LIVING WITH AN ILEOSTOMY Understanding Ileostomy and Stoma Care
A New Beginning Have you just had an ileostomy? Or are you about to have one? If so, you may be thinking that life will never be the same. It s true that you ll need to make some changes in your daily routine. Once you learn how to care for your ileostomy, though, you ll most likely find that you can do all the things you did before. You may even be able to do much more. What Is an Ileostomy? An ileostomy provides a new way for the body to pass stool (waste). During surgery for certain health problems, the large intestine and sometimes part of the small intestine must be removed. Or, the large intestine must be disconnected for a short time while it heals, then reconnected. In either case, a small opening is made in the abdomen so stool can pass from the body. This is called a stoma. A stoma formed from the small intestine is called an ileostomy. Adjusting to Change Having an ileostomy won t mean giving up sports, hobbies, work, or other activities. But it does mean changes in the way your body works and how it looks. At first, you may feel anxious or depressed about these changes. Give yourself time to adjust both physically and emotionally. Your healthcare team is there to help with this process. 2
Help from Your Healthcare Team A team of healthcare providers will help guide you before and after your ileostomy. The members of your team will explain the procedure and discuss options with you. They will also teach you how to care for your ileostomy. This training may begin before the procedure. Look to your team for support and answers to questions. Team members include: The surgeon A wound, ostomy, and continence (WOC) nurse or other healthcare provider Other healthcare providers, including a home healthcare team CONTENTS You ll find useful tips on what to do and expect. 4 Understanding Ileostomy 6 Caring for Your Stoma and Skin 8 Selecting a Pouch 10 Emptying the Pouch 12 Changing the Pouch 14 Avoiding Digestive Problems 16 If You Have a Food Blockage 18 Accepting Your Body 20 Leading an Active Life 22 Common Questions 23 Words You May Hear 3
Understanding Ileostomy Food waste travels from the stomach to the small intestine. The last section of the small intestine is called the ileum. Food waste passes from the ileum into the colon (large intestine), through the colon, and out of the body. The Digestive Tract The esophagus carries food from the mouth to the stomach. The stomach breaks food into a liquid mash. The small intestine receives the food from the stomach. Nutrients are absorbed into the body. The ileum attaches to the colon. Liquid waste passes from the ileum into the colon. The colon absorbs water from the liquid waste, forming stool. The rectum stores stool until a bowel movement occurs. The anus is the opening through which stool leaves the body. 4
A thick fluid called mucus coats the lining of the small intestine to protect it. Ileostomy There are several types of ileostomy. The most common is called an end ileostomy. During this surgery, the colon and sometimes part of the ileum are removed or disconnected. The rectum and anus may also be removed. A stoma (new opening in the abdominal wall) is made, most often on the lower right side of the abdomen. The ileum is then reconnected at the stoma. An end ileostomy is most often permanent. Less commonly, it is temporary to let the colon heal from surgery or an injury. With any type of ileostomy, stool tends to be quite liquid. That s because there is no colon to absorb water from the stool. The stool from the ileum also contains digestive juices, so it is very irritating to the skin. The Stoma The stoma is created by bringing the end of the ileum through the abdominal wall and turning it back on itself, like a cuff. Types include: An end stoma. It is most often done for a permanent ileostomy. Stool and mucus pass from the same opening. If the anus is not removed, mucus passes from it as well. A loop stoma. It is most often done for a temporary ileostomy. Stool passes from one side of the stoma, mucus from the other. Most often, the anus is not removed, so mucus passes from it, too. End ileostomy End stoma Loop stoma 5
