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| Ileostomy Guide | |
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For the thousands of people who have serious digestive diseases, an ileostomy can be the start of a new and healthier life. If you have had a chronic (long-term) or even life-threatening disease, you can look forward to feeling much better after you recover from this surgery. You can also look forward to returning to most, if not all of 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 medical terms. Words in the glossary will be in italics when they are first used in this guide. What is an Ileostomy? An ileostomy is an opening in the abdominal wall (belly) that is made during surgery. Body waste comes out of this opening. 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 end of your small intestine, which looks a lot like the lining of your cheek. As part of this surgery, the colon and rectum are often removed (this is 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, waste no longer comes out of the body through the rectum and anus. Digestive contents now leave the body through the stoma. The drainage is collected in a pouch that sticks 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 job 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 in the ileostomy output 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. Ileostomy surgery is done for many different diseases and conditions. Some of the conditions that can 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 needs. Give new things a fair chance, but do not continue 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 be confident and comfortable taking care of your ileostomy by yourself. How long will I need my ileostomy? An ileostomy may be long-term or short-term depending on the reason for surgery. In a long-term or permanent ileostomy, the entire colon, rectum, and anus are removed or bypassed. With a short-term or 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 treated by other methods. The most frequent reason for having 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 ileo-anal reservoir (or J-pouch), which we discuss in the section, "Types of ileostomies." The normal digestive system An ileostomy creates a major physical change for a patient, but it does not really change the body’s chemistry and digestive functions. To understand how an ileostomy works and the changes to your body, it helps to know how the digestive tract normally works (see Figure 1). After food is chewed and swallowed, it passes through the esophagus (swallowing tube) into the stomach. From there it goes into the small intestine. Hours can go by before it moves into the large intestine (colon). After hours or even days, it leaves the storage area called the rectum by way of the anus. For most of its passage, the food is liquid and loose. Water is absorbed in the colon, causing the stool to become a firm mass as it nears the rectum. Figure 1
The small intestine The small intestine is the longest section of the digestive tract. Food nutrients are digested and absorbed here as food is moved through by peristalsis. (Peristalsis is the wave-like movement of intestine muscles that moves food along the digestive tract.) The small intestine is about 20 feet long. It is made up of 3 sections:
The large intestine The large intestine (also called the colon or large bowel) joins the small intestine where the ileum and cecum meet on the body's right side. It is about 5 to 6 feet long, and is made up of these sections:
The main jobs of the large intestine are absorbing water and electrolytes,(minerals like sodium, calcium, and potassium that the body needs to work normally.), moving stool, and storing waste until it is passed out of the body. The rectum and anus The 2 end portions of the digestive tract are the rectum and anus. Special nerve pathways to the brain make us aware when the stool reaches this section. Only at this point do we have any control over part of the digestive process. As the stool enters the rectum, we feel the need to have a bowel movement. The anal sphincter muscle is like a valve that allows us to control this. Unlike the rest of the digestive tract, it contracts (closes) or relaxes (opens) at our will. Contraction will stop a bowel movement while relaxation allows stool to pass out of the body. Three major types of ileostomies 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
Continent ileostomy (abdominal pouch)
Ileo-anal reservoir (J-pouch or pelvic pouch)
Ileostomy management Learning to care for your ileostomy may seem hard at first, but with practice and time it will become second nature, just like shaving or bathing. A good pouching system should be:
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 near the stoma, and your height and weight all must be considered. Special changes may have to be made for stomas near the hipbone, waistline, groin, or scars. Some companies have 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. If you are having trouble with a pouching system, talk to an ostomy nurse. You may have to try different types or brands to find the system that best suits you. Types of pouching systems A pouching system is used to collect ileostomy output. There are 2 main types of systems available. Both kinds include a part that sticks to your skin, called a faceplate, flange, skin barrier, or wafer, and a collection pouch.
The barrier or base of the pouch may need a hole cut out for the stoma, or it may be sized and pre-cut. It is designed to protect the skin from the stoma output and to be as gentle to the skin as possible. Pouches for one- and two-piece systems are drained through an opening at the bottom. They are made from odor-resistant materials and vary in cost. Pouches are either clear or opaque and come in different lengths.
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 should be no more than 1/8 inch larger than the stoma. Belts and tape
Wearing a belt is a personal choice. Some people with 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 like a frame. If you choose to wear a belt, adjust it so that you can get 2 fingers between the belt and your waist. This helps to keep you from getting 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 an ostomy nurse can talk to you about making one yourself. Changing the pouching system There may be less bowel activity at certain times in the day. It is 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 digestive movement 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 affect 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.
