 
• ileum (third part), about 12 feet, connected to the large intestine at the cecum

Food nutrients are digested and absorbed in the small intestine as food is moved through by peristalsis. (Peristalsis is the wavelike movement of intestine muscles that moves food along the digestive tract.)

Large Intestine: About 5 to 6 feet long, it is made up of several sections:

• Cecum – contains the ileocecal valve which keeps food from backing up into the ileum; the contents are highly acidic liquid 
• Ascending colon – the contents are acidic liquid 
• Transverse colon – the contents are less acidic liquid 
• Descending/sigmoid colon – the contents become more formed 
• Rectum – holds formed stool

The main jobs of the large intestine are absorbing water and electrolytes, moving stool by peristalsis, and storing digestive waste until it is passed out of the body.

Types of ileostomies

There are 3 major types of ileostomies that may be made when all of the colon is removed. You and your surgeon should talk about your choices and together decide on the best surgery for you. Some of the things to think about when planning an ileostomy are the disease process, age, your general health, and your preference.

Standard or Brooke ileostomy

Reasons for the Surgery:

• Ulcerative colitis 
• Crohn’s disease 
• Familial polyposis 
• Cancer complications

Output: Liquid or paste-like constant drainage that contains digestive enzymes
Management: Skin protection is needed; use an open-end, drainable pouch

The standard ileostomy surgery is done most often. The end of the ileum is pulled through the abdominal wall and is turned back and sutured to the skin, leaving the smooth, rounded, inside-out ileum as the stoma.

The stoma is usually placed in the right lower part of the abdomen and located on a flat surface of normal, smooth skin. The fecal output is not controlled, which means you will need to wear a collection pouch all the time.

Continent ileostomy (abdominal pouch)

Reasons for Surgery:

• Ulcerative colitis 
• Familial polyposis 
• Cancer complications

Output: Liquid or paste-like drainage
Management: Drain fairly often with a small tube (catheter) and use a stoma cover

A continent ileostomy is a different type of standard ileostomy. With this kind of ileostomy patients do not need to wear an external pouch. It is made by looping part of the ileum back on itself so that a reservoir or pocket is formed inside the abdomen. A nipple valve is made from part of the ileum. The patient puts in a catheter a few times each day to drain the reservoir.

Ileo-anal reservoir (J-pouch)

Reasons for Surgery:

• Ulcerative colitis 
• Familial polyposis

Output: Soft, formed stool
Management: Natural bowel movements, but need to protect the skin around the anus

Another option for some patients is the ileo-anal reservoir (pelvic pouch) which is a pouch made from the ileum and placed inside the body in the pelvis. Other names for pelvic pouches include J-pouch and S-pouch depending on the surgical procedure. The pouch is connected to the anus. Waste passes into the pouch, where it is stored. When an "urge" is felt, the stool can be passed through the anus, out of the body. The sphincter muscle around the anal opening must be intact to keep the pouch from leaking. The consistency of the output of the pelvic pouch depends on what you eat and drink, and may be managed with medicines.

Ileostomy management

Learning to care for your ileostomy may seem hard at first, but with practice and time the entire process will become second nature, just like shaving or bathing.

A good pouching system should provide the following:

• security with a good leak proof seal that lasts for 3 to 7 days 
• an odor-resistant pouch 
• skin protection 
• nearly invisible when covered with clothing 
• easy to apply and to remove

Choosing a pouching system

You need to think about many things when trying to find the pouching system that will work best for you. The length of the stoma, abdominal firmness and shape, the location of the stoma, scars and folds in the abdominal area, and your height and weight all must be considered. Special changes may have to be made for stomas located near the hipbone, waistline, groin, or scars. Some companies supply custom-made products to fit unusual situations.

Choosing the best pouching system is a very personal matter. It is important for you to be properly fitted. When you are trying out your first pouching system, it is best to talk with an ostomy nurse or someone who has experience in this area.

Types of pouches

A pouching system is used to collect ileostomy output. There are two main types of systems available:

• one-piece pouches with an attached skin barrier 
• two-piece systems made up of a skin barrier and pouch that can be removed from the barrier

The barrier or base of the pouch may need a hole cut out for the stoma, or it may be sized and pre-cut.

Pouches for one- and two-piece systems are drained through an opening in the bottom. Pouches are made from odor-resistant materials and vary in cost. Pouches are either clear or opaque and come in different lengths.

Pouching systems come with either a pre-cut opening or can be cut to fit the stoma size and shape. After surgery, the stoma may be swollen for about 6 to 8 weeks. During this time the stoma should be measured about once a week. A measuring card may be included in boxes of pouches, or you can make your own template to match your stoma shape. The opening on the skin barrier (or flange) should be no more than 1/8 inch larger than the stoma.

