Contents Facts About Colostomy The Normal Digestive System Types Of Colostomies Caring for a Transverse Colostomy Caring for a Descending or Sigmoid Colostomy Colostomy Management Helpful Hints Colostomy Complications Living with a Colostomy For Parents of Children with Colostomies Resources Available Glossary

A colostomy is a lifesaving surgery that lets a person enjoy a full range of activities, including traveling, sports, family life and work, even though they have a stoma and may wear a pouching system.

Colostomy surgery is performed for many different diseases and conditions. Some colostomies are done because of malignancy (cancer). In children, they may be created because of birth defects. Colostomies can be temporary or permanent. Some colostomies appear large, others small. Some are on the left side of the abdomen, some are on the right, and some in the middle.

Think of your colostomy’s function as you do of a natural bowel movement. You still have the same bowel, just less of it. The real change is having a bowel movement from an opening made in the abdomen. Learning how to care for your colostomy will help you adjust.

There are several ways to take care of your colostomy. As colostomies differ, so does taking care of them. This booklet offers suggestions and ideas for managing a colostomy. Please read the following pages carefully. The included glossary will help explain the technical terms – use it as a guide rather than a textbook. Discuss ideas with a doctor or an ostomy nurse, a nurse who specializes in wound, ostomy, and continence issues, then adapt them to your situation.

There are many ways to gain a greater understanding of your life with a colostomy. This guide will give you helpful facts. Your doctor, ostomy nurse, or other nurses are important sources of information and support. An ostomy visitor is a special source of help . The visitor is a person who has had colostomy surgery. He or she is well qualified to answer your questions and share tips on living with an ostomy.

Taking part in an ostomy support group may also help. A support group allows you to share your feelings and ask questions. It also allows you to share your successful adjustment with others who may need the benefit of your experience. If you would like to see a visitor or take part in a support group, ask your doctor, ostomy nurse, or other nurses.

Facts About Colostomy

A colostomy is created when a portion of the large intestine is removed or bypassed. The remaining portion of the functioning large intestine (colon) is brought through the abdominal wall, creating a stoma. This results in a change of normal body function to allow elimination of bowel contents following disease, injury, or birth defect.

When certain conditions are present in the large intestine, it may be necessary to give that portion a rest. This is done by preventing stool from reaching it. To do this, a temporary colostomy is created so that portion can heal. The healing process may take weeks, months or even years, but eventually the temporary colostomy is reversed (removed) and normal bowel movements are restored.

When the end portion of the colon or the rectum becomes diseased, a permanent colostomy will need to be constructed. The diseased portion must be totally removed or permanently bypassed. A permanent colostomy provides an exit for stool that will not be closed at any time in the future.

Where the colostomy is located on the abdomen depends on which part of the colon is used to create it. The ostomy nurse or surgeon will determine the right location for your stoma. The way the stoma will look depends on the type of colostomy and on individual differences in the human body. While the stoma may be quite large at first, it will shrink gradually to its final size in 6 to 8 weeks.

When you look at a stoma, you are actually looking at the lining (the mucosa) of the intestine. It is warm and moist and secretes small quantities of mucus. Unlike the anus, the stoma has no valve or shut-off muscle. For this reason, you will not be able to control of the passage of stool.

The colon’s work primarily is to extract water from, transport and store stool. There are two major types of movement activities in the colon: peristalsis and mass reflex. These movements occur throughout the different parts of the colon, but are not noticed. Peristalsis mixes and kneads the food and extracts water, thus forming the end product, stool. When stool collects in a portion of the colon, muscles in that part relax and stretch to accommodate it. Pressure builds as the limit of stretching approaches. At this point, a mass reflex, stronger than peristalsis, propels the stool into the next portion of the colon. From there, it moves into the rectum. This occurs automatically several times a day and usually follows a meal or drink.

The end part of the digestive tract is the rectum and anus. Special nerve pathways to the brain make us aware when the stool reaches this section. Only then is the digestive process subject to our will. As the stool enters the rectum, we feel the desire to have a bowel movement. The anal sphincter allows us to control this desire. Unlike the digestive tract, it contracts or relaxes at our will.

The Normal Digestive System

Although a colostomy creates an important change for a patient, the body’s chemistry and digestive function are not significantly altered by it. To appreciate how the body can function with a colostomy, look at how the digestive tract normally functions.

Small Intestine: Approximately 20 feet long, consisting of:

• Duodenum (first part) 10-12 inches beginning at the outlet of the stomach.
• Jejunum (second part), about 8-9 feet.
• Ileum (third part) about 12 feet, connected to the large intestine at the cecum.
• Food nutrients are digested and absorbed in the small intestine as food is moved through by peristalsis.

Large Intestine: Approximately 5-6 feet long, consisting of:

• Cecum – contains the ileocecal valve, which prevents reflux into the ileum; contents are highly acidic liquid.
• Ascending colon – contents are acidic liquid.
• Transverse colon – contents are less acidic liquid.
• Descending/sigmoid colon – contents become more formed.
• Rectum – formed stool.

