Patient Education Series Managing Your Ileostomy IleostomyBooklet 8/6/2005 11:29 Page 1

Table of contents About your ileostomy • The ...... 1 About • What is an ileostomy? ...... 3 your ileostomy • Location of the ...... 4 Every year, thousands of people • Stool from an ileostomy ...... 4 have ileostomy . For some, the surgery is a lifesaving Ileostomy pouching systems procedure. For others, the surgery relieves years of suffering from • One-piece system ...... 5 bowel disease. Whatever the •Two-piece system...... 5 medical reason, anyone who is going to have ileostomy surgery •Drainable pouch ...... 5 has many questions and concerns. The purpose of this booklet is to Lifestyle answer some of your questions about ileostomy surgery and to • Skin care ...... 5 ease some of your concerns about • Diet ...... 6 living with an ileostomy. It will help you manage and understand • Odour...... 7 your ileostomy. It is important to • Gas...... 8 remember that you are not alone. This booklet is provided to you by • Diarrhoea...... 9 your health care team and • Dehydration...... 9 supplements other information given to you by your doctor and •Alcohol...... 10 ET nurse – a nurse who •Medication...... 10 specialises in ostomy care. Remember to write down your • Bathing or showering ...... 11 questions and discuss these with your doctor or ET nurse. • Clothing ...... 11 • Returning to work and travelling...... 11 • Exercise and sports ...... 12 Your ET nurse: ...... •Sex and personal relationships ...... 12 • Religion ...... 13 Contact numbers: • Routine care of your ileostomy ...... 14 ...... Glossary ...... 16

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Oesophagus

Stomach

Colon

Small Intestine

Rectum

Anus

The human digestive system

When you chew your food and swallow it, your food goes down your oesophagus into your . Stomach acids and chemicals called enzymes break down the food until it becomes a liquid mixture. From your stomach, the liquid food mixture goes into your .

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Duodenum

Jejunum

Ileum

The small intestine, which is about six metres (20 feet) long is where most takes place. The small intestine is divided into three sections. The first section is called the duodenum, the second section is called the jejunum, and the third section is called the . As the liquid food mixture moves through the small intestine, nutrients are absorbed into your body’s blood stream. Vitamins, minerals, proteins, fats and carbohydrates are all absorbed into your body through your small intestine. Any food that is not digested and absorbed in the small intestine goes into the as liquid waste, or stool. Your large intestine is also called the colon. It is generally about two metres (5-6 feet) long. The purpose of the colon is to absorb water from your stool, and to store the stool until you have a bowel movement. The colon is divided into four parts: the ascending colon, the transverse colon, the descending colon and the sigmoid colon. As the stool moves through your colon, more and more water is absorbed until the stool becomes completely formed. When you have a bowel movement, the stool goes from your colon into your , and then out of your body through your anus. A muscle in your anus, called the anal sphincter, allows you to control when to have a bowel movement.

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What is an ileostomy?

An ileostomy is a surgically created opening in the small intestine through the . The purpose of an ileostomy is to allow stool to bypass the colon. An ileostomy may be temporary or permanent, depending on the medical reason for the surgery. Because of an injury or disease, such as or Crohn’s Disease, the colon may be surgically removed, along with the rectum and anus. Remember though, the colon’s main purpose is to absorb water and store stool. Your body can continue to function even without a colon. When a person has an ileostomy, stool is no longer eliminated through the anus. Instead, stool is eliminated through the ileostomy. An ileostomy does not have a sphincter muscle, so a person who has an ileostomy has no voluntary control over bowel movements. Instead, the person wears a disposable pouch to collect the stool. To construct an ileostomy, the surgeon brings part of the small intestine (ileum) through the abdominal wall. This opening on a person’s abdomen is called a stoma. The skin around the stoma is called the peristomal skin. Each person’s stoma is unique. Chances are your stoma will look different from another person’s stoma.