Caring for Your Stoma and Skin The stoma shrinks to its final size 6 to 8 weeks after surgery. Then it will be round or oval and sit about ¼ to ½ inch above the skin. A pouch (see pages 8 to 13) attaches to your body over the stoma to collect stool. For your comfort and to prevent problems, keep your stoma and the skin around it clean and protected. Check the Stoma and Skin Check the stoma and the skin around it for problems each time you change the pouch. Stand in front of a mirror or use a hand mirror so that you can see all the way around the stoma. It should look shiny, moist, and dark pink or red. The skin around it should be smooth, with no red, white, or broken spots. Clean Around the Stoma Clean around the stoma with warm water and a soft washcloth each time you change the pouch. Water does not harm the stoma. You can even take a bath or shower without the pouch if you like. Be sure to clean and dry the stoma gently. There are no nerves in the stoma, so you can injure it without knowing. The stoma contains tiny blood vessels. A small amount of blood when you clean it is normal. If it bleeds a lot or doesn t stop bleeding, call your WOC nurse or other healthcare provider. Photograph of a healthy stoma 6
The skin around the stoma is called peristomal skin. Protect the Skin Around the Stoma For the pouch to stick well, the skin around the stoma needs to be dry and smooth. If the skin is moist or uneven, the pouch is more likely to leak. A leaky pouch will irritate the skin. It can also cause odor. To help keep the skin healthy, pat it dry after you wash it. If needed, apply a skin barrier product (such as a wipe or gel) before you put on a new pouch. This can help protect the skin if stool leaks from the pouch. Common Causes of Skin Problems If needed, apply a sealant or barrier product to help protect the skin. Apply it in a circle around the stoma, then let it dry for 1 minute before putting on a new pouch. A leaking pouch can irritate skin. Use a measuring guide to check that the opening on the pouch is the correct size. Hair under the pouch can cause irritation. To avoid this, trim hair around the stoma with an electric razor or hair clipper. Always trim away from the stoma. Allergies to skin barriers can make the skin itch, burn, or sting. You may need to try a new skin barrier or change to a new kind of pouch. Yeast infections can make the skin red and itchy. Sweat under the pouch makes these infections more likely. A pouch cover can help keep the skin dry. When to Call Call your WOC nurse or other healthcare provider if: The skin around the stoma is red, weepy, bleeding, or broken The skin around the stoma itches, burns, stings, or develops red or white spots The stoma swells, changes color, or bleeds without stopping The stoma becomes even with or sinks below the skin or sticks up more than normal 7
Selecting a Pouch A pouch is used to collect stool. An adhesive skin barrier holds the pouch in place and helps stop stool from leaking. Most pouches are made of lightweight, odor-proof plastic. They lie flat against the body. Your WOC nurse or other healthcare provider will help you select the type of pouch that s best for you. Common types are shown below. Two-Piece Drainable The skin barrier and pouch are separate. The barrier is applied to the skin. The pouch snaps onto the barrier. The pouch bottom is a tail with an opening. The tail is folded and closed with a Velcro closure or clip. To empty the pouch, you undo the Velcro or open the clip. Pouch Velcro Skin barrier Tail Clip One-Piece Drainable The skin barrier and the pouch are one piece. The barrier holds the pouch on the skin. The pouch bottom is a tail with an opening. The tail is folded and closed with a Velcro closure or clip. To empty the pouch, you undo the Velcro or open the clip. Tape Pouch Tail Skin barrier Two-piece drainable pouch One-piece drainable pouch 8
Sizing the Opening The skin barrier must fit around the stoma without touching it. Some skin barriers have precut openings. Others you size and cut yourself. A measuring guide helps you find the right size opening for your stoma. Most pouches come with a guide. Your healthcare provider may also give you one. Find the correct hole on the guide. Be sure there is about ¹ 16 to ¹ 8 inch between the stoma and the guide hole. To cut the opening, center the guide hole on the back of the skin barrier. Trace the circle. Then cut the opening with curved scissors. For precut openings, order pouches with the opening that matches the correct size on the guide. Other Supplies Your WOC nurse or other healthcare provider can help you determine what other ostomy supplies you need. These may include: Skin sealants Skin barrier products (wipes, paste, gel, cream, or powder) Skin barrier rings or strips Adhesive remover Pouch filters and deodorants An ostomy belt A pouch cover Measuring guide Stoma A measuring guide helps you find the right size opening for the pouch. Ostomy belt Skin barrier 9
