Previous   Next

11. Ostomy

v Key Ostomy Terms

Types of Ostomies and Continent Procedures

The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall. The most common specific types of ostomies are described below.
 
Colostomy

he surgically created opening of the colon (large intestine) which results in a stoma. A colostomy is created when a portion of the colon or the rectum is removed and the remaining colon is brought to the abdominal wall. It may further be defined by the portion of the colon involved and/or its permanence.

Temporary Colostomy

Allows the lower portion of the colon to rest or heal. It may have one or two openings (if two, one will discharge only mucus).

Permanent Colostomy

Usually involves the loss of part of the colon, most commonly the rectum. The end of the remaining portion of the colon is brought out to the abdominal wall to form the stoma.

Sigmoid or Descending Colostomy

The most common type of ostomy surgery, in which the end of the descending  or sigmoid colon is brought to the surface of the abdomen. It is usually located on the lower left side of the abdomen.

Transverse Colostomy

The surgical opening created in the transverse colon resulting in one or two openings. It is located in the upper abdomen, middle or right side.

Loop Colostomy

Usually created in the transverse colon. This is one stoma with two openings; one discharges stool, the second mucus.

Ascending

Colostomy A relatively rare opening in the ascending portion of the colon. It is located on the right side of the abdomen.

Ileostomy

A surgically created opening in the small intestine, usually at the end of the ileum. The intestine is brought through the abdominal wall to form a stoma. Ileostomies may be temporary or permanent, and may involve removal of all or part of the entire colon.

Ileoanal Anastomosis

This is now the most common alternative to the conventional ileostomy. Technically, it is not an ostomy since there is no stoma. In this procedure, the colon and most of the rectum are surgically removed and an internal pouch is formed out of the terminal portion of the ileum. An opening at the bottom of this pouch is attached to the anus such that the existing anal sphincter muscles can be used for continence. This procedure should only be performed on patients with ulcerative colitis or familial polyposis, and who have not previously lost their rectum or anus. It is also called J-pouch, pull-thru, endorectal pullthrough, pelvic pouch, or a combination of these terms.

Continent Ileostomy

This surgical variation of the ileostomy is also called a Kock pouch. A reservoir pouch is created inside the abdomen with a portion of the terminal ileum. A valve is constructed in the pouch and a stoma is brought through the abdominal wall. A catheter or tube is inserted into the pouch several times a day to drain feces from the reservoir. This procedure has generally been replaced in popularity by the ileoanal pouch. A modified version of this procedure called the Barnett Continent Ileal Reservoir is performed at a limited number of facilities.

Urostomy

This is a general term for a surgical procedure which diverts urine away from a diseased or defective bladder. The ileal or cecal conduit procedures are the most common urostomies. Either a section at the end of the small bowel (ileum) or at the beginning of the large intestine (cecum) is surgically removed and relocated as a passageway (conduit) for urine to pass from the kidneys to the outside of the body through a stoma. It may include removal of the diseased bladder.

Continent Urostomy

There are two main continent procedure alternatives to the ileal or cecal conduit (others exist). In both the Indiana and kock pouch versions, a reservoir or pouch is created inside the abdomen with a portion of either the small or large bowel. A valve is constructed in the pouch and a stoma is brought through the abdominal wall. A catheter or tube is inserted several times daily to drain urine from the reservoir.

Indiana Pouch

The ileocecal valve that is normally between the large and small intestines is relocated and used to provide continence for the pouch which is made from the large bowel. With a kock pouch version, which is similar to that used as an ileostomy alternative, the pouch and a special “nipple” valve are both made from the small bowel. In both procedures, the valve is located at the pouch outlet to hold the urine until the catheter is inserted.

Types of Pouching Systems

Pouching systems may include a one-piece or two-piece system. Both kinds include a faceplate/flange (barrier or wafer) and a collection pouch. The pouch (one-piece or two-piece) attaches to the abdomen by the faceplate/flange and is fitted over and around the stoma to collect the diverted output, either stool or urine. The barrier is designed to protect the skin from the stoma output and to be as neutral to the skin as possible.