Stoma There are no nerve endings in the stoma, so the • Not painful stoma is not painful. The stoma is always red and • Always red and moist moist – somewhat like the inside of a person’s • May bleed easily mouth. The stoma may also bleed easily, especially if it is hit or rubbed. This type of minor, temporary bleeding of the stoma is normal. However, if the

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bleeding continues, or if the discharge (stool) from the stoma is bloody, you should contact your doctor or ET nurse. Your stoma will probably be swollen after surgery. It may take several weeks to shrink to its permanent size. If you have a temporary stoma, it may be a loop or a double barrel. A loop stoma may have a supporting device that is normally removed after two weeks.

Location of the stoma

Determining where the stoma will be placed on your abdomen is a very important part of the preparation for your surgery. Generally, an ileostomy is located on the abdomen in what is called the right lower quadrant. That is an area just below the waist, to the right of your navel, or belly button. Before your surgery, your ET nurse and your surgeon Right lower will determine – with you – the best location for quadrant your stoma. The stoma will be placed so you can see your stoma easily and take care of it yourself.

Stool from an ileostomy

Just after surgery, the stool from an ileostomy is generally a steady liquid type of drainage. However, as the small intestine begins to adapt, the stool will become thicker and more paste-like. Remember that the stool from an ileostomy comes directly from the small intestine, so the stool contains digestive enzymes that can be very irritating to your skin. Because of that, the pouch you wear must have a protective skin barrier to fit around your stoma.

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Ileostomy pouching systems

You can choose the kind of Hollister ileostomy pouch you want to use. For an ileostomy, a drainable pouch is recommended. The skin barrier on the pouch protects your skin and attaches your pouching system. Your pouch may be part of a one-piece or two-piece pouching system.

One-piece system

One-piece In a one-piece system, the skin barrier is already Drainable attached to the pouch. This means the one-piece Pouch is easy to apply. You just cut, peel and stick.

Two-piece system A two-piece system is the most versatile. It comes with a skin barrier that is separate from the pouch. The pieces snap together with a flange, a part which looks like a plastic ring. It is easy to unsnap the pouch and discard the pouch as often as you like. Pouches have clear or beige options. You can also select pouches that have a soft cover, such as the Two-piece Hollister ComfortWear™ panel, to increase your Drainable comfort. Pouch Hollister provides odour barrier pouches to increase your confidence when wearing a pouch.

Drainable pouch Skin Barrier Drainable pouches are best for managing your ileostomy. They have a clamp or closure, so emptying the pouch is quick and easy.

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Lifestyle tips: Skin care • Eat a balanced diet It is very important for the skin around the stoma • Eat slowly and chew (the peristomal skin) to remain healthy and free of your food well irritation. The peristomal skin should look just like • Drink plenty of water, juice or other fluids the skin elsewhere on your abdomen. each day To prevent skin irritation or other skin problems, • Add foods to your diet you must have a skin barrier and pouch which fit gradually, to see how properly. those foods agree with your system Each time you remove your skin barrier and pouch, look carefully at the peristomal skin. If you notice any swelling, redness or rash, you could have irritated skin. Sometimes – but not always – irritated skin is painful. If the problem persists for more than two pouch changes contact your ET nurse.

Diet Having an ileostomy does not mean that you will have to be on a special diet. In fact, many people who have bowel disease have been on restricted diets because of their disease; in many cases, an ileostomy allows a person to return to a normal diet. Immediately after your surgery, your doctor may prescribe a special diet. However, after your recovery period, you should be able to go back to a normal diet. With an ileostomy, your body will probably need more fluids than it did before your surgery. To avoid becoming dehydrated, you should drink plenty of water, juice, or other liquids each day. If you have a heart condition or kidney problem, check with your doctor before increasing fluid intake. There are some foods that can cause odour or gas in your system. If that is a concern for you, you may want to eat those foods in moderation. Also, you may want to avoid certain foods that

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are high in fibre. Sometimes, highly fibrous foods can cause blockages in the ileum as they will not easily pass through the stoma. These foods should be avoided for the first 6-8 weeks after surgery and then gradually introduced into the diet to assess how well they are tolerated.