The primary functions of the large intestine are absorption of water and electrolytes, transport of stool by peristalsis, and storage of digestive waste until it is eliminated from the body.

Since nutrients are absorbed in the small intestine, a colostomy does not affect the body’s ability to be nourished. When a colostomy interrupts the passage of stool, storage becomes more difficult. The higher up in the colon the colostomy is made, the less time the bowel has to absorb water and the more liquid (or soft) the stool is likely to be. Therefore, a colostomy in the transverse colon will discharge a softer and more voluminous stool and will require the use of a collection pouch.

A colostomy far down in the colon, near the rectum, will discharge stool that has been in the intestine a longer time and barring the effects of illness, medicines or other forms of treatment, may produce a more formed stool. Some individuals with colostomies find that they are able to pass this stool at regulated times with or without the help of irrigation (an enema through the stoma).

After the operation, if the rectum is intact, patients may feel urges and even have some discharge from the anal area. It may continue to secrete mucus that can be harmlessly passed whenever the urge occurs.

Care of the Posterior Wound

In some patients, the rectum and anus are removed and there will be a posterior wound. Care of the posterior wound is based on simple hygiene and the use of dressings or pads to collect and contain any secretions. Persistent infections or drainage may be treated by antibiotics or sitz baths. Your doctor should outline a treatment to follow.

Types of Colostomies

A colostomy can be temporary or permanent and can be in any part of the large intestine depending upon the cause for the surgery. The types of colostomies are usually identified by the location of the stoma: ascending, transverse, descending/sigmoid.

Ascending Colostomy

The ascending colostomy is located on the right side of the abdomen. The discharge is very liquid. A drainable pouch is worn for colostomies of this type. This type of stoma is rarely used since an ileostomy is a better stoma when the discharge is liquid. When a colostomy is located in the right half of the colon, only a short portion of colon remains. Caring for an ascending colostomy is similar to caring for a transverse colostomy.

Transverse Colostomy

Indications:

• Diverticulitis.
• Trauma (injury).
• Birth defects.
• Cancer/descending or sigmoid colon.
• Bowel obstruction.
• Paralysis.

Discharge:

• Semi-solid.
• Unpredictable.
• Contains some digestive enzymes.

Management:

• Skin protection.
• Drainable pouch.
• Closed-end pouch for convenience or special moments.

The transverse colostomy is in the upper abdomen, either in the middle or toward the right side of the body. Diverticulitis, inflammatory bowel disease, cancer, obstruction, injury or birth defects can lead to a transverse colostomy. This type of colostomy allows the stool to exit from the colon before it reaches the descending colon.

When conditions such as those listed are present in the lower colon, it may be necessary to give the affected portion of the colon a rest. A transverse colostomy may be created for a period of time to prevent stool from passing through the area of the colon that is inflamed, infected, diseased or newly operated on, thus allowing healing to occur. Such a colostomy is usually temporary. Depending on the healing process, the colostomy may be necessary for a few weeks, months, or even years. Eventually, the colostomy is likely to be closed and normal bowel function restored.

A permanent transverse colostomy is made when the lower part of the colon must be removed or permanently rested. This may also be the case if other health problems make it unwise for the patient to have further surgery. Such a colostomy provides a permanent exit for stool and it will not be closed at any time in the future.

There are two types of transverse colostomies: loop transverse colostomy and double-barrel transverse colostomy.

Loop colostomy: An entire loop of bowel is brought to the skin surface and opened to create a distal, or nonfunctioning end. The distal side is also called a mucus fistula because it produces normal mucus secretions . The proximal or functioning end expels stool. Patients with intact rectums may experience passage of mucus through the rectum.

Double-barrel: This is similar to a loop colostomy, except the bowel is divided into two stomas, a proximal and a distal stoma. The distal stoma functions as a mucus fistula. The proximal stoma expels stool. Double-barrel stomas may be a challenge to manage because the stomas are so close to each other.

Caring for a Transverse Colostomy

The discharge from the transverse colostomy is semi-solid, unpredictable, and contains some digestive enzymes. The management of the transverse colostomy consists of skin protection and a drainable pouch. A closed-end pouch can be used for convenience during special activities.

Skin irritation can usually be prevented by having a correctly fitted pouch and by using peristomal skin protection. The consistency of stool is influenced to some extent by what you eat. Gas and odor are part of the digestive process and can be somewhat controlled by what you choose to eat. Certain foods tend to produce more gas and odor (i.e., onions, beans, cabbage, broccoli, eggs, fish).

Emptying the pouch several times a day reduces the risk of leaks and bulges underneath your clothing. A one-piece pouch should not be changed more than once a day to prevent skin irritation. A two-piece pouch (wafer/pouch) should be changed every 3 to 5 days.

Descending or Sigmoid Colostomy

Indications:

• Cancer of rectum or sigmoid colon.
• Diverticulitis.
• Trauma (injury).
• Congenital defects.
• Bowel obstruction.
• Paralysis.