Belts and Tape

Wearing a belt is a personal choice. Some people who have ileostomies wear a belt because it makes them feel more secure and it supports the pouching system. Others find a belt awkward and use tape instead. Tape can be put around the outside edge of the skin barrier in a "picture frame" pattern.

If you choose to wear a belt, adjust it so that you can get two fingers between the belt and your waist. This is done to avoid a deep groove or cut in the skin around the stoma which can cause serious damage to the stoma and pressure ulcers on the nearby skin. Belts should be worn so they do not ride above or below the level of the belt tabs on the pouching system. People in wheelchairs may need a special belt. Supply companies often carry these special belts or you can make one yourself.

Changing the pouching system

There may be less bowel activity at certain times in the day. It will be easiest to change the pouching system during these times. You may find that early morning before you eat or drink is best. Or allow at least 1 hour after a meal, when peristalsis has slowed down. Right after surgery, ileostomy output may be thin and watery. As the output gets thicker, you will be better able to find the best time for changing your system.

Factors that influence the pouching system seal

The length of time a pouch will stay sealed to the skin depends on many things, such as the weather, skin condition, scars, weight changes, diet, activity, body shape near the stoma, and the nature of the ileostomy output.

• Sweating during the summer months in warm humid climates will shorten the number of days you can wear the pouching system. Body heat, added to outside temperature, will cause skin barriers to loosen more quickly than usual. 
• Moist, oily skin may reduce wearing time. 
• Weight changes will also affect how long you can wear a pouch. Weight gained or lost after ileostomy surgery changes abdominal shape. You may need an entirely different system. 
• Diet may affect your seal. Foods that cause watery output may prevent a long lasting seal. 
• Physical activities may have some affect on wearing time. Swimming, very strenuous sports, or work that makes you sweat may shorten wearing time.

Emptying the pouch

Empty the pouch when it is 1/3 full to keep it from bulging and leaking. Follow these steps:

• Sit as far back on the toilet as you can. 
• Place a small strip of toilet paper in the toilet to decrease splashing. 
• Hold the bottom of the pouch up and open the pouch at the tail. 
• Slowly unroll the tail over the toilet. 
• Gently empty the contents. 
• Clean the outside and inside of the pouch tail with toilet paper. 
• Close the pouch at the tail.

Ordering supplies

Keep all your supplies together on a shelf, in a drawer, or in a box in a dry area away from hot or cold temperatures.

Order supplies a few weeks before you expect to run out to allow enough time for delivery. Don't stockpile supplies because they may be ruined by changes in temperatures. Supplies do not need to be sterile. The stoma and surrounding skin are not sterile, but clean.

To order more pouches, skin barriers, and other ostomy products, you will need the manufacturer’s name and product numbers. Supplies may be ordered from a mail order company, from a medical supply store, or from a local pharmacy. For information and help in ordering, you may contact a local ostomy nurse, the product manufacturer, telephone directory business pages, or the Internet (try the search words ostomy supplies).

Helpful hints

Protecting the skin around the stoma

Ileostomy output can irritate the skin around the stoma. This skin area should always look the same as skin anywhere else on your abdomen. Use the following tips to help keep your skin healthy:

• Use the right size pouch and skin barrier opening. An opening that is too small can cut or injure the stoma and may cause it to swell. If the opening is too large, it could possibly irritate the skin. In both cases, change the pouch or skin barrier and replace it with one that is fits well. (See the section, "Measuring for a proper fit.") 
• Itching or burning are signs that the pouching system should be changed. Change the pouch regularly to avoid leakage and skin irritation. 
• Remove the pouch or skin barrier by gently pushing your skin from the pouch or barrier rather than pulling the pouch away from the skin. 
• Clean the skin surface around the stoma with water. Use a mild soap and rinse well. Dry the skin completely before putting on the skin barrier or pouch. 
• Watch for sensitivities and allergies to adhesive, skin barrier, paste, tape, or pouch material. They can develop after weeks, months, or even years of using a product because you can become sensitized over time. You may have to test different products to see how your skin will react to them.

Spots of blood on the stoma

Spots of blood are no cause for alarm. Cleaning around the stoma as you change the pouch or skin barrier may cause slight bleeding. The blood vessels in the tissues of the stoma are very delicate at the surface and are easily disturbed. The bleeding will usually stop as easily as it started.

Shaving hair under the pouch

Having a lot of hair around the stoma area can make it hard to get the skin barrier to stick well and may cause pain when removing it. Shaving with a razor or trimming hair with scissors is helpful. Always use a straight edge or safety razor cautiously. A mild soap or shaving cream may be used. Rinse well.