Foods that are high in fibre: These should be avoided 6-8 weeks post-operatively: • Celery • Foods with non-digestible peels (such as apple, potato and grapes) • Coleslaw • Meats with casings (raw cabbage) (such as sausage, viennas and bologna) • Coconut • Mushrooms • Chinese vegetables • Nuts • Corn (mealies) • Popcorn • Dried fruits (such as raisins, dried figs and apricots)

Odour Odour is a major concern for people who are about to have ileostomy surgery. Today, pouches are made with odour-barrier film, so odour from the stool is contained inside the pouch. If the pouch is clean, and is applied properly, you should notice odour only when you are emptying or changing your pouch. Should you notice odour at any other time, check the pouch seal for leakage. You should empty your pouch when it is necessary and convenient; for many people, that means four or five times a day. Emptying your pouch regularly can help reduce the risk of leakage. Also, regular emptying can help avoid a bulge from a pouch that is too full.

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Sometimes, certain foods or medications can affect the odour of the stool. If odour is a concern for you, you may want to avoid foods that increase odour. If you have questions about the medications you are taking, ask your doctor or ET nurse.

Foods that can increase odour: • Asparagus • Eggs • Broccoli • Fish • Brussel sprouts • Garlic • Cabbage • Onions • Cauliflower • Some spices

Gas The amount of gas that a person’s system generates depends on the individual. If you had problems with excessive gas before surgery, you will likely have the same problems after surgery. Intestinal gas can sometimes be the result of swallowing air. Drinking carbonated beverages, smoking, chewing gum, and chewing with your mouth open can all increase the amount of air you swallow. Gas can be caused by food you eat. If gas is a problem for you, you may want to avoid certain gas-forming foods.

Foods and beverages that may increase gas: • Beans • Cauliflower • Beer • Corn (mealies) • Broccoli • Cucumber • Brussel sprouts • Mushrooms • Cabbage • Peas • Carbonated • Spinach beverages

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Lifestyle tips: Diarrhoea • If you get diarrhoea, increase the amount of For anyone, diarrhoea can be caused by an illness, fluids you drink or for a variety of reasons. With an ileostomy, you • If the diarrhoea continues, can still get diarrhoea, just as before your surgery. call your ET nurse or doctor If you get diarrhoea, there are some foods that you can eat that will help to thicken your stool. • Diarrhoea that lasts too long can cause Foods and beverages that may thicken your stool: dehydration • Apple sauce • Peanut butter (creamy not chunky) • Bananas • Pretzels • Buttermilk • Rice • Cheese • Tapioca pudding • Marshmallows • Toast • Milk (boiled) • Yoghurt • Noodles (any type)

Also avoid foods and beverages that may cause loose stool.

Foods and beverages that may cause loose stool: • Beer or • Green beans other alcohol • Broccoli • Prunes or prune juice • Fresh fruits • Spicy foods (except bananas) • Grape juice • Spinach

Dehydration There is the potential for ileostomy patients to become dehydrated. This is because the stool from the ileostomy is watery and there is no working colon to absorb additional fluids. It is recommended that you drink between 10 and 12 glasses of fluid a day and importantly that you

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Lifestyle tips: respond to your thirst. If you feel thirsty, you need • Choose a patterned swim a drink. suit instead of one with a solid colour Signs of dehydration • Men can wear athletic • Thirst • Weakness supporters • Women can wear panty • Dry mouth and • Dizziness while hose or girdles mucous standing membranes • Darkened urine • Tingling hands and feet