Emptying the Pouch A drainable pouch needs to be emptied when it is about one-third full. This keeps it from showing under your clothes. It also helps prevent leaking and odor. To empty the pouch, follow these steps. 1. Empty the Pouch Sit on or next to the toilet. Place a layer of toilet paper in the toilet bowl. This helps prevent splashing. Pull your clothes away from the pouch. Hold the bottom of the pouch up. Undo the clip and set it aside. Or open the Velcro closure. Slowly unroll the tail over the toilet. Slide your fingers down the pouch to empty it of stool. To empty the pouch, run your fingers down the pouch to push out all of the stool. 2. Clean the Pouch Wipe the inside and outside of the tail with toilet paper. This can help stop odor. Check both sides of the pouch for tears or holes. If you find any, put on a new pouch. Rinse the clip if needed. To rinse out the pouch, hold the tail up and pour water into the pouch. Hold the tail closed and shake the pouch gently. Then empty the pouch into the toilet. To help prevent odor, wipe the inside and outside of the tail with toilet paper. 10
Always empty your pouch directly into the toilet. 3. Close the Pouch If your pouch has a clip (see right): Open the clip. Lay the bar of the clip flat about 1 inch from the bottom of the tail of the pouch. Fold the tail up over the bar. Make sure the tail lies flat against the bar. Also make sure the whole width of the tail is held within the bar. If it isn t, the pouch may leak or smell. Hold the tail of the pouch firmly against the bar. Then close the clip by bringing the grooved hinge up to the bar. Press the two parts together until they lock. If your pouch has a Velcro closure: Fold the tail of the pouch. Press the two sides of the Velcro together. Releasing Gas Gas can collect in the pouch even if there is no stool. Never puncture the pouch to release gas. If you do, you ll break the odor-proof seal or leak stool. To release gas, follow these steps: Hold the tail of the pouch up slightly and undo the closure. Hold the top of the pouch with one hand. With the other hand, push the gas out by sliding your thumb and index finger from the top to the bottom of the pouch. Follow the steps under Close the Pouch above. If directed, you can also unsnap part of the pouch from the barrier and release gas from there. Hinge Bar Tail of pouch Closed clip Tail of pouch To prevent leaks and odor, make sure the whole width of the tail is held within the clip or Velcro closure. To release gas, open the tail of the pouch. Push the gas out by sliding your thumb and index finger the length of the pouch. 11
Changing the Pouch Stool starts to pass from the stoma soon after surgery. A nurse will change the pouch at first. In a short time, you will learn how to change it yourself. A drainable pouch needs to be changed 1 to 2 times a week. How often is determined by the type of pouch and your needs. Follow the steps below. Gather What You Need Plastic bags Toilet paper Soft washcloth and clean towel Skin barrier product (wipe, gel, paste, cream, or powder) if needed New pouch 1. Remove the Used Pouch Empty the pouch (see page 10). Sit on or next to the toilet. Start at the upper edge of the skin barrier. Carefully push the skin away from the barrier with one hand. Slowly peel back the barrier with the other hand. Peel all the way around the skin barrier until the pouch comes off. Seal the pouch in a plastic bag. Put that into a second plastic bag. Then throw the double-bagged pouch away. To remove the used pouch, carefully push the skin away from the barrier with one hand. Slowly peel back the barrier with the other hand. 12
2. Clean Around the Stoma Wipe any stool off the skin around the stoma with toilet paper. Clean the skin with warm water and a soft washcloth. Clean right up to the edge of the stoma. You can also shower with the pouch off. Pat the skin dry with a clean towel. Put on a skin barrier product if needed. 3. Put On the New Pouch Size and cut the barrier opening if needed (see page 9). Slowly peel the backing off the barrier. Carefully place the barrier over the stoma. If you use a two-piece pouch, snap the pouch onto the barrier. Start at the bottom and work your fingers around the flange (rim). Press the barrier against the skin with your fingertips. Lay your palm over the barrier and hold it there for 45 seconds. This seals the barrier to your skin. To ensure the pouch is secure, tug gently. Close the tail of the pouch (see page 11). When to Call Call your WOC nurse or other healthcare provider if: Wipe any stool off the skin. Then clean the skin with warm water and a soft washcloth. Skin barrier Flange Place the skin barrier carefully over the stoma. If you use a two-piece pouch, snap the pouch onto the barrier. Your pouch won t stay on Stool leaks under the barrier You see undissolved medication (pills or capsules) in the pouch You are having any problems with your pouching system 13