Discharge:

• Resembles normal bowel movements.
• Regulated in some people, not in others.

Management: Natural evacuation or irrigation. Protective cover or closed-end pouch if regulated. If not regulated, use open-end drainable pouch.

Located on the lower left side of the abdomen. Generally, the discharge is firm and can be regulated. The sigmoid colostomy is probably done the most frequently of all the colostomies.

The stool of a descending or sigmoid colostomy is firmer than that of the transverse colostomy and does not have the caustic enzyme content. At this location, elimination may occur on a reflex basis at regular, predictable intervals. The bowel movement will take place after a considerable quantity of stool has collected in the bowel above the colostomy. Spilling may happen between movements because there is no anus to hold the stool back. Many people use a lightweight, disposable pouch for security. A reflex will set up quite naturally in some people. In others, mild stimulation, such as juice, coffee or food is effective for elimination. Others may prefer the irrigation method of management.

While many descending and sigmoid colostomies can be managed to move regularly, others cannot. You must realize that satisfactory management, with or without stimulation, is likely to happen only in those people who have had regular bowel movements before they became ill. If bowel movements have been irregular in earlier years, it may be quite difficult, or impossible, to have regular, predictable colostomy function. Spastic colon or irritable bowel are conditions in which the patient may have bouts of constipation or loose stool. A person, who has had such a condition in the past, before he became ill, may not achieve regularity.

It is often said that a person must have a bowel movement every day. Actually, this varies from person to person. Some people have two or three movements a day, others have one every 2 or 3 days or even less often. You must judge by what is usual for you, not what is usual for others.

Caring for a Descending or Sigmoid Colostomy

Natural Evacuation

The descending or sigmoid colostomy can be managed by natural evacuation, that is, just let it happen naturally. This method will require a collection pouch to be worn at all times. Many individuals with a descending or sigmoid colostomy will return to a predictable bowel movement pattern. (see More Information About Colostomy Management)

Irrigation

Irrigating (an enema through the stoma) to have regulated bowel movements is up to the individual. It should be discussed with your doctor or ostomy nurse before deciding. A doctor or ostomy nurse should tell or show you how to irrigate.

You will need specific ostomy supplies for this procedure that will include:

1. a plastic irrigating container with a long tube, and a cone to introduce water into the colostomy,
2. an irrigation sleeve to direct the output into the toilet,
3. an adjustable belt to attach the irrigation sleeve and
4. a tail closure for the end of the irrigation sleeve. Then a closed-end pouch or stoma cover can be worn until the next irrigation.

Irrigation Information Only for Those Who Irrigate

• Choose a time of day when you will not be interrupted.

• Irrigation may be more satisfactory if it follows a meal or hot/warm drink.

• Instill 1,000 cc (one quart) of lukewarm (not hot) water into your irrigating container.

• Hang the container at such a height that its bottom will be at the level of your shoulder when you are seated.

• Sit up straight on the toilet or on a chair next to the toilet.

• Attach the adjustable belt to the plastic irrigation sleeve and place the bottom end of the sleeve in the toilet bowl.

• Wet or lubricate the end of the cone with water or water-soluble surgical lubricant.

• To remove air bubbles from the tubing, release the clamp on the tubing and let a small quantity of water escape into the sleeve. Reclamp the tubing, insert the cone into the colostomy to a snug fit, but do not apply too much force. Again, release the clamp on the tubing and allow the water to flow in.

• The water must go in slowly. You may shut the clamp or press the walls of the tube together to slow or stop the water flow. It takes about five to ten minutes to drip in 1000 cc of water. Hold the cone in place for at least an additional 15 seconds.

• The amount of water you need depends on your own body. Begin with 1000 cc and adjust to obtain successful returns.

• You should not experience cramps or nausea while the water flows in. Both these symptoms indicate a flow that is too rapid, too much water, or water that is too cold. Once the water has been instilled, a bowel movement-type cramp may precede the return of the water and stool. (You might feel nauseated the first time.)

• Remove the cone and attach the irrigation sleeve over the stoma. Returns will come in spurts over a period of approximately 45 minutes. As soon as the major portion of stool has been expelled, you may clip the bottom of the irrigating sleeve to the top with a clasp. You may move around, bathe or do anything you wish to pass the time.

• In time you will know when all the water and stool has been expelled. A squirt of gas may indicate completion, or a quiet appearance of the stoma may be a sign.

• If the complete irrigation always takes much more than an hour, ask your doctor or ostomy nurse to evaluate your procedure.

It is best to seek guidance from an ostomy nurse before beginning this process.

Colostomy Management

Pouches

Pouches come in a variety of styles and sizes that do not show under your clothing.They are made of disposable materials and designed to be worn once and then discarded. Many individuals with colostomies wear a pouch. For example, those who have a transverse colostomy, those who do not wish to irrigate and those who have some output between irrigations.