Alcohol Alcohol can still be taken, but in moderation. Over indulgence in alcoholic beverages may cause IMPORTANT: * If you have an ileostomy, problems with the emptying or changing of the it is important to get pouch. Carbonated drinks such as beer may cause medical advice regarding an increase in the amount of gas passed. the necessity of having intramuscular Vitamin B12 replacement. Medication With an ileostomy, some medications – including large tablets, coated pills, time release capsules, and birth control pills – may pass through your system without being completely digested. Always tell your doctor, dentist and pharmacist that you have an ileostomy. They can generally prescribe, or help you to select, alternative forms of medication. After your surgery, never take laxatives. For a person who has an ileostomy taking laxatives can cause a severe fluid and electrolyte imbalance. Some medications may change the colour, odour or consistency of your stool. Non-prescription medications, like antacids, can cause constipation or diarrhoea. Antibiotics may make your stool thinner than normal, and may even cause diarrhoea.* If you have questions about any medications you are taking, ask your doctor or ET nurse.

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Lifestyle tips: Bathing or showering • When flying keep your ileostomy products with With an ileostomy, you can shower or bath just as you in your carry-on bag, you did before. Soap and water will not flow into not in your checked your stoma or hurt it in any way. You may choose luggage to shower or bath with your pouch on or off – the • Air pressure in aircraft choice is yours. Because soap residue can will not affect your pouch sometimes interfere with how well the skin barrier • Fasten the seat belt or adhesive sticks to your skin, avoid soap that above or below your stoma leaves a residue on your skin. Choose a soap or • Do not leave your cleanser that is residue-free. ileostomy products in a hot car – the adhesives can melt Clothing • When you are away from home for extended After ileostomy surgery, many people worry that periods of time, know the pouch will be visible under their clothing. where to contact a Some people think they won’t be able to wear local ET nurse “normal” clothes, or that they will have to wear • General travellers guidelines to avoid an clothes that are too big for them. The fact is you upset stomach when should be able to wear the same type of clothes travelling, still apply to you wore before your surgery. Also, today’s ostomates pouches are so thin and fit so close to the body, chances are no-one will know you are wearing a pouch – unless you tell them.

Returning to work and travelling As with any surgery, you will need to allow some recovery time. Recovery from this type of surgery can take from six to eight weeks. You should check with your doctor before returning to work. After your recovery, you should be able to return to work, or travel just about anywhere. Your ileostomy should not limit you. Ileostomy products are available through medical or surgical retailers in nearly every country in the world. Of course, it is always a good idea to take your own supplies with you when you travel – and always take more than you think you will need.

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Lifestyle tips: If you are going to be travelling in a foreign • Before swimming, it is a country, it is a good idea to take anti-diarrhoea good idea to empty your medication with you. Ask your doctor for a pouch prescription. • You may need to change your pouch more often if you wear it in a jacuzzi Exercise and sports or sauna An ileostomy should not prevent you from • You may add tape to the edges of your skin barrier exercising or from being physically active. before swimming Other than extremely rough contact sports or very heavy lifting, you should be able to enjoy the same type of physical activities you enjoyed before your surgery. People who have ileostomies are able to swim, water ski or snow ski, play golf, tennis, volleyball, or softball, hike, sail or jog just as well after their surgery as they did before. You may need to take extra care to increase your fluid intake when taking part in sport or in hot weather. Heat and moisture can reduce the wear time of the pouch system.

Sex and personal relationships Because ileostomy surgery is a body-altering procedure, many people worry about sex and intimacy, and about acceptance by their spouse or loved one. For people who are dating, a big concern is how to tell someone about the ileostomy. It is important to remember that supportive personal relationships can be major sources of healing after any type of surgery. It is also important to let your partner know that sexual activity will not hurt you or your stoma. Ileostomy surgery affects both partners in a