 
Colostomy and Ileostomy Pouches clip

Can be either open-ended, requiring a closing device usually called a clamp or tail  or closed and sealed at the bottom. Open-ended pouches are called drainable and are left attached to the body while emptying. Most commonly, closed end pouches are used by colostomates who can irrigate (see below), or by patients who have regular elimination patterns. Closed end pouches are usually discarded after one use.

Two-Piece Systems

Consist of a separate flange and pouch. The pouch contains a closing ring which mechanically attaches to a mating piece on the flange. The most common closure is a pressure fit snap ring, very similar to that used in TupperwareTM.

One-Piece Systems

As the name implies, are those in which the wafer and pouch are assembled together in one piece and not separate. Both two-piece and one-piece pouches can be either drainable or closed.

Irrigation Systems

Some colostomates can “irrigate,” using a procedure analogous to an enema. This is done to clean stool directly out of the colon through the stoma. This requires a special irrigation system, consisting of an irrigation bag with a connecting tube (or catheter), a stoma cone and an irrigation sleeve. A special lubricant is sometimes used on the stoma in preparation for irrigation. Following irrigation, some colostomates can use a stoma cap, a one- or two-piece system which simply covers and protects the stoma. This procedure is usually done to avoid the need to wear a pouch.

Urinary Pouching Systems

Urostomates can use either one or two piece systems. However, these systems also contain a special valve or spout which adapts to either a leg bag or to a night drain tube connecting to a special drainable bag or bottle.

These are the major types of pouching systems. There are also a number of styles. For instance there are flat faceplates and convex shaped ones. There are fairly rigid and very flexible ones. There are faceplates with and without adhesive backing and with and without a perimeter of tape. The decision as to what particular type of system to choose is a personal one geared to each individual’s needs. There is no right or wrong choice, but each person must find the system that performs best for him or her. The larger mail-order catalogues will illustrate the types and styles from all or most of the suppliers. If you have any trouble with your current pouching system, discuss the problem with an ostomy nurse or other caregiver and find a system that works better for you. It is not uncommon to try several types until the best solution is found. Free samples are readily available for you to try. There is no reason to stay with a poorly performing or uncomfortable pouching system.

Types of Accessories

You may need or want to purchase certain pouching accessories. The most common items are listed below.

 
Convex Inserts

Convex shaped plastic discs that are inserted inside the flange of specific faceplates.

Ostomy Belts

Belts that wrap around the abdomen and attach to the loops found on certain pouches. Belts can also be used to help support the pouch or as an alternative to adhesives if skin problems develop. These usually add a measure of security.

Pouch Covers

Made with a cotton or cotton blend backing, easily fit over the pouch and protect and comfort the skin. They are often used to cover the pouch during intimate occasions.

Skin Barrier

Wipes and powder help protect the skin under the wafer and around the stoma
Liquid/Wipes/ from irritation caused by digestive products or adhesives. They also aid in adhesion
Powder of the wafer.

Skin Barrier

Paste Paste that can be used to fill in folds, crevices or other shape or surface irregularities of the abdominal wall behind the wafer, thereby creating a better seal.

Tapes

Tapes are sometimes used to help support the flange or wafer (faceplate) and for waterproofing. They are available in a wide range of materials to meet the needs of different skin sensitivities.

Tape Remover

Tape remover is helpful in cleaning the adhesive that might stick to the skin after removing the tape or faceplate, or from other adhesives.

Psychosocial Issues

Patient’s Concerns About Surgery

The reaction to intestinal or urinary diversion surgery varies from one individual to the others. To some, it will be a problem, to other, a challenge; where one person considers its life-saving, another finds it a devastating experience. Each person will adapt or adjust in their own way and in their own time.

Body Image/Self-Esteem Concerns

Permanent and significant changes in the body’s appearance and functional ability may change the way the person internalizes their body image and self-concept.
Fear of loss is normal and facing any loss is difficult. What are patients giving up by having this operation? Is there any gain? How changed will they be? Such thoughts may lead to weeping or depression, or they may be denied.