Basically, all pouches do the same job. They collect stool that may expel expectedly or unexpectedly. Some are open at the bottom for easy emptying. Others are closed and are removed when filled. Others allow the adhesive face plate or flange to remain on the body while the pouch may be detached, emptied or replaced. Pouch flanges are available in both convex and flat surfaces. Everyone, including those who irrigate, needs some type of stoma pouch on hand, if only for emergency purposes.

Stoma Covers/Caps

A gauze-type covering can be placed over the stoma and held in place with a water-proof tape or underclothing. Stoma caps are also available for purchase. This method may be used when colostomies are regulated. Storage Keep all your equipment together on a shelf or in a small box in a cool dry

area. Excessive heat may cause plastic items and skin care products to deteriorate.

Ordering Supplies

Reorder supplies several weeks before you expect them to run out, to allow enough time for delivery. It is best to avoid stockpiling supplies because the products have a recommended shelf life and are influenced by changes in temperature. You do not have to use sterile supplies. The stoma and surrounding skin are not sterile and require only cleanliness. Ostomy supplies can be ordered from pharmacies, medical supply distributors, and on the Internet (search words: ostomy supplies). The phone book is a good resource.

Pouch Seal

In addition to the type of seal and proper fit, several other factors can influence how long the pouch will stay sealed. These include weather, skin peculiarity, scars, weight changes, diet, activity, body contours near the stoma and the nature of the stool.

Perspiration during the summer months in warm, humid climates may shorten the number of days you can wear the pouching system. Moist, oily skin may reduce adhesion time.

Weight changes will also affect the wearing time of your pouch. Weight gained or lost after colostomy surgery changes abdominal contours. You may need to modify your pouching system.

Physical activities will have some influence on the length of time you can wear your pouch. Swimming, very strenuous sports or work that causes perspiration may cut down on wearing time.

Helpful Hints

Protecting the skin around the stoma

A colostomy that discharges firm stool usually causes few, if any, skin problems. If the stool is loose, as is often the case with transverse colostomies, it can irritate the skin. Here are some ways to prevent skin problems:

• Use the correct size of pouch opening and skin barrier opening. Allow no more than 1/8 inch larger than the stoma.

• Use skin prep products which leave a film barrier on the skin to protect from irritation caused by digestive enzymes or adhesives. They also help the wafer adhere.

• Change the pouch regularly to avoid leakage and skin irritation. It is recommended to change the pouch if itching and burning occurs.

• Remove the pouch by gently pushing your skin away from the pouch. This helps prevent excessive skin irritation.

• Keep the skin clean with water. If necessary, use a mild soap and rinse very well. This can be done in the shower or tub. Make sure the skin is dry and cool before applying the pouch or stoma covering.

• Watch for sensitivities and allergies to adhesives, skin barriers, tape or pouch material. They can develop weeks, months, or even years after use of a product since the body can become gradually sensitized. If you have a skin irritation that is caused by the pouch material, you might try a pouch cover. These are available from several manufacturers or you can make your own.

Flatulence (Gas)

During the early weeks and months after surgery, you may experience excessive gas. This will lessen after the bowel has had time to heal and you have resumed a regular diet. To help prevent excessive gas, eat leisurely in a relaxed atmosphere with your mouth closed and chew well. Carbonated drinks and chewing gum should be used in moderation. Certain foods, such as cucumbers, cabbage, broccoli, onions, fish and dried beans may cause intestinal gas. Large amounts of vegetables or sweets can create gas. Constipation or unsatisfactory irrigation may also cause gas.

If you continue to be troubled, write down what you eat and how it is prepared. From this journal you may learn what causes the problem. To muffle noisy discharges of gas, put your hand discreetly over the stoma. Eat regularly and avoid gassy foods.

Odor

Certain foods tend to produce more gas and odor than others, i.e., onions, beans, cabbage, broccoli, eggs and fish. Some medicines such as vitamins and antibiotics also cause stools to have odor. Discuss this problem with your doctor. He or she may be able to prescribe another type of medication.

Some options for odor management include oral products (bismuth subgallate) and deodorant drops in the pouch. These products are more effective with transverse colostomies because of the liquid consistency of the output.

Constipation and Diarrhea

Constipation is often the result of an unbalanced diet, too small an intake of food or liquids or certain medications. These are matters to talk over with your ostomy nurse or doctor. If you have had constipation problems in the past, before surgery, remember how you solved them and try the same methods. DO NOT use laxatives without asking your physician.

Diarrhea is usually a warning that something is not right. Diarrhea is defined as frequent or watery bowel movements in greater amounts than customarily experienced. Diarrhea must be distinguished from loose bowel movements. Loose bowels are common in transverse colostomies. This is due to the shortened length of the colon and is not a sign of sickness or disease.

If you have persistent diarrhea or constipation, you should talk with your doctor or ostomy nurse. Discuss your diet, your eating schedule and any medicines you might be taking. Something may be prescribed to help manage the situation. Remember, you need a well-balanced diet and enough fluids to obtain good output.