Avoiding Digestive Problems You don t have to eat special foods because you had an ileostomy. But limiting certain foods and drinks may help make digestive issues less likely. Follow the tips on these pages to help prevent problems. Take note of what foods and drinks work best for you. You can also get advice from your dietitian or other provider about food and digestive issues. Choosing Foods That Work for You Learning how food affects you can take a while. After surgery, try to add foods back to your diet one at a time. At first, eat only small amounts of a food. See how your body reacts. If a food causes a problem, wait and try it again in a few weeks. Once your system adjusts, you may find the food no longer gives you trouble. If a food gave you trouble before your surgery, continue to avoid it. Preventing Fluid Loss The small intestine doesn t absorb as much water as the colon. That means your body loses fluids and can become dehydrated quicker. To prevent this, drink at least 8 to 10 eight-ounce glasses of fluids, such as water, herbal tea, or broth, each day. Taking Medications Time-release capsules and coated pills can t be absorbed in the small intestine. Be sure all healthcare providers know you have an ileostomy before they prescribe medications. This helps ensure you receive a form that will work for you. You May Need Supplements After an ileostomy, some vitamins and minerals cannot be absorbed. Blood tests may be done to determine your levels of certain nutrients. Your provider may prescribe supplements to help you maintain normal levels. You may also be advised to eat more of certain foods, such as bananas. 14
If You Have Diarrhea Watery stool is normal with an ileostomy. At times, due to diet or illness, you may have stool that is looser and more watery than normal (diarrhea). Pay attention to what is normal for you. If you have diarrhea: Avoid foods that can further loosen stools, such as raw fruits and vegetables, garlic, onions, alcohol, spicy foods, and foods that are high in fat or sugar. Drink extra fluids to help prevent dehydration. Never take diarrhea medication without talking with your doctor first. Limiting Gas and Odor Limiting gas and odor can help you feel more comfortable in public. Causes of gas or odor can vary from person to person. Try these tips: Gas is often caused by swallowing air. To avoid this, eat slowly. Chew each bite well. Sip fluids, don t gulp. Never use a straw. If you have excess gas, go easy on foods such as beer, sodas, broccoli, onions, and beans. Ask your healthcare provider or look online for a more complete list. If odor is a problem, you might limit or avoid foods such as cabbage, cheese, eggs, fish, and garlic. Ask your provider or look online for a more complete list. When to Call Call your WOC nurse or other healthcare provider if Cramps or nausea with nothing passing from the stoma for 4 to 6 hours Prolonged nausea or vomiting Abdominal cramping for longer than 2 to 3 hours Severe watery stool for longer than 5 to 6 hours Bad or new odor for longer than 1 week Lots of bleeding from the stoma or repeated bloody stools Change in stoma size or appearance Dizziness, weakness, or muscle cramps you have: 15
If You Have a Food Blockage After an ileostomy, it is often harder to digest foods that are high in fiber. This includes raw vegetables, popcorn, and nuts. If eaten in large amounts, these foods can clump and get stuck in the small intestine. This results in a blockage. Know the signs of a blockage and what to do if you have one. Signs of a Blockage A blockage is usually an emergency. A blockage can quickly cause dehydration. If the stool doesn t pass, it can cause the intestine to rupture. You may never have a blockage, but you should know the signs. These include: No output from the stoma Constant spurting of very watery stool or very smelly discharge (partial blockage) Cramping and bloating Swelling of the skin around the stoma Nausea, vomiting, and distension of the abdomen Steps to Take If You Have a Blockage Do not eat any solid food. Do not take any laxatives or stool softeners. They cause your body to lose more water. Try one or more of the following: If the stoma swells, put on a pouch with a larger opening. Drink warm fluids. Gently massage your abdomen with the palms of your hands. Lie on your back. Pull your knees to your chest and rock from side to side. Take a warm bath for 15 to 20 minutes. Call your healthcare provider or go to the emergency room right away if you have cramps or nausea and no output from your stoma for longer than 4 to 6 hours. (Your healthcare provider may give you different instructions.) 16