Flatulence (gas)

Right after surgery it may seem that you have a lot of gas almost all the time. Most abdominal surgery is followed by this uncomfortable, embarrassing, yet harmless symptom. As the tissue swelling goes down, you will have less gas. But certain foods may cause gas, such as eggs, cabbage, onions, fish, beans, milk, cheese, and alcohol.

Eating regularly will help prevent gas. Skipping meals to avoid gas or output is not smart because it will make your small intestine more active and might cause more gas and watery output. Some people find it best to eat a smaller amount of food 4 to 5 times a day.

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 may only sound like stomach rumbling to them. If you are embarrassed by these rumblings when others are nearby 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. Check with your ostomy nurse about products you can take to help lessen gas, such as Beano^®.

Odor

Many factors, such as foods, normal bacterial action in your intestine, illness, different medicines, and vitamins can cause odor. Some people with ileostomies have more trouble with odors than others. Learning by experience is the only solution to this problem. Ileal output does not smell the same as a normal stool. This is because the bacteria that break down food (and cause odor) in the colon are not found in the small intestine. Here are some hints for odor control:

• Use an odor-resistant pouch. 
• Check to see that the skin barrier is securely sealed to the skin. 
• Empty the pouch often. 
• Place special deodorant liquids and/or tablets in the pouch. 
• There are some medicines you can take that may help. Check with your doctor or ostomy nurse about these products and how to use them. Some things that many people have found to help with odor are chlorophyll tablets, Devrom^® (bismuth subgallate), and bismuth subcarbonate. 
• There are air deodorizers that control odor very well when emptying the pouch.

Medicines

Coated tablets or time-released capsules may come out whole in the pouch and be of no benefit at all. If you notice this, talk with your health care provider or pharmacist. There may be other medicines you can use to avoid this problem. Liquid or liquid gel medicines absorb faster and may work better for you.

Ileostomy complications

Severe skin problems

Large areas of skin that are red, sore, and weeping (always wet) will keep you from getting a good seal around your stoma. It is important to treat minor irritations right away. If you have a large irritated area, contact your doctor or ostomy nurse. They may prescribe medicine such as Mycostatin^® powder or Kenalog^® spray to help dry out and heal your skin.

For deep pressure ulcers caused by a very tight belt, loosen or remove the belt and call your doctor or ostomy nurse right away. You will need treatment.

Blockage (obstruction)

There will be times when your ileostomy does not have output for short periods of time. This is normal. But, if your stoma is not active for 4 to 6 hours and you have cramps and/or nausea, the intestine could be blocked (obstructed). Call your doctor or ostomy nurse if this happens.

There are some things you can do to help move things through your ileostomy.

• Watch for swelling of the stoma and adjust the opening of the pouch as needed until the problem has passed. 
• Take a warm bath to relax your abdominal muscles. 
• Sometimes changing your position, such as drawing your knees up to your chest, may help move along the food in your gut. 
• Do not take a laxative.

High-residue foods (foods high in fiber) such as Chinese vegetables, pineapple, nuts, coconut, and corn can cause obstruction. It can also be caused by internal changes such as adhesions (scar tissue that forms inside your abdomen).

Diarrhea

Diarrhea is large amounts of loose, watery, or liquid stool. It happens when food passes through the small intestine too quickly for fluids and electrolytes to be absorbed. It can come on suddenly and may cause cramps. It can cause your body to lose a lot of fluids and electrolytes. You must quickly replace these electrolytes to avoid getting sick from dehydration and mineral deficiency.

Loose stool can also come from eating certain foods, but it usually only lasts a short time. Raw fruits and vegetables, milk, fruit juice, prune juice, or impure drinking water are examples of things that may change your stoma output. Loose stool may also be caused by emotional stress. Some people with ileostomies may always have “watery discharge” and this is normal for them.

Several things can cause diarrhea:

• intestinal flu or food poisoning, which may also cause fever and vomiting 
• antibiotics, penicillin, and other prescription medicines 
• partial blockage, which also causes odorous discharge, cramps, forceful liquid output, and a lot of noises from the stoma. It can be caused by food or other factors. You should get medical help if this happens to you.

If diarrhea lasts, talk to your doctor or ostomy nurse.

Electrolyte balance

Electrolyte balance (chemicals in the blood, especially potassium and sodium) is important. When the colon (large intestine) is removed, you are at a greater risk for electrolyte imbalance. Diarrhea, vomiting, and a lot of sweating can increase this risk.