Occurrence of the “Phantom” Rectal Sensation

“Phantom” rectal sensation is similar to the “phantom” limb sensation of amputees who feel as if their removed limb is still there. It is normal for you to feel as if you need to evacuate. This can occur for years after surgery. If the rectum has not been removed, one may also have this feeling and may pass mucus when sitting on the toilet. Some who have had their rectum removed say that the feeling is relieved somewhat by sitting on the toilet and acting as if an evacuation is taking place.

Colostomy Complications

The most common problem after colostomy surgery is the development of a hernia around the stoma site. A hernia is a bulge in the skin around the stoma and it causes difficulty irrigating and partial obstruction. Avoid heavy lifting immediately after surgery.

Many of these problems can be avoided if the ostomy nurse marked the stoma site before surgery. The preferred site lies within the rectus abdominus muscle near the midline. The ostomy nurse is also helpful in managing complications should they arise.

Medical Emergencies

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

• Severe cramps lasting more than 2 or 3 hours.
• Unusual odor lasting more than a week.
• Unusual change in stoma size and appearance.
• Obstruction at the stoma and/or prolapse of the stoma.
• Excessive bleeding from the stoma opening, or a moderate amount in the pouch in several emptyings. (Note: Eating beets will lead to some red discoloration.)
• Severe injury or cut to the stoma.
• Continuous bleeding at the junction between stoma and skin.
• Watery discharge lasting more than 5 or 6 hours.
• Chronic skin irritation.
• Stenosis of the stoma (narrowing).

Being Hospitalized Again

Take your ostomy supplies with you as the hospital may not have your brand. You may find that you are the expert on colostomies, especially if you are in a hospital where ostomy patients are rare or if you go for a condition not related to your ostomy. If you are in doubt about any procedure, ask to talk to your doctor. Ask to have the following information listed on your chart: 1) type of ostomy or continent diversion 2) whether or not your rectum has been removed or is intact 3) details of your management routine and products used.

Living With A Colostomy

Learning to live with a colostomy may seem like a big undertaking. It is similar to other major changes in your life. Beginning a new job, moving to another city, marriage and having children are all examples of adapting to a new way of life. Initially, you have to adjust to the unfamiliar aspects of these experiences and this may take some time. Having a positive outlook on life, patience and a sense of humor are keys to adjusting to any new situation.

There are times after surgery when you may feel discouraged. You may feel alone and isolated. Because the whole experience is so new to you, you may feel awkward, frustrated, and uncertain. Feeling discouraged is normal. You might cry, be hostile or 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 these feelings. You may discover new hope and encouragement.

Your social life can be as active as it was before surgery. You can enjoy traveling, sporting events, eating at restaurants, or whatever you enjoyed before. The first time you go out of the house after surgery, you may feel as if everyone is staring at your pouch even though it is not visible under your clothing. You may feel your pouch on your body, but no one can see it. Keep these questions in mind: Did you know what a colostomy was, or where a stoma was located, or what it looked like, before you had surgery?

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

Telling Others About Surgery

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

If you have children, answer their questions simply and truthfully. A simple explanation will be enough for them. Once you have explained what a colostomy 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 dispel any misconceptions they might have. They will accept your colostomy much the same way you do.

If you are considering marriage, discussions with your future spouse about life with an colostomy and its effect on sex, children and family acceptance will help to alleviate misconceptions on the part of the spouse. Attending ostomy support group meetings together will also be helpful. Talking to other couples, in which one partner has a colostomy, will provide an experienced viewpoint.

Clothing and Appearance

You need no special clothing because colostomy pouches are fairly flat and inconspicuous. The pressure of undergarments with elastic will not harm the stoma or prevent function of the bowel; however, tight waist bands directly on the stoma should be avoided.

If you were ill 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 the support and security you need. Panty hose are also comfortable. A simple pouch cover adds comfort by absorbing perspiration and keeps the pouch from resting on the skin. Men can wear either boxer or jockey-type underwear.

Eating and Digestion

After healing is complete and the ostomy is functioning normally, most people with colostomies can return to a regular diet. If you have a special diet because of heart disease, diabetes or other health problems, you should ask your doctor about a diet that will work with both that problem and your colostomy.

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

• Doctors often have their patients follow a low residue diet the first weeks after any abdominal surgery. This includes only foods that are easily digested and excludes raw fruits and vegetables. Be sure to find out when you can start a regular diet. Eat all foods that you like except those restricted by your doctor.

• Try one food a day that you have not eaten since surgery. Eat small portions at first, then gradually increase the amount. If a small serving gives you cramps or diarrhea, eliminate that food from your diet temporarily and try it again in a few weeks.

• Drink plenty of liquids. A minimum of 5 to 6 eight oz. glasses of water per day is recommended. Dehydration and loss of electrolytes (salts and minerals) are possible if not enough fluids are consumed in a day. Increase your fluid intake with hard work or hot climates.

Returning to Work

As your strength returns, you can go back to your regular activities. If you return to work, you may wish to confide in your employer or a good friend. Being open about your colostomy will help educate others. Keeping it a complete secret may cause practical difficulties.