To help prevent blockage, eat only small amounts of the foods on the list below. Help Prevent a Blockage Discuss your diet with your dietitian. He or she can help you make choices that will help keep you comfortable and prevent problems. To help make a blockage less likely, follow these steps: Drink at least 8 to 10 eight-ounce glasses of fluids, such as water or juice, each day. Chew your food slowly and thoroughly. Eat only small amounts of foods that are high in fiber or cellulose, such as those listed below. Raw vegetables Unpeeled fresh fruits Bamboo shoots Bean sprouts Cabbage Celery Coconut Foods to Limit During any one meal and in any one day, have only small amounts of these foods: Corn Mushrooms Pea pods Dried fruits Nuts Seeds Popcorn Meats in casings (such as hot dogs or sausages) Bran Granola High-fiber grains 17
Accepting Your Body Adjusting to having a stoma takes time. Make the transition easier by taking an active role in your care. Work with your healthcare team to ensure you get the advice and support you need. Keep in mind: Having an ileostomy means a change in your body. It does not change who you are as a person. Getting Support It s normal to be anxious about having an ileostomy. At first, you may have trouble looking at your stoma or changing your pouch. This will get better with time. Your healthcare team will help by teaching you to care for yourself. If you have fears, doubts, or concerns, talk with your WOC nurse or another member of your team. He or she can help you work through your feelings or refer you to someone who can. Talking with another person with an ileostomy can help, too. Members of the United Ostomy Associations of America (UOAA; see the back cover for details) are happy to answer questions, share tips, and talk over concerns. Telling Others No one can tell by looking at you or talking to you that you have an ileostomy. Your pouch won t bulge or smell if it s worn and cared for correctly. It s your choice who you tell, and when. If you date, bring it up when you feel at ease with the person. It s best to talk about it before you decide to have sex. 18
Sexual Intimacy The idea of having sex again may be hard to deal with at first. You may be afraid of being rejected or worry that you won t be able to relax and be yourself. Give it time. Talk about your feelings with your partner, if you have one. Know that people with ileostomies date, marry, and have children. Your WOC nurse or other healthcare provider can talk through your concerns with you. When you re ready to be intimate, keep these tips in mind: Before you have sex, empty your pouch. You may want to wear a pouch cover or a shirt over the pouch. Or you might tuck the pouch under a soft belt or inside underwear with an open crotch. Never put anything into the stoma during sex. Don t forget that you can express love in many ways, such as hugging, kissing, and caressing. For Partners and Loved Ones A person with an ileostomy hasn t changed. But he or she needs time to adjust. Your partner may be depressed or withdrawn at first. Keep in mind that you re not the cause. Reassure your partner that you care. If your partner wants help taking care of the ileostomy, a WOC nurse or other healthcare provider can help you learn what to do. If you re afraid or have questions, contact the UOAA (see the back cover) or attend the organization s meetings. 19
Leading an Active Life Having an ileostomy won t prevent you from being active and enjoying life. In fact, if your ileostomy was for a chronic disease, you may be able to do more now than you could before. In most cases, it s your choice whether or not to put limits on your life. Work People with ileostomies do all kinds of work. And all kinds of people have ileostomies, including athletes and celebrities. You can return to work as soon as the surgeon says it s okay. There may be special considerations for certain types of work: For heavy labor, such as lifting or digging, you may need an abdominal support to help prevent a hernia. During lots of movement, an ostomy belt can help keep the pouch securely in place. Exercise An ileostomy need not keep you from most sports and activities. Being active is a good way to relieve stress and stay healthy. It can help you feel better about yourself, too. Be sure to: Start slowly. Don't push yourself before you have your strength back. Talk to your WOC nurse or other healthcare provider before playing contact sports or weight lifting. You may need to wear a special support or a cover to protect your stoma. 20