Dehydration is also a common concern. Symptoms include increased thirst, dry mouth, decreased urine output, feeling light-headed, and fatigue. If you get dehydrated, you will need to drink more fluids. To avoid dehydration, you should try to drink 8 to 10 eight-ounce glasses of fluid a day. If you have diarrhea, you may need more. Drinks such as Gatorade^®, PowerAde^®, or Pedialyte^® contain potassium and sodium. But any liquid containing water (soda, milk, juice, tea, etc.) helps to meet your daily need for fluid. Loss of appetite, drowsiness, and leg cramps may be signs of sodium loss. Fatigue, muscle weakness, and shortness of breath may be signs of potassium loss. Dehydration, low sodium, and low potassium can all be dangerous and should be treated right away. Keep in mind that some of these symptoms can be caused by other problems which may be emergencies. Call your doctor or 911 right away if you are dizzy, weak, or having other serious symptoms.

Phantom rectum

Phantom rectum is much like the “phantom limb” of amputees who feel as if their removed limb is still there. It is normal for you to have the urge to move your bowels the way you did before surgery. This can happen for years after your surgery. If the rectum has not been removed, you may also have this feeling and may pass mucus when sitting on the toilet. Some people who have had their rectum removed say that the feeling is helped by sitting on the toilet and acting as if a bowel movement is taking place.

Short bowel syndrome

This condition happens in Crohn’s disease and other diseases of the small intestine when surgery is needed to remove a large amount of the small bowel. Short bowel syndrome needs special attention because there is less intestine available to absorb nutrients.

People with short bowel syndrome must be under a doctor’s care. They can live a normal life but must be careful to take in enough nourishment, avoid diarrhea, and be within quick reach of medical care. The shorter the small intestine, the more watery the discharge will be. This may reduce the time a pouch can be worn because the skin barrier breaks down more rapidly. Special pouching systems are available for people with very liquid ileostomy output.

Medical emergencies

You should call the doctor or ostomy nurse if you have:

• cramps lasting more than 2 or 3 hours 
• continuous nausea and vomiting 
• no ileostomy output for 4 to 6 hours and you also have cramping and nausea 
• severe watery discharge lasting more than 5 to 6 hours 
• severe odor lasting more than a week (This may be a sign of infection.) 
• a deep cut in the stoma 
• severe skin irritation or deep ulcers (sores) 
• a lot of bleeding from the stoma opening (or a moderate amount in the pouch that you notice several times when emptying it) 
• continuous bleeding where the stoma meets the skin 
• unusual change in stoma size (prolapse or retraction) and color

Hospitalization

Take your ostomy supplies with you if you have to be in the hospital. The hospital may not have the same type you use. Prepare to do some explaining and teaching, especially if you go into a hospital where ileostomy patients are rare or if you go for a problem not related to your ostomy.

Do not let the hospital staff do any procedures you think may be harmful, such as laxatives, giving an enema through the stoma or rectum, or using a rectal thermometer. If you are in doubt about any procedure, ask to talk to your doctor.

Also ask to have the following information listed on your chart:

• type of ostomy or continent diversion you have 
• whether your rectum has been removed or is intact 
• details of your management routine and products used 
• procedures to be avoided (see above)

Living with an ileostomy

Learning to live with an ileostomy may seem like a big project. It is much like any other major change in your life. Beginning a new job, moving to another city, marriage, and having children are all examples of adapting to a new way of life. At first, you have to get used to the new aspects of these experiences and this may take some time. Having a positive outlook on life, patience, and a sense of humor are keys to adjusting to any new situation.

There are times after surgery when you may feel discouraged. You may feel alone and isolated. Because the whole experience is so new to you, you may feel awkward, frustrated and uncertain. Feeling discouraged is real and normal. You might cry, be angry, and react in ways that are unusual for you. Talking to a trusted friend, nurse, clergy, and certainly another person with an ostomy may help you work through those feelings.

Your social life can be as active as it was before surgery. You can enjoy all the things you did before, such as travel, sporting events, and eating at restaurants. The first time you go out of the house after surgery, you may feel as if everyone is staring at your pouch even though it cannot be seen under your clothing. Remember, you may feel your pouch on your body, but no one can see it.

You may also worry about your pouch filling with gas and bulging under your clothing. A quick trip to the rest room can take care of this problem. If you are worried about your pouch filling up right after eating at a social event, remember that people without ileostomies often need to go to the rest room after eating. Nobody will think it unusual if you do the same. You will probably find that you need to empty your pouch less often than you need to urinate.

Telling others

You might be worried about how others will accept you and how your social role may be changed. It is natural to wonder how you will explain your surgery. Your friends and relatives may ask questions about your operation. Tell them only as much as you want them to know. Do not feel as if you have to explain your surgery to everyone who asks. A brief answer would be that you had abdominal surgery, or that you had part or all of your colon removed.

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 they may ask questions about it and want to see your stoma or the pouch. Talking about your surgery in a natural way will help get rid of any wrong ideas that they may have. They will accept your ileostomy much the same way you do.