It is important to understand the impact of the ostomy surgery on the patient’s change in self-image and how they perceive themselves. It may be accepted as the lesser of two evils, or they may refuse to acknowledge its existence, or may hold onto the belief that it is a temporary situation.
Within the rehabilitation process there are times that patients should have the opportunity to express or deny their feelings, about their surgery, the changes in their body or their self-image.

Self-Care Concerns

Patients have to be reassured that they will be taught self-care and that they will be able to master the management process. Basic anatomy and physiology should be explained to new patients, so they can better understand the extent of their surgery. Management options should be offered.

Patients should begin to assist the ostomy nurse with caring for the ostomy as soon as possible. Becoming involved in this process will begin to build confidence and help the patient to regain control of his situation.

Relationship Concerns

Patients may fear that their social role may be changed and that others may not accept them as in the past. One of the first concerns seems to be how to tell others about your surgery, who to tell and when.
 

Patients should be prepared to explain their surgery with a few brief statements such as, “An ostomy is a surgical procedure for the diversion of bowel (or bladder).”

They should understand that they do not have to tell everyone about the surgery. Be selective about who and how much to tell. It may be only to friends who will be supportive throughout the rehabilitation process.

Returning to the work place may present a concern about restroom facilities, interaction with coworkers, and feelings of being “watched.”

Maybe a few of their coworkers may need to know in the event of an emergency.

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 any of these issues.

Sexuality issues are common concerns for the new ostomate. Linked closely to our feelings of sexuality is how we think about ourselves and our body image.
 

Any sexuality concerns that you have should be discussed between the patient and his partner. It is likely that the partner will have anxieties due to a lack of information. An intimate relationship is one in which it matters how well two people can communicate about the most personal of human functions, that is, bodily elimination and sex.

Ostomy surgery may present more concerns for single individuals. When to tell depends upon the relationships. 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.

Phases of Psychological Adaptation

Almost every patient goes through four phases of recovery following an accident or illness that results in loss of function of an important part of the body. The patient, along with the family, goes through these phases, varying only in the time required for each phase. People may experience the various phases of adaptation in a different order and at varying rates. Some people may skip certain phases entirely and some may move up and down at different times.

These phases are shock, denial, acknowledgment and resolution.
 
1.

Shock or Panic. Usually occurs immediately after surgery. The patient is unable to process information and may be tearful, anxious and forgetful. This phase may last from days to weeks.

2.

Defense/Retreat/Denial. This phase may last for weeks or months and delays the adaptation process. During this phase, the individual denies or minimizes the significance of the event and defends himself against the implications of the crisis. You may note the avoiding of reality and “wishful” thinking.

3.

Acknowledgment. As the patient moves to the next step of acknowledgment, he begins to face the reality of the situation. As you give up the existing old structure, you may enter into a period, at least temporarily, of depression, of apathy, of agitation, of bitterness, and of high anxiety.

4.

Adaptation/Resolution. During this phase, the acute grief begins to subside. The patient copes with their situation in a constructive manner and begins to establish new structures. They develop a new sense of worth. This phase may take one to two years.

 
With the aid of an ostomy nurse and the ostomy visitor, you learn about living with a stoma.

v Sex and the Male Ostomate

Making Love

Ostomy Management

Good ostomy management is the key to establish confidence during lovemaking. The pouching system should be free of odor and leakage. Pouches should be emptied prior to lovemaking and some ostomates may wish to avoid eating or drinking anything that may give trouble. Consider opaque pouches and/or pouch covers to enhance intimacy.
 

Positions: If the pouch or other stoma covering seems to be in the way during intercourse, experiment with different positions.

Preparation: In addition to good ostomy management, preparation for sex is the same as it is for the non-ostomate: cleanliness, appealing nightclothes, privacy and a loving attractive manner.

Psychological Problems Following Surgery

Many sex problems that male ostomates experience after surgery may stem from psychological factors. It is often difficult to determine the difference between psychological and physical factors. If sexual difficulty should be experienced, careful consideration of any psychological issues may help resolve the cause.
Most of the following concerns apply primarily to the immediate postoperative period.
 

Serious anxiety or fear about one’s ability to perform sexually, the attractiveness of his altered body, the possibility of odor, and the security of his pouch or other stoma covering.