Emptying the pouch Empty the pouch when it is 1/3 full to keep it from bulging and leaking. Follow these steps:
Ordering and storing 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. But don't stockpile supplies because they may be ruined by changes in temperatures. Supplies do not need to be sterile. The stoma and nearby skin are clean but not sterile. To order 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. If you want to order supplies online, talk with your nurse about reputable dealers who can supply you with what you need. You will also want to check with your health insurance provider to be sure that they work with the company in question. You may also want to compare prices when using mail order and the Internet to include how much you will pay for shipping. For information and help 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 The skin around your stoma should always look the same as skin anywhere else on your abdomen. But ileostomy output can make this skin tender or sore. Use the following tips to help keep your skin healthy:
Spots of blood on the stoma Spots of blood are not a 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 quickly. If it does not, call your ostomy nurse or your doctor. Shaving hair under the pouch Having a lot of hair around the stoma can make it hard to get the skin barrier to stick well and may cause pain when you remove it. Shaving with a razor or trimming hair with scissors is helpful. Extra care should always be taken when using a straight edge or safety razor. Use a mild soap or shaving cream. Rinse well. Bathing You may take a bath or shower with or without your pouch in place. If you do not wear the pouch, keep in mind that the output may keep coming out. Soap cannot harm the stoma. Just rinse it well. Do not use bath oil around the stoma -- it can make it hard to get the pouch to stick well. If you bathe with your pouch off, be sure your skin is dry and cool before you replace the pouch. Otherwise the heat from a hot bath or shower can keep the skin warm and cause sweating under the barrier, which makes it hard to get a secure seal. Pat dry and apply the pouch. 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, broccoli, 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 smaller amounts of food 4 to 5 times a day. You may be worried about how others may respond to gassy noises. You will find that these noises sound louder to you than to others. They often only sound like stomach rumblings to those around you. If you are embarrassed by these rumblings when others are nearby, you can say, "Excuse me, my stomach’s growling." When you are with people, if you feel as though you are about to release gas, 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 foods can produce odor: eggs, cabbage, cheese, cucumber, onion, garlic, fish, dairy foods, and coffee are among them. If you find that certain foods bother you, avoid them. 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 in the colon that break down food and cause odor are not found in the small intestine. Here are some hints for odor control:
Medicines Coated tablets or time-released capsules may come out whole in the pouch. This usually means you did not get the medicine. If you notice this, talk with your health care provider or pharmacist. There may be other medicines you can use to avoid this. Liquid or liquid gel medicines absorb faster and may work better for you. Ileostomy problems 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.
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 after surgery). Diarrhea Diarrhea is usually a warning that something is not right. Diarrhea is defined as frequent loose, or watery bowel movements in greater amounts than usual. 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:
Talk with your doctor or ostomy nurse if you have ongoing diarrhea or constipation. Discuss the foods and liquids you take in, your eating schedule, how much you usually eat, and any medicines you might be taking. You may be given medicine to help slow things down or to stimulate the bowel. Remember, no matter what, you need a well-balanced diet and good fluid intake to have a good output. Electrolytes are salts and minerals in the blood, like potassium, magnesium, and sodium. Keeping them balanced 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 serious concern. Symptoms include increased thirst, dry mouth, decreased urine output, feeling light-headed, and feeling tired. 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 have this feeling and also 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 done to remove a large part 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. When you should call the doctor You should call the doctor or ostomy nurse if you have:
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 assume that all hospital staff know a lot about ostomies. Do not let the hospital staff do any procedures you think may be harmful, such as give you laxatives, give an enema through the stoma or rectum, or use a rectal thermometer. If you are in doubt about any procedure, ask to talk to your doctor first. Also ask to have the following information listed on your chart:
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. Starting 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 takes some time. Having a positive outlook on life, patience, and a sense of humor are keys to adjusting to any life changes. 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 clothes. 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 clothes. 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 likely 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 change. 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 clear, brief answer would be that you had abdominal surgery, or that you had all or part of your colon removed. If you have children, answer their questions simply and truthfully. A simple explanation is often 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 single and dating, you can pick your time to tell but it seems better to do so early in a relationship. Stress the fact that this surgery was necessary and managing your ileostomy does not affect with your activities and enjoyment of life. This not only lessens your anxiety, but if there is an issue that cannot be overcome, the letdown is not as harsh as it might be later. Do not wait until intimate sexual contact leads to discovery. If you are considering marriage, talking with your future spouse about life with an ileostomy and its effect on sex, children, and family acceptance will help correct any 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 will not need special clothes. 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. A simple pouch cover adds comfort by absorbing body sweat and also keeps the plastic pouch from resting against your 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:
A warning: Beets turn ileostomy output 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 (the whole thing bulges outward) or prolapse (the inside falls 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. You should know that your right to work is protected by parts of the US Rehabilitation Act of 1973, and the Americans with Disabilities Act of 1992, and sometimes by sections of your state and local laws. If you feel you are being treated unfairly ileostomy, check with the United Ostomy Associations of America or with a local legal resource about protecting your rights. 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. (If so, this is 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. A stoma on the abdomen is quite a change in how you look and can make you feel anxious and self-conscious. It is likely that your partner will be anxious about sexual activities, too, perhaps being afraid of hurting your stoma or dislodging the pouch. Talk to your partner about the fact that intercourse probably will not harm the stoma. Try to be warm, tender, and patient with each other. 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 problems usually get better with time. Your interest in sex is likely to return as your strength returns and you get better at managing your pouch system. Body contact during sexual activities will usually not hurt the stoma or loosen the pouch. If the pouch or stoma covering seems to be in the way during intercourse, try different positions or use small pillows to take pressure off the stoma. If possible, empty the pouch beforehand. 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 many 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 is leading to physical intimacy, your partner needs to be told about the ostomy before a sexual experience. For more information, see our documents Sexuality for the Man with Cancer, or Sexuality for the Woman with Cancer. Pregnancy Pregnancy in women who have had ileostomy surgery is not uncommon. But 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 considered and discussed with your doctor. Sports Everyone needs daily exercise to keep good health and body function. 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 can 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:
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 tips:
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, an 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 feel guilty or responsible for your child’s illness and surgery. These feelings are normal . 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 for 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. The first reaction your child sees from you 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 key. 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. Still, too much sympathy is not good and can take away a sense of independence. Listen, try to understand feelings, be encouraging, and be tactful. It is hard 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 your child's behavior. 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 tire 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 them, then over time, stand by to help only if you are needed. It is very important that your child have an ostomy nurse to help out at this time. This is a person who has special training in ostomy management and the emotional needs that may come at this time of change. 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 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 your child adjusts to school and everyday living. 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 still can take part in sports, go on overnight trips, camp, and, in fact, enjoy all the same activities as 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 best to 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 to others about the surgery. 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 is likely to repeat what you say. If you talk about the surgery 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. Being around other kids with ostomies can also be a great help. Each summer a camp for young people ages 11 to 17 with ostomies or any other bowel or bladder changes is held on a college campus. The camp is called The Youth Rally. Planned learning sessions on self-esteem, body image, hygiene, and ostomy issues, plus discussion sessions, craft projects, tours, and sports are offered. Visit 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. A lot of information can also be found at various Web sites, such as those listed in 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 chapters of the United Ostomy Associations of America (UOAA). A number of cancer centers have ostomy rehabilitation programs which include all types of ostomies, whether or not they are caused by cancer. Check these 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. 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.
National organizations and Web sites* United Ostomy
Associations of America, Inc. International
Ostomy Association (IOA) Wound, Ostomy
and Continence Nurses Society (WOCN) The WOC nurse is a specialist in ostomy care and rehabilitation. These nurses care for and teach people with ostomies, coordinate patient care, teach nursing staff 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 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 ( 1-800-227-2345) or visit www.cancer.org. Glossary of Terms Anus: the body opening between the buttocks through which stool leaves the body. Benign: not cancer. Colectomy: removal of all or part of the colon. See 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 called 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 invades 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 example, sodium, calcium, and potassium. Enzymes: substances formed in animal and plant cells that start or speed up certain chemical reactions. Flange: also called the face plate. This is the molded plastic part of a two-piece reusable pouch system. The flange sticks to the skin around the stoma and connects to the ostomy pouch. Familial polyposis: also called familial adenomatous polyposis or FAP. 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. See colon, rectum, and polyps. 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 belly (abdominal) muscles (abdominal hernia). This can happen around stomas. Ileostomy output: waste matter from the ileum (small intestine). Also called 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, along with cramping and nausea. Ostomy: also called a stoma. A surgically created opening in the belly (abdominal wall) through which the body gets rid of waste. This term refers to ileostomies, colostomies, both of which drain stool, and urostomies, which drain urine. Ostomy nurse: A registered nurse who takes care of and teaches ostomy patients. Special training 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: wave-like muscle contractions 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 sticks out more and becomes longer. Rectum: lowest portion of the large intestine. This is where formed stool is held until it is passed out of the body through the anus. See anus. Retraction: the stoma draws back into the body and gets smaller. Skin barrier: any one of many substances used to cover and protect the skin around the stoma. Can be pliable sheets, pastes, powders, 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 can be 3/4 to 1-3/4 inches in diameter. It is usually pink to red. There are no nerve endings in the stoma, so it is not a source of pain or discomfort. See ureter, ileum, and colon. 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 colon, rectum, and colitis. Ureter: the 2 tubes that drain urine from the kidneys, normally they go into the bladder, but in the case of a urostomy they drain urine out of a stoma. 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. Last Medical Review: 02/17/2009 |