If you are considering marriage, talking with your future spouse about life with an ileostomy and its affect on sex, children, and family acceptance will help to correct many of your partner's wrong ideas. Going to an ostomy support group meeting together may also be helpful. Talking to other couples, in which one partner has an ileostomy, will give you both an experienced point of view.

Clothing and appearance

You do not need special clothing because ileostomy pouches are fairly flat and hard to see under most clothing. The pressure of undergarments with elastic will not harm the stoma or prevent bowel function.

If you were sick before surgery, you may find you can now begin to eat normally for the first time in years. As your appetite returns, you may gain weight. This can affect the clothes you choose more than the pouching system itself.

Cotton knit or stretch underpants may give you extra support and security. Panty hose are also comfortable. A simple pouch cover adds comfort by absorbing body sweat and also keeps the plastic pouch from resting against the skin. Men can wear either boxer or jockey-type shorts.

Eating and digestion

After healing is complete and the ostomy is working normally, most people with ileostomies can return to foods they normally eat. 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 for you. Here are a few simple guidelines about your diet:

• Doctors often have their patients follow a low-residue diet the first weeks after any abdominal surgery. This includes only foods that are easily digested, which means no raw fruits and vegetables. Be sure to find out when you can start regular foods. Eat foods that you like except those restricted by your doctor. 
• Try one food a day that you have not eaten since surgery. Eat small amounts at first, then slowly increase the amount. If a small serving gives you cramps or diarrhea, cut out that food for now, but try it again in a few weeks. 
• Drink plenty of liquids. At least 8 to 10 eight-ounce glasses of water per day is recommended. Dehydration and loss of electrolytes (salts and minerals) are possible if you don't take in enough fluids each day. Driml more fluids if you are sweating or in a hot climate.

A warning: Beets will make ileostomy output turn a reddish color much like blood, but this is not harmful. Tomato juice and food dyes may change the usual color of ileostomy output too.

Returning to work

As your strength returns, you can go back to your regular activities. If you go back to work, you may want to tell your employer or a good friend about your ileostomy. Being open about it will help educate others. Keeping it a complete secret may cause practical problems.

People with ileostomies can do most jobs. But heavy lifting may cause a stoma to herniate (bulge outward) or prolapse (fall outward). A sudden blow in the pouch area could cause the barrier or pouch to shift and cut the stoma. Still, people with ileostomies do heavy lifting when they work as fire fighters, mechanics, and truck drivers. There are athletes who have stomas too. Check with your doctor about your type of work. 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 your physical abilities.

Being able to find work and get insurance are issues for some people. If you have these issues get help from health care professionals and/or talk with others who have found solutions to these problems.

Intimacy and sexuality

Sexual relationships and intimacy are important and fulfilling aspects of your life that should continue after ostomy surgery. But there is a period of adjustment after surgery. Your attitude is a key factor in re-establishing sexual expression and intimacy. Sexual function in women is usually not changed, although sexual potency of men may sometimes be affected (but usually only for a short time). Talk to your doctor and/or ostomy nurse about any problems or concerns you or your partner might have.

Any sexuality concerns you have are best discussed openly between you and your partner. It is likely that your partner will have anxieties about sexual activities due to lack of information. An intimate relationship is one in which it matters how well 2 people can communicate.

The first time you become intimate after surgery things may not go perfectly. Men may have trouble getting and keeping an erection and women sometimes have pain during intercourse. These conditions will usually improve with time. Your interest in sex will likely return over time as your strength returns and you get better at managing your pouch system. Body contact during sexual activities will usually not harm the stoma or loosen the pouch from the abdomen.

Women may consider wearing crotchless panties, “teddies,” or a short slip or nightie. Men may consider wearing a cummerbund around the midsection to secure the pouch. There are several types of pouch covers that can be purchased or you can make your own.

Ostomy surgery may present more concerns for single people. When to tell “that someone special” depends on the relationship. Brief casual dates may not need to know. If the relationship grows and leads to intimacy, your partner needs to be told about the ostomy before a sexual experience. For more information, see the American Cancer Society document Sexuality for the Man with Cancer and His Partner, or Sexuality for the Woman with Cancer and Her Partner.

Pregnancy in women who have had ileostomy surgery is not uncommon. Before you plan to get pregnant you should talk about it with your doctor. The ileostomy itself is not a reason to avoid pregnancy. If you are healthy, the risk during childbirth appears to be no greater than for other mothers. Of course, any other health problems must be taken into consideration and discussed with your doctor.

Sports activities

An ostomy should not keep you from playing sports. But there are a few safety measures you should think about. Many doctors do not recommend contact sports because of possible injury to the stoma from a severe blow, or because the pouching system may slip. But, special protection can prevent these problems. Weight lifting could cause a hernia at the stoma. Check with your doctor about such sports. Indeed, people with ostomies are distance runners, weight lifters, skiers, swimmers, and take part in most other types of athletics.