Failure because of attempting intercourse before strength returns following the operation.

Depression which many patients suffer following major surgery.

Medication, sedative or other.

It is important that the new male ostomate and his partner understand that impotence is not unusual and is usually temporary because of the foregoing reasons.
A cooperative partner is one who takes the ostomy for granted with warmth, tenderness, and patience. They engage in activities that provide both partners with maximum enjoyment. In some cases this may require that previous sex patterns may need to be changed. Any changes should be pleasing and acceptable to both lovers.

The presence of a stoma on the abdomen is quite a change in one’s anatomy and can make the ostomate self-conscious and may pose a psychological barrier in sexual relations. There should be some communication with one’s partner that intercourse will not harm it.

The ostomate should be relaxed and unworried. This may be difficult the first time, but subsequent encounters are likely to become easier. If the partner expresses concern about hurting the stoma or dislodging the pouch, one should not misinterpret it as rejection.

Sexual Difficulty
 
1.

It is important that the male and his mate understand that failure to achieve and/or sustain an erection can happen, but in most cases the condition is temporary and potency will return in a few months. Be patient, do not panic.

2.

This does not mean that the couple should avoid making love. There is much more to sex than erections and orgasm. Love play, or pleasuring each other, is delightful.

3.

There are many ways a man can satisfy his partner sexually up to and including orgasm. There is masturbation, manual stimulation, oral-genital sex, stuffing the flaccid penis into the vagina and moving the pubis without thrusting.

4.

Uninhibited communication between both partners is the key to finding the best technique.

Organic Problems Following Surgery

The nature and extent of ostomy surgery in some instances may cause sexual impairment of a physical or organic nature. This is because of the location of the prostate glands and the nerves serving them in the case of urostomy surgery. When the rectum is removed in ileostomy or colostomy surgery, it is because of the location of the nerve system serving the genitals.

The types of sexual impairment that may result from removal of the bladder or the rectum are

1. Impotence. Inability to achieve and/or sustain an erection.

2. Orgasmic dysfunction. Inability to have an orgasm or the lessening of the quality and intensity of orgasm.

3. Ejaculatory incompetence. Inability to ejaculate.

4. Sterility. Inability to produce sperm for impregnation of the female.

Seek Professional Advice

Medical professionals should address any sexual difficulty, first with the ostomy surgeon and/or the WOC(ET) or ostomy nurse. Referral may be made to a urologist, therapist or counselor, and they may recommend new advances in medical and surgical interventions.
Note: More detailed information can be found in Sexuality—A Guide, a publication of the United Ostomy Association. Contact UOA at 1-800-826-0826.

v Sex and the Female Ostomate

Making Love

After surgery, while you are recovering and learning to manage your ostomy, you may not experience any sexual feelings for days, weeks, or even months. On the other hand, you may begin to focus on sexual feelings while still in the hospital. You need to let your partner know what to expect from you about intimacy and sex.

Women recovering from ostomy surgery worry about many things: How they will look to themselves and if they will still be attractive to others, will there be pain, how to manage the pouch before, during and after sex. Remind yourself that your lovableness and self-worth do not depend on a body part.
If the rectum has been removed, the whole position and structure/size of your vagina may feel different. Be aware that for some women it is either uncomfortable and/or painful. Your vagina may feel too small or too tight. You may not come to orgasm the first time if things are too strange and different.

An intimate relationship is one in which it matters how well you can communicate about this intimate experience. Your partner will take the cue from you. But do not forget that your partner’s feelings are real, too, and they should not be denied any more than your own.

Potential Problems

The longer you lived with the conditions of disease process, the longer you adjusted your sexual activities to the limitation they placed on you. This will now change with some caring and sharing on both your parts. A helpful task for you now is to sort through these limitations to determine if they were from the illness or “ancient history” experiences.

Pain blocks good sexual feelings. Remember that the rectal-genital area consists of soft tissue that is rich in blood vessels and nerves; tissues like this bruise and swell easily when traumatized. They take time to heal. Another source of pain is lack of lubrication.
Most women who have experienced painful postoperative intercourse say that the pain diminishes with time, hormonal creams or lubricants, relaxation, gentle thrusting, and manual stimulation.