Persons with colostomies can do most jobs; however, heavy lifting may cause a stoma to herniate (bulge outward) or prolapse (fall outward). A sudden blow in the pouch area could cause the barrier or pouch to shift and cut the stoma. Still, persons who have colostomies do heavy lifting, such as firemen, mechanics and truck drivers. Belts may be worn to support the abdomen when lifting. There are athletes who have stomas. 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 capabilities.

Employability and insurability are issues for some individuals. If these issues develop, seek help from healthcare professionals and/or talk with others who have found solutions to these issues.

Intimacy and Sexuality

Sexual relationships and intimacy are important aspects of your life that should continue after ostomy surgery. Your attitude is a key factor in re-establishing sexual expression and intimacy. A period of adjustment after surgery is to be expected. Sexual function in women is usually not impaired, while sexual potency of men may sometimes be affected, usually temporarily. Discuss any problems with your doctor and/or ostomy nurse.

Sexuality concerns should be discussed openly between you and your partner. It is likely that your partner will have anxieties about sexual activities due to lack of information. An intimate relationship is one in which two people communicate openly and honestly.

The first time you become intimate after surgery things may not go perfectly. Men may have trouble getting and keeping an erection and women sometimes have pain during intercourse. These conditions will usually improve with time. Your interest in sex will gradually return as your strength is regained and management issues are mastered. Body contact during sexual activities will usually not harm the stoma or loosen the pouch from the abdomen. Special garments are available that can be worn to secure or hide the pouch. Mini pouches or stoma caps are also available for use during intimate times.

Ostomy surgery may present more concerns for single individuals. When to tell someone special depends upon the relationship. Brief casual dates may not need to know. If the relationship grows and leads to intimacy, the partner needs to be told about the ostomy prior to a sexual experience.

Pregnancy in women who have had colostomy surgery is not uncommon. Before pregnancy is considered, it should be discussed with your doctor. The colostomy 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, other health problems that you may have must be taken into consideration and discussed with your doctor.

Participating in Sports

An ostomy should not limit your participation in sports. There are a few precautions, however. Many doctors do not allow contact sports because of possible injury to the stoma from a severe blow or because the pouching system may slip. However, these problems may be overcome with special protection. Weight lifting could result in a hernia at the stoma. Check with your doctor about such sports. Indeed, people with ostomies are distance runners, weight lifters, skiers, swimmers and participate in most other types of athletics.

Bathing and Swimming

You may bathe with or without your pouching system in place. If you wish to take a shower or bath with your pouch off, you can do so. Normal exposure to air or contact with soap and water will not harm the stoma and water does not enter the ostomy opening. You can also leave your pouch on while bathing.

Remember these points:

• You can protect the barrier by taping the edges with waterproof or paper tape.
• You may want to choose a swimsuit that has a lining to provide a smoother profile.
• Women may wear stretch panties designed for swimsuits.
• Men may want to wear a support garment sold in men’s underwear departments or athletic wear departments.
• Men may prefer to wear a tank top and trunks, if the stoma is above the belt line.
• For swimming, empty your pouch beforehand and remember to eat lightly.
• For sanitary reasons, you should always wear a pouch when you go swimming.

Travel

All methods of travel are open to you. Many people with colostomies travel extensively, including camping trips, cruises and plane excursions around the world. Since you should prepare for travel, here are some suggestions:

• Take along enough supplies to last the entire trip plus some extras. Double what you think you may need, because they may not be easy to get where you are going. Even if you don’t expect to change your pouch, take along everything you need to do so. Leave home fully prepared. Find out if and where supplies are available before a long trip.

• Seat belts will not harm the stoma when adjusted comfortably.

• When traveling by car, keep your supplies in the coolest part. Avoid the trunk or back window ledge.

Traveling by Plane

Checked luggage sometimes gets lost. When you travel, carry an extra pouching system and other supplies on the plane with you. Small cosmetic bags with plastic linings or shaving kits work well. These should be placed in your carry-on luggage. Place scissors in your checked luggage to avoid security problems.

To avoid problems when going through customs or luggage inspection, have a note from your doctor stating that you need to carry ostomy supplies and medication by hand. Further problems might be avoided by having this information translated into the language or languages of the country (countries) you are visiting.

Traveling Abroad

In foreign countries, traveler’s diarrhea is a common disease of tourists, whether you have an ostomy or not. The most common cause of diarrhea is contaminated water and/or food. It may also be caused by mere changes in water, food or climate. It is wise to avoid unpeeled fruits and raw vegetables.

Persons with colostomies lose water and minerals quickly when they have diarrhea. For this reason you may need medication to stop the fluid and electrolyte loss. Your doctor can give you a prescription for medication to control diarrhea. It should be filled in your home state, since the prescription may not be valid elsewhere. Be sure drinking water is safe. If the water is not safe, do not use the ice either. Bottled water or boiled water is recommended. It is suggested to always use safe water for colostomy irrigations.