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Lifestyle tips: relationship, and it is something to which both • Empty your pouch before partners must adjust – each in his or her own way. having sexual relations The key, of course, is understanding and • Sexual activity will not communication. hurt you or your stoma If having children is a concern, you’ll be happy to • During sex, you may prefer to wear a smaller know that after a satisfactory recovery, it is still pouch than usual possible for a woman who has a stoma to have • Intimate apparel can children. Also, many men have become fathers hide the pouch and keep after having ileostomy surgery. If you have it close to your body questions about pregnancy, do not hesitate to ask • A beige pouch or pouch your doctor or your ET nurse. cover can help to hide the pouch contents Religion The Islamic faith has definitive rules that must be followed in preparation for and during the time of prayers. The question has arisen about the wearing of a pouch during the time of prayer. According to Chairman of the Fatawa Commission of AL-AZHAR, Abd Allah Abd-Alkalik Al Mishad, any person who has a stoma is considered to have a legitimate excuse, as a stoma patient cannot replace the pouch for each prayer. The patient may, at the onset of the prayer interval, perform absolution and then pray as many times as he wishes during this prayer interval. At the onset of a new prayer interval, the absolution performed in the last interval is no longer valid and the stoma patient should perfom a new absolution for the new prayer interval and so on (for each of the five prayer intervals). Reference: J.W. Birkbeck (USA) 2001 Fatwa about preparation for prayer for Muslim ostomates.

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Routine care of your ileostomy When your doctor says it is appropriate, you can resume your normal activities. You will get used to your Hollister pouch system and develop a schedule that fits your lifestyle. Here are a few guidelines for successful care of your ileostomy: • Empty your pouch when it is one-third to one- half full • Replace the skin barrier, the waxy part that sticks to your skin, every three to seven days • If you use soap, make sure your soap does not contain oils or lotions that can interfere with adhesives • Rinse your skin with water, and dry it completely before you apply the new pouch • After you apply your skin barrier, hold it against your body for between 30 and 60 seconds. The pressure and warmth help activate the adhesive • If you wear a two-piece system, try putting your skin barrier on at an angle, making a diamond shape, for a smoother fit • You can shower or bath with your skin barrier and pouch in place, or you can remove them before bathing. Water will not harm or flow into your stoma • If your skin becomes red and sore, or your pouch is not staying in place, be sure to see your doctor or ET nurse

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Call your ET nurse if you notice the following: • Skin irritation • Recurring leaks around your pouch or skin barrier • Excessive bleeding of your stoma • Blood in your stool • A change in the colour or consistency of your stool • A bulge in the skin around your stoma • A stoma that appears to be getting longer

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Glossary

Anus The opening of the rectum; the last section of the digestive tract where waste is expelled. Colon Another term for the large intestine or last portion of the . Ileostomy An ostomy (surgical opening) created in the ileum, part of the small intestine. Enzymes Digestive enzymes break down the food we eat so it can be used as a source of nutrition. Large intestine Another term for the colon or the last part of the gastrointestinal tract. One-piece The skin barrier is attached to the pouch. Peristomal skin The skin around the stoma. Pouch The bag that collects the discharge from the ostomy. Rectum The lower end of the large intestine, leading to the anus. Skin barrier Part of the pouching system; it protects your skin and adheres to your pouch. Small intestine The section of the gastrointestinal system that first receives food from the stomach. Divided into three sections: duodenum, jejunum and ileum. Sphincter A muscle that surrounds and closes an opening. A stoma does not have a sphincter. Stoma Another term for ostomy, a surgically created opening. Stool Waste material from the bowel. Also known as faeces or bowel movement. Two-piece The skin barrier is separated from the pouch. Both pieces are needed to create a complete pouching system.

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Toll Free: 0800 002 909 Hollister South Africa (Pty) Ltd www.hollister.com PO Box 5097 Halfway House www.ostomyworld.com Johannesburg 1685 Tel: +2711 314 4898 Fax: +2711 314 5365 Hollister and logo, are trademarks of Hollister Incorporated. Toll Free: 0800 002 909 © 2004 Hollister S.A. E-mail: [email protected] 000/2169/10/4 COMMUNICATIONS GRANT-MARSHALL