Factors Which Influence Sexual Intimacy
 

Desire. Sometimes you may experience little or no desire for sex. Illness and medical treatments often lower sexual desire as do pain, medication and just plain not feeling well. A change in body image and lowered self-esteem interfere with sexy feelings. Fatigue, depression, anxiety or anger is likely to dampen desire.

Loss and grief. Ostomy surgery means a major change in your body. Even if your surgery has brought an end to years of illness and discomfort, or has been to cure a life-threatening disease, it still represents the loss of a natural body function. Not infrequently, grief is experienced as anger or fear.

Body image. Body image is the way we see ourselves in the mirror and like to imagine our appearance. Although the change seems so great to oneself, most others do not see the ostomy as changing in any major way the person they love. Harmony within oneself precedes harmony in a relationship.

Medications. Drugs taken during illness and surgery may affect sexual behavior. Each person reacts individually to medication. Anesthesia can leave a person feeling off center for quite some time.

Surgical procedures. If the rectum has been removed along with the colon, there may be a different sensation in the vagina during intercourse since part of its supporting structure is gone. In some women the angle of the vaginal barrel changes penetration, and orgasm may be harder to achieve. The uterus may change position, leading to difficulties in conception. If radiation therapy has been received, there may be vaginal tenderness and dryness.

Talking About Sex

It is your right to share or not to share information about your body. Sharing information about your ostomy may not be easy. If you find someone with whom you want to share a sexual relationship, then you need to decide when and how much you want to share about your operation.

Many a loving partner of an ostomate has admitted to feeling anger and resentment towards a sick mate. Such feelings are natural. Until they have been expressed and worked out, both of you may feel guilty and unlovable. There is nothing more frustrating and painful than dealing with a partner who refuses to talk about important issues in a relationship such as sex, anger, fear, rejection, or the ostomy. Going together to a professional counselor may be the answer.

Seek Professional Advice

Any sexual difficulty should be addressed by medical professionals, first the ostomy surgeon and/or the WOC(ET) or ostomy nurse. Referrals may be made to gynecologist, therapist or counselors.

v Sex and the Single Ostomate

So You Have an Ostomy

Individuals with ostomies have proven that they can achieve anything they desire. An ostomy alone is not a deterrent to any activities you are otherwise capable of and that includes your social life.

Whether a person desires companionship, active participation in sex, or a serious romance leading to marriage, how one’s surgery will be accepted by a potential partner or friend is a normal concern.

Body image is the way we see ourselves in the mirror and like to imagine our appearance. Although the change seems so great to oneself, most others do not see the ostomy as changing in any major way the person they love. Harmony within oneself precedes harmony in a relationship.

Sharing the News
 

Whom. You can choose whom you want to tell. Sexual partners will naturally have to be told because, covered or uncovered, the stoma or pouch will be apparent during intimate moments. You should tell a prospective marriage partner, because being open and honest is important to the success of any marriage. In addition, the reaction to your disclosure gives a good indication of the person’s feelings about the whole you.

When. You can pick your time to tell but it seems better to tell early in a relationship. This not only relieves your anxiety, but also if there is an adverse reaction the letdown is not as harsh as it might be later. Most people prefer to tell at a time when there is a calm and understanding mood with their partner. Do not wait until “discovery is imminent.”

What. When you explain the surgery, do it clearly and confidently, with self-assurance. Start with a simple explanation. You need not be too detailed and technical at this point. Emphasize that this type of surgery was necessary and that managing your ostomy does not interfere with your activities and enjoyment of life.

Rejection. People do not fall in love with, or like, everyone they date. Nearly every would-be lover gets his or her share of romantic rejection. Individuals with ostomies are no exception. When you experience rejection your ostomy may seem to be the only reason for rejection; however, chances are it is really only a convenient excuse. Be sure it is rejection and not misunderstanding. Allow enough time for him, or her, to think it through.

Preparing For Sex

Just as you attend to personal hygiene when anticipating intimacy, ostomy hygiene is also important. Of course, good ostomy hygiene should always be practiced:
1.