Before traveling abroad, get a list of the current English-speaking doctors in various foreign cities who charge a standard fee. The International Association of Medical Assistance to Travelers (IAMAT) publishes lists of English-speaking physicians in over 2,500 cities around the world, 716-754-4883.

For Parents of Children with Colostomies

If you are a parent of a child with an colostomy, 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 colostomy was necessary to save your child’s life. You may have felt shock. You may have asked yourself, “Why did this happen to us?”

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

If you are feeling guilty or responsible for your child’s illness and surgery, this is a normal feeling for parents. You may think that your dreams have been shattered and may wonder if your child will be able to do the things that others do. Most parents worry about their child’s life span, ability to work, adjustment to living with an colostomy and in later years, marriage and family. These are normal concerns of all parents facing major changes in their child’s life.

When your child is in the hospital, be there as often as possible. Being in the hospital and having surgery are frightening at any age. At this time your child is especially vulnerable and needs to feel wanted and reassured about your love. You being there makes him/her feel secure.

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

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

Psychosocial Issues

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

Your son or daughter may be afraid that young friends and relatives will not want to be around them. Your acceptance is needed. Encourage your son or daughter to talk to you about these feelings. If you are open and natural about the colostomy, 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 colostomy. Too much sympathy, however, is not good and will take away a sense of independence. Listen, try to understand feelings, encourage and be tactful. It is difficult not to overprotect and pamper a child who is recovering from major surgery. Because it is so easy to give in to your feelings, be as firm as possible.

If your child is very young, they will probably accept the colostomy easier 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 associated with puberty and adolescence, this surgery comes at an especially difficult time. The changes in body image caused by the colostomy may compound the stresses of adolescence. Your teenager may feel unattractive, rejected and different because of the colostomy.

You may notice temporary changes in behavior patterns. Your acceptance and support is especially needed now. Try to understand the feelings and listen to the complaints. Provide encouragement to find realistic solutions to these problems.

Management Issues

Take an interest in your child’s care and management. If he or she is old enough, you will want to encourage independence in their ostomy care. Your child may require some help and support at first, due to insecurity about the new supplies, physical weakness and tiring easily. A very young child can be taught to empty the pouch. An older child can get supplies together and learn 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 assisting you. Later on you can help, standing by to help only when it is needed.

A very important person to help with care of your child is the ostomy nurse. This is a person who has received special training in ostomy management. To find an ostomy nurse, call 888-224-9626 or visit www.wocn.org.

Be prepared for trial and error in managing, or helping to manage, your child’s colostomy. There are some changes that will occur 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 anything new needs experimentation and adaptation. A sense of humor and a positive attitude will be helpful.

Everyday Living

Be flexible in dealing with your child’s adaptation to school and everyday living situations. If at first, the pouch should happen to leak at school, your child can go to the school nurse. You might pick up your child for a pouching 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 trousers. Instead of rushing out of the class as everyone else did, he calmly waited until everyone had left the room. In this way, he very wisely avoided embarrassment and then called home so that his mother could pick him up. You may want to visit the principal, the classroom teacher, the physical education teacher and the nurse to explain your child’s needs.

You will find that your child can participate in sports, can go on overnight trips, to camp and do all activities enjoyed before. At first, it will be difficult to let your child go away on his or her own. Discuss what can be done if any problems come up while your child is away from home. Treat them as you treat your other children.

Talk with your child about how they will explain the surgery to others. He or she may want to tell close friends, relatives and acquaintances. Naturally, people will be curious. Once the surgery is explained, chances are your child will be accepted as before. Your child will likely duplicate your explanation. If you discuss it in a natural way with others, your child will also. Most people will want to know what to expect and how they can help. Encourage others to empathize, not sympathize.

Remind your child to be considerate of others. Cleaning up the bathroom after ostomy care is important to maintaining family harmony. You and your child are facing a new situation in your lives. If it is approached with openness, perseverance and a sense of humor, you will find that an colostomy will not stop your son or daughter from engaging life’s everyday activities. Parents find that a healthy child with an colostomy can once again be a happy child.

Each summer, a Youth Rally for ages 11-17 is held on a college campus. This is a camp for young people with ostomies, alternate procedures and other related conditions. Planned educational sessions on self-esteem, body image, hygiene, ostomy issues plus discussion sessions, craft projects, tours, and sports are offered. Visit www.rally4youth.org for more information.

Resources Available

If your problem is medical, you should seek help from your doctor, surgeon, or clinic. If you are in a place where you cannot make contact with them, try to find a doctor or clinic specializing in ostomy care. If that fails, get in touch with the nearest ostomy support group or WOC(ET) nurse to ask for advice in finding a doctor.