Bathing and swimming

You may take a bath or shower with or without your pouching system in place. Normal exposure to air or contact with soap and water will not harm the stoma and water does not enter the ostomy opening. You can swim with your pouching system in place.

Remember these points:

• If you use a support belt, you can leave it on if you want to. 
• You may want to protect the barrier by taping the edges with waterproof tape. 
• You may want to choose a swim suit that has a lining for a smoother profile. Dark colors or busy patterns can also help hide the pouching system. Women may want to choose a suit with a well-placed skirt or ruffle. Men may want to try a suit with a higher waist band or longer leg. 
• Women may wear stretch panties made especially for swim suits. 
• Men may want to wear bike shorts or a support garment sold in men’s underwear departments or athletic wear departments under their bathing suits. 
• Men may prefer to wear a tank top and trunks, if the stoma is above the belt line. 
• Before swimming, empty your pouch and remember to eat lightly.

Travel

All methods of travel are open to you. Many people with ileostomies travel just like everyone else, this includes camping trips, cruises, and air travel. Here are some travel suggestions:

• Take along enough supplies to last the entire trip plus some extras. Double what you think you may need, because supplies may not be easy to get where you are going. Even if you don’t expect to change your pouch take along everything you need to do so. Zip-Lock^® bags may be used for pouch disposal. Leave home fully prepared. Find out if and where supplies are available before a long trip. A local ostomy support group may be able to help you find ostomy supplies and local medical professionals. 
• Seat belts will not harm the stoma when adjusted comfortably. 
• When traveling by car, keep your supplies in the coolest part of the car. Avoid the trunk or back window ledge. 
• When traveling by plane, remember that checked-in luggage sometimes gets lost. Carry an extra pouching system and other supplies on the plane with you. Small cosmetic bags with plastic linings or shaving kits work well. These should be kept in your carry-on luggage. 
• To avoid problems with customs or luggage inspection, have a note from your doctor stating that you need to carry ostomy supplies and medicine by hand. Further problems might be avoided by having this information translated into the language or languages of the country(s) you are visiting. 
• Before traveling abroad, get a current list of English-speaking doctors in the areas you will be visiting. The International Association for Medical Assistance to Travelers (IAMAT) at 716-754-4883 publishes lists of English speaking doctors in over 2,500 cities around the world. 
• Traveler’s diarrhea is a common problem for tourists in foreign countries, whether you have an ostomy or not. The most common cause of diarrhea is impure water and/or food. It may also be caused by changes in water, food, or climate. It is best to avoid unpeeled fruits and raw vegetables. Be sure drinking water is safe. If the water is not safe, do not use the ice either. Bottled water or boiled water is recommended. 
• Persons with ileostomies lose water and minerals quickly when they have diarrhea. (See the section "Electrolyte Balance.") For this reason you may need medicine to stop the fluid and electrolyte loss. Your doctor can give you a prescription to control diarrhea. It should be filled in your home state, before you leave so that you can take the medicine with you just in case you need it.

For parents of children with ileostomies

If your child has an ileostomy, you probably have many questions and concerns. 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 needed to save your child’s life. You may have felt shock. You may have asked yourself, “Why did this happen to us?”

It helps to talk to a good friend, your doctor, clergy, ostomy nurse, or the parents of a child who has an ileostomy. This will prepare you to help your child adjust to the ileostomy. Deal with your own feelings first, then you will be better able to give your child the emotional support he or she needs.

You may be feeling guilty or responsible for your child’s illness and surgery. These are normal feelings. You may think that your dreams have been shattered and may wonder if your child will be able to do the things that other children 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.

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. Your child may feel very helpless and scared at this time and needs the love and comfort you can give. You being there makes him or her feel safe.

Be prepared for how you will feel when you see an opening on your child’s abdomen with bowel contents running into a pouch. Your first reaction, in your child’s presence, is vitally important and must be as positive and casual as possible.

If your child has a fever or other symptoms, don’t panic. He or she will have all the aches and pains that other children have. When in doubt, call the doctor.

Psychosocial issues

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

Your son or daughter 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 or she will be, too.

Try to understand how your child feels. Your child needs to feel that you understand what it is like to have an ileostomy. Too much sympathy, however, is not good and will take away a sense of independence. Listen, try to understand feelings, encourage the child, and be tactful. It is difficult not to overprotect and pamper a child who is recovering from major surgery.