The covering for regulated or continent ostomies should always be clean and neat.

2.

The pouch for other ostomies should be clean, neat and fastened securely. The pouch should be odor free and preferably opaque. If transparent, use a pouch cover.

3.

Unless sex is absolutely spontaneous, the pouch should be emptied beforehand.

During intimacies, especially the first encounters after surgery or with a new partner, your partner may have a fear of hurting your stoma or dislodging your pouch or covering. Intercourse will not harm the ostomy nor will most positions disturb the pouch or covering.

Women can accomplish covering the pouch or stoma area by wearing a sexy shorty nightgown or crotch-less panties. Some men wear cummerbund type coverings, which encircles the midsection and the pouch can be tucked up out of the way. A pouch cover can be worn. There are many products available that can be purchased or you can make your own covering.

Physical Sexual Limitations

A physical impairment that affects genital sexual relations can occur with ostomy surgery, but people to whom this happens must realize there are also ways for them to enjoy sex, intimacy and marriage.

Extensive surgery in women may cause a physical impairment resulting in painful intercourse the first few times after surgery to remove the rectum. A decrease in clitoral feeling and possible inorgasm may occur.

Male potency can be affected by ostomy surgery because necessary surgical procedures may interfere with the nerve pathways that control the male’s ability to have an erection or to ejaculate. Every male with an ostomy should consider psychological factors before jumping to conclusions that an erectile problem is physically caused.

Any man or woman who has doubts or questions about sexual function after an operation should discuss the matter with a medical professional.

Additional Concerns

Ostomy surgery knows no demographic bounds. It also happens to people who are homosexual. The same concerns and anxieties are present in gay or lesbian relationships. Apply the same principles for coping with telling, rejection, and preparing for sex.

Since the closing of the anus may present a sexual impairment for some individuals with an ileostomy or colostomy, modifications for sexual fulfillment are necessary. The fact that a person is homosexual should be confided to the physician or surgeon if it is at all possible.

Seek Professional Advice

Any sexual difficulty should be addressed by medical professionals, first the ostomy surgeon and/or the WOC(ET) or ostomy nurse. Referrals may be made to gynecologist, urologist, therapist or counselor.

v Frequently Asked Questions

As always, in order to obtain answers to your individually specific questions, be sure to consult with your doctor or ostomy nurse for help.

Who should I tell? What should I say about my surgery?

You should tell those who need to know, such as healthcare providers, your spouse or significant others, and people who are involved in your recuperative care.
You need not feel you have to explain your surgery to everyone who asks. Those who are just curious need to know only that you had abdominal surgery, or that you had part or all of your colon or bladder removed.

If you are considering marriage, thorough discussions with your future spouse about life with an ostomy and its effect on sex, children, and family acceptance will help alleviate misconceptions and fear on the part of the spouse.

If you have children, answer their questions simply and truthfully. A simple explanation will be enough for them. You may want to confide in your employer or a good friend at work because keeping it a complete secret may cause practical difficulties.

Will I be able to continue my daily activities once I recover from surgery?

As your strength returns, you can go back to your regular activities. Most people can return to their previous line of work; however, communicate with your healthcare team about your daily routines, so they can assist you to returning to maximum health as early as possible.

An ostomy should not limit your participation in sports. Many physicians do not allow contact sports because of possible injury to the stoma from a severe blow or because the pouching system may slip, but these problems can be overcome with special ostomy supplies. Weight lifting may result in a hernia at the stoma. Check with your doctor about such sports. There are many people who are distance runners, skiers, swimmers, and participants in many other types of athletics.

What about showering and bathing? Should I bathe with or without my pouch?

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 opening. Choose a time for bathing when the bowel is less active. You can also leave your pouch on while bathing.

What can I eat? Will I need to change my diet?

There may be some modifications in your diet according to the type of ostomy surgery.
People with colostomy and ileostomy surgery should return to their normal diet after a period of adjustment. Introduce foods back into your diet a little at a time and monitor the effect of each food on the ostomy function. Chew your food well and drink plenty of fluids. Some less digestible or high roughage foods are more likely to create potential for blockage problems (i.e., corn, coconut, mushrooms, nuts, raw fruits and vegetables).