United Ostomy Associations of America, Inc. (UOAA)
Telephone: 1-800-826-0826
www.uoaa.org

International Ostomy Association (IOA)
The International Ostomy Association provides information regarding ostomy associations worldwide. For membership information visit www.ostomyinternational.org

Wound, Ostomy and Continence Nurses Society (WOCN)
The WOC(ET) nurse is a specialist in ostomy care and rehabilitation. In addition to serving individual ostomates, ostomy nurses coordinate patient care, teach nursing personnel in hospitals and clinics and work closely with the nursing and medical professions to improve the quality of ostomy rehabilitation programs. Contact the WOCN national office for information and local ostomy nurse referrals at 888-224-9626 or visit the web site at www.wocn.org

Helpful Agencies

A number of cancer centers may have ostomy rehabilitation programs which include all types of ostomies, whether or not they are caused by cancer. Check for available services such as pamphlets, ostomy supplies for the medically indigent or assistance in contacting a local ostomy support group. You can also contact the American Cancer Society, 800-ACS-2345 for information regarding ostomy support groups.

For immediate assistance, before being discharged from the hospital, the hospital social worker or discharge planner can answer questions and offer information.

For home health care, the Visiting Nurse Association (VNA), Public Health Nurses or other home care agencies provide valuable services. They are listed in the yellow pages of your telephone book.

Medicare, Medicaid and Social Security in the United States

Colostomy care and supplies are covered under part B of Medicare. These same supplies and care may be covered under Medicaid (state regulated). Check with an ostomy nurse about which health department or other agency in your state administers this program. Social Security disability benefits are available to those who qualify. For more information, visit www.medicare.gov.

Glossary

Anastomosis: the surgical formation of a passageway between two normally distant spaces or organs. A “hooking-up” of bowel, ureter, artery, vein, etc., after a section is removed.

Anus: the terminal part of the rectum.

Benign: not cancerous, not malignant.

Carcinoma: cancer, malignant growth.

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

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

Colostomy: surgical opening of colon (large intestine) brought to the abdominal surface:

• permanent (end colostomy): loss of part of the colon, and usually, the rectum.
• temporary: allows lower part of the colon and/or rectum to heal or rest
• sigmoid: opening in the lower or end portion of the colon
• transverse: opening in transverse colon (upper abdomen, middle or right side).

Cone: part of an irrigation set for sigmoid colostomy. Plastic cone-shaped piece at end of tubing, fits snugly against stoma to keep solution in the colostomy.

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

Crohn’s Disease: ileitis, regional enteritis or granulomatous disease of the bowel: inflammatory bowel disease which penetrates the deep lining of any part of small or large bowel. In selected cases, ileostomy becomes necessary; Crohn’s can flare up after ileostomy surgery, however.

Diverticulitis: inflammation of diverticula (little sacs in the colon); can cause abscess, scarring with stricture or perforation of the colon with peritonitis in severe cases.

Diverticulosis: presence of diverticula (little sacs on the colon).

Electrolytes: salts and minerals needed by the body for health.

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

Face Plate/Flange: molded plastic component of a two-piece reusable pouch system that connects to the ostomy pouch. The face plate adheres to the skin around the stoma.

Familial Adenomatous Polyposis (multiple polyps): rare disease that runs in families.The colon and rectum contain many polyps. This is different from merely the presence of a small number of polyps in the colon. Familial polyposis requires regular medical supervision of all members of the family because of serious complications and a strong tendency to develop into cancer.

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

Hernia: the protrusion (bulging) of an organ or tissue through a structure which usually contains it or the protrusion of an internal organ through the abdominal musculature (abdominal hernia); can occur around stomas.

Ileum: lowest part or end of the small intestine.

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

Irrigation: an enema through the stoma, used by some people with colostomies to regulate the passage of stool.

Low residue diet: a dietary regimen which eliminates bulk-forming food, hard-to-digest food and high-fiber food.

Malignancy: a cancerous growth.

Mucous: fluid secreted from glands or cells. It lubricates membranes, including the digestive tract.

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

Ostomate: a person who has a colostomy, ileostomy or urostomy.

Ostomy Visitor: A member of an ostomy support group with an ostomy and special training to visit people before or shortly after ostomy surgery. The visitor offers support and educational advice rather than medical information.

Peristalsis: progressive waves of motion which occur without voluntary control, to push contents through the intestine.

Peristomal Skin: the outlying skin immediately around/touches the stoma.

Polyp: small projection inside of bowel, often mushroom shaped or may be flat. It is usually benign, but can be malignant.

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

Rectum: lowest portion of the large intestine.

Resection: surgical removal or excision.

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

Revision: construction of a new stoma when the original one does not function well.

Skin Barrier: any one of several substances used to cover skin around the stoma. Can be wafers, pastes, wipes, etc.

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

Stoma (opening): the end of the colon or ileum which is brought through the surface of the skin. It often protrudes like a nipple and is 3/4” to 1-3/4” in diameter. It is usually pink to red in color.

Wound, Ostomy and Continence Nurse, also known as an Enterostomal Therapy (ET) Nurse: A person who takes care of and teaches ostomy patients. A special training course for registered nurses is required for certification.

This document was originally written by the United Ostomy Association and reviewed by Jan Clark, RNET, CWOCN and Peg Grover, RNET.

Revised: 01/04/2006