If your child is very young, they will probably accept the ileostomy more easily than you. The child will grow up with it and it will become a natural part of them. For a teenager who is facing all the problems that come with puberty and adolescence, this surgery comes at an especially difficult time. The changes in body image caused by the ileostomy may make the stresses of adolescence worse. Your teenager may feel unattractive, rejected, and different because of the ileostomy.

You may notice short-term changes in behavior patterns. Your acceptance and support is key. Try to understand the feelings and listen to the complaints. Give encouragement and try to help your child find realistic solutions to his or her problems.

Your child's ileostomy care

Take an interest in your child’s ileostomy care. If he or she is old enough, you will need to help your child learn to take care of the ostomy and pouching system on his or her own. Your child may need some help and support at first. He or she may be unsure about how to use the new supplies, feel physically weak, and become tired easily.

A very young child can be taught to empty the pouch. An older child can get supplies together and learn the steps of changing the pouch, until the whole process can be done alone. You may want to use a teaching process that begins with your son or daughter helping you. Later on you can help, then over time, stand by to help only if you are needed.

A very important person to help with care of your child is the ostomy nurse. This is a person who has special training in ostomy management. To find an ostomy nurse in your area, call the Wound, Ostomy and Continence Nurses Society at 1-888-224-9626 or visit their Web site at http://www.wocn.org.

Be prepared for trial and error in caring for, or helping to care for, your child’s ileostomy. There are some changes that will happen in the beginning that will not happen later. There may be diet adjustments, skin problems, pouching problems, and others. The important thing to remember is that all of these new changes will become more comfortable over time. A sense of humor and a positive attitude will help you and your family through this time.

Going back to school and everyday living

Be flexible as you deal with how your child adjusts to school and everyday living situations. Have a plan in place in case there are problems. Maybe the pouch will leak at school. If that happens, your child can go to the school nurse. Or, you might pick up your child for a pouching system change at home, then he or she can return to school. One youngster tells this story: he noticed that his pouch was leaking and had stained his pants. 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 may want to visit the principal, the classroom teacher, the physical education teacher, and the nurse to explain your child’s needs.

You will find that your child can take part in sports, can go on overnight trips, can camp, and, in fact, do all activities enjoyed before. At first, it may be hard to let your child go away on his or her own. Talk about what can be done if any problems come up while your child is away from home. If you can help your child know how to best handle any problems that may come up, he or she will not need any "special" treatment or seem different from any other children.

Talk with your child about how they will talk about the surgery to others. He or she may want to tell close friends and loved ones. Naturally, people will be curious. Once the surgery is explained, chances are your child will be accepted as before. Your child will likely repeat what you say. If you talk about the surgery it in a natural way with others, your child will too.

Remind your child to think about others too. For example, cleaning up the bathroom after ileostomy care is important. You and your child are facing a new situation in your lives. If it is approached with openness, firmness, and a sense of humor, you will find that an ileostomy will not stop your son or daughter from taking part in life’s everyday activities. Parents find that a healthy child with an ileostomy can once again be a happy child.

Each summer, a Youth Rally for ages 11 to 17 is held on a college campus. This is a camp for young people with ostomies or any other bowel or bladder changes. Planned learning sessions on self-esteem, body image, hygiene, and ostomy issues, plus discussion sessions, craft projects, tours, and sports are offered. Visit http://www.rally4youth.org for more information.

Getting help, information, and support

There are many ways to gain a greater understanding of your life with an ileostomy. Your doctor and ostomy nurse are important sources of information and support. In addition, a lot of information can be found at various Web sites (see the "Additional resources" section).

Taking part in an ostomy support group can be very helpful. It allows you to share your feelings and ask questions as you learn to live with your ileostomy. It also lets you share your successes with others who may need the benefit of your experience. Most ostomy visitor programs and support groups are sponsored by local ostomy support groups.

A number of cancer centers may have ostomy rehabilitation programs which include all types of ostomies, whether or not they are caused by cancer. Check for available services such as pamphlets, ostomy supplies for people without insurance coverage, or assistance in contacting the local UOAA chapter. You can also contact the American Cancer Society (1-800-ACS-2345) for information on ostomy support groups.

Additional resources

More information from your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may ordered from our toll-free number, 1-800-ACS-2345.

After Diagnosis: A Guide for Patients and Families (also available in Spanish)

Sexuality for the Woman with Cancer and Her Partner

Colorectal Cancer (also available in Spanish)

National Organizations and Web Sites*

United Ostomy Associations of America, Inc. (UOAA)
Toll-free number: 1-800-826-0826
Web site: http://www.uoaa.org

International Ostomy Association (IOA)
Telephone number: 416-633-6783 (in Canada)
Web site: http://www.ostomyinternational.org

Wound, Ostomy and Continence Nurses Society (WOCN)
Toll-free number: 1-888-224-9629
Web site: http://www.wocn.org

The WOC nurse is a specialist in ostomy care and rehabilitation. These nurses care for and teach individual ostomates, coordinate patient care, teach nursing personnel in hospitals and clinics, and work closely with the nursing and medical professions to improve the quality of ostomy rehabilitation programs. The WOCN Society can help you find a WOC nurse in your area.