Bathing and Swimming Water will not hurt the stoma. You can take a shower or bath with or without a pouch. You can also go swimming. There are swimsuits made for people with ostomies, but many normal swimsuits will hide a pouch. Look for what works for you. A rubber (not elastic) belt will help hold the pouch in place. Clothing Pouches lie flat against the body. That means they don t show, even under tight clothing. Feel free to wear anything you like, including belts, leggings, tights, and shapewear. Just make sure that belts and waistbands don t rub the stoma. Travel You can likely travel anywhere. Just be sure to bring your supplies with you. Keep these tips in mind: When flying, pack supplies in both your carry-on and checked luggage. Precut pouches at home to avoid having scissors in your carry-on. When driving, don t put supplies in the trunk or glove compartment. Heat can break them down or distort them. Fasten seat belts above or below the stoma to avoid rubbing. Unfamiliar food and drink can cause digestive issues. Wash your hands well. Avoid uncooked food. Also, drink bottled water unless you are sure the tap water won t cause you problems. 21
Common Questions Learning as much as you can about your ileostomy will help make the adjustment easier. As you learn, you will likely have questions. Your WOC nurse or other healthcare provider can help answer them. Below are answers to some common questions. Q Q Q Q Can I still take medications with an ileostomy? Where do I buy supplies? Can I drink alcohol and caffeine? Why do I still sometimes feel as if I m going to have a bowel movement through the rectum? A: In most cases, yes. However, some medications are absorbed in the colon. An ileostomy could affect the way they act in the body. Also, some coatings will prevent medication from being absorbed. In addition, certain medications can make your stool harder or looser. Talk to your healthcare provider about medications you already take and before starting any new medications. A: Ileostomy supplies can be ordered through the mail and online, and bought at some medical supply stores. Be sure you know the maker and product number of the supplies you use. Order new supplies well before you run out. A: Most likely, you can still drink alcohol and caffeine in moderation. However, they may change your stool or affect your stoma. So talk to your WOC nurse or other healthcare provider about what is best for you. A: The feeling may occur because nerves cut during surgery still send messages to the brain. It may also occur if the rectum remains and mucus builds up in the rectum over time. This may tell the brain that you need to have a bowel movement. It is okay to pass the mucus. 22
Words You May Hear Blockage Colon Colorectal surgeon Ileum Mucus Ostomate Ostomy Resection Small intestine Stoma Stool Wound, ostomy, and continence nurse Stool is stuck in the intestine and cannot pass through the stoma. See pages 16 and 17 for more about preventing a blockage and what to do if you have symptoms. The large intestine, also called the large bowel. A doctor who operates on the colon and rectum. Sometimes called a GI (gastrointestinal) surgeon or a general surgeon. The last section of the small intestine. It connects to the colon on the lower right side of the abdomen. A thick fluid produced by the body. Mucus helps lubricate and protect the intestine and helps stool pass. After an ileostomy, it is normal for mucus to pass out of the stoma or rectum. Note that this mucus may sometimes look like stool. A person who has an ileostomy. Surgery to create a new opening in the body. For an ileostomy, the small intestine is brought through a new opening in the abdomen to form a stoma. Removal of part or all of a diseased or damaged intestine. The part of the digestive tract between the stomach and the colon. An opening on the abdomen that allows stool to pass from the body. Waste left after food is digested. It is passed out of the body. The full name for a WOC nurse. This type of nurse has advanced training and practice in how to care for people with ostomies. 23
Getting Support Adjusting to an ileostomy takes time. But know that you re not alone. Your family and friends can provide support. Your healthcare team is also there to teach you what you need to know and answer questions. For support groups and more information, use the resources below. United Ostomy Associations of America (UOAA) Provides support and information for people with ostomies and their loved ones. 800-826-0826 www.ostomy.org Wound, Ostomy and Continence Nurses Society Provides help finding a WOC nurse in your area and information about ostomy care. www.wocn.org Crohn s and Colitis Foundation of America Provides support and information to people with Crohn s disease and ulcerative colitis, including information on ileostomy. www.ccfa.org Also available in Spanish TAKE OUR PATIENT SURVEY. Help us help other patients. Please visit www.kramesurvey.com to provide your feedback on this booklet. This booklet is not intended as a substitute for professional medical care. Only your doctor can diagnose and treat a medical problem. 2014 The StayWell Company, LLC. www.kramesstore.com 800.333.3032 All rights reserved. Made in the USA. 12105 1510