There are no eating restrictions as a result of urostomy surgery. Urostomates should drink plenty of liquids each day following the healthcare team’s recommendations.

Will I be able to wear the same clothes as before?

Whatever you wore before surgery, you can wear afterward with very few exceptions. Many pouching systems are made today that are unnoticeable even when wearing the most stylish, form fitting clothing for men and women.

Depending on your stoma location you might find belts uncomfortable or restrictive. Some people choose to wear higher or looser waistbands on trousers and skirts. Cotton knit or stretch underpants or panty hose may give the support and security you need. Some men finds that jockey type shorts help support the pouch.

Women may want to choose a swimsuit that has a lining to provide a smoother profile. Stretch panties (with lycra) can be also be worn under a swimsuit to add support and smooth out any bulges or outlines. Men may prefer to wear a tank shirt and trunks if the stoma is above the belt line.

What about sex and intimacy? Will I be able to get pregnant after surgery?

Sexual relationships and intimacy are important and fulfilling aspects of your life that should continue after ostomy surgery. Your attitude is a key factor in reestablishing 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 only temporarily. Discuss any problems with your physician and/or ostomy nurse.

Your ability to conceive does not change and pregnancy and delivery should be normal after ostomy surgery. However, if you are thinking about becoming pregnant, you should first check with your doctor about any other health problems.

Is travel possible?

All methods of travel are open to you. Many people with ostomies travel extensively, from camping trips to cruises to plane excursions around the world. Take along enough supplies to last the entire trip plus some extra, double what you think you may need. Checked luggage sometimes gets lost, carry an extra pouching system and other supplies on the plane with you. When traveling by car, keep your supplies in the coolest part, and avoid the trunk or back window ledge. Seat belts will not harm the stoma when adjusted comfortably.

When traveling abroad, take adequate amount of supplies, referral lists for physicians and medical centers, and some medication to control any diarrhea and stop the fluid and electrolyte loss. When going through customs or luggage inspection, a note from your doctor stating that you need to carry ostomy supplies and medications by hand may be helpful. A traveler’s ID card is available through the UOA as a member benefit.

What about medications? Can I take vitamins?

Absorption may vary with individuals and types of medication. Certain drug problems may arise depending on the type of ostomy you have and the medications you are taking. Make sure all your healthcare providers know the type of ostomy you have and the location of the stoma. This information will help your pharmacist and other healthcare providers monitor your situation (i.e., time-released and enteric coated medications may pass through the system of ileostomates too quickly to be effective).

Will I always be wearing the same size and type of pouch?

The type of pouching system that was used in the hospital may need to be changed as the healing process takes place. Your stoma may shrink and may require a change in the size opening of your pouch. Your lifestyle may necessitate a change of the pouching system after a recuperative period. Make an appointment with your ostomy nurse to evaluate your management system.

Got any tips on emptying the pouch?

Check the pouch occasionally to see if it needs emptying before it gets too full and causes a leakage problem. Always empty prior to going out of the house and away from a convenient toilet. Most people find the easiest way to empty the pouch is to sit on the toilet with the pouch between the legs. Hold the bottom of the pouch up and remove the clamp. Slowly unroll the tail of the pouch into the toilet. Clean the outside and inside of the pouch tail with toilet paper. Replace the clamp.

How often should I change the pouch?

The adhesiveness and durability of pouching systems vary. Anywhere from three to seven day is to be expected. Itching or burning are signs that the wafer should be changed. Changing too frequently or wearing one too long may be damaging to the skin.

What should I do if hospitalized again?

Take your ostomy supplies with you since the hospital may not have your brand in supply. 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 is intact, 3) describe in detail your management routine and list the ostomy products used. For urinary stomas, 4) do not take a urine specimen from the urostomy pouch, use a catheter inserted into the stoma.

Where can I purchase supplies?

Supplies may be ordered from a mail order company or from a medical supply or pharmacy in your town. Check the yellow pages under “Ostomy Supplies” or “Surgical Supplies”, or “Hospital Supplies.” (For more information, see the Ostomy Product