Medicare, Medicaid, and Social Security in the United States
Toll-free number: 1-800-633-4227 (1-800-MEDICARE)
Web site: http://www.medicare.gov

Ileostomy care and supplies are covered under part B of Medicare. These same supplies and care may be covered under Medicaid (this is state regulated and varies). Check with an ostomy nurse about which health department or agency in your state may be able to help you. Social Security disability benefits are available to those who qualify.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-ACS-2345 or visit www.cancer.org.

Glossary of Terms

Benign: not cancerous, not malignant

Colectomy: removal of all or part of the colon

Colitis: inflammation of the large intestine. A particularly severe type is ulcerative colitis, which may require an ileostomy.

Colon: part of the intestine which stores digested food and absorbs water. Also referred to as the large intestine or the large bowel.

Crohn’s disease: also may be called ileitis, regional enteritis, or granulomatous disease of the bowel. This is an inflammatory bowel disease which penetrates the deep lining of any part of small or large bowel. In some cases, ileostomy becomes necessary, but Crohn’s can flare up after ileostomy surgery.

Electrolytes: salts and minerals needed by the body for health

Enzymes: substances formed in animal and plant cells that start or speed up specific chemical reactions

Flange: also called the face plate. This is the molded plastic part of a two-piece reusable pouch system. The face plate sticks to the skin around the stoma and connects to the ostomy pouch.

Familial polyposis: also called familial adenomatous polyposis. This is a rare disease that runs in families. It causes the colon and rectum to have many polyps. This is very different from the presence of a small number of polyps in the colon. Familial polyposis requires close regular check-ups of all members of the family because of the risk of serious problems and a strong tendency to develop into cancer.

Hernia: the protrusion (bulging) of a loop of an organ or tissue through a structure which usually contains it, or the protrusion of an internal organ through the abdominal muscles (abdominal hernia). This can happen around stomas.

Ileostomy output: waste matter from the ileum (small intestine). Also referred to as intestinal contents, discharge, drainage, body waste, stool, or feces.

Ileostomy: an opening of the ileum in which the end of the small intestine (the ileum) is brought out surgically through an opening in the abdomen. Intestinal contents are passed out of the body through this opening.

Ileum: lowest part or end of the small intestine

Inflammatory bowel disease (IBD): general term for ulcerative colitis and Crohn’s disease.

Malignant: cancer

Obstruction: any blockage in the digestive tract. Symptoms include no ostomy output over several hours or spurts of watery stool. Obstruction is often combined with abdominal cramping and nausea.

Ostomy: also called a stoma. A surgically created opening in the abdominal wall through which the body gets rid of waste. This term refers to ileostomies, colostomies, and urostomies.

Ostomy nurse: A nurse who takes care of and teaches ostomy patients. A special training course for registered nurses is required for certification. This nurse may also be called a Wound, Ostomy and Continence nurse (WOC) or an Enterostomal Therapy (ET) nurse.

Ostomy visitor: a person with an ostomy who has had special training to visit people before or shortly after ostomy surgery. The visitor offers support and information rather than medical advice.

Peristalsis: progressive waves of motion which occur without voluntary control to push waste material through the intestine

Polyps: small projections inside the bowel; often mushroom shaped but, may be flat. Polyps are usually benign, but can be malignant. See benign and malignant.

Prolapse: a “falling outward” in which the stoma becomes longer

Rectum: lowest portion of the large intestine

Retraction: the stoma draws back into the body

Skin barrier: any one of many substances used to cover the skin around the stoma. Can be pliable sheets, pastes, etc.

Stoma: the opening or end of the ureter, ileum, or colon which may be seen coming through the skin. It often protrudes like a nipple and is 3/4” to 1-3/4” in diameter. It is usually pink to red in color. There are no nerve endings in the stoma, so it is not a source of pain or discomfort.

Ulcerative colitis: one form of inflammatory bowel disease in which ulcers form in the intestinal lining of the colon and rectum. Severe, often bloody, diarrhea is the main symptom of the disease, which is most often found in young adults. See colitis.

Wound, Ostomy and Continence (WOC) nurse, or an Enterostomal Therapy (ET) nurse: see ostomy nurse

In its original form this document was written by the United Ostomy Association, Inc. (1962-2005) and reviewed by Jan Clark, RNET, CWOCN. It has since been modified and updated by the American Cancer Society.

Revised: 1/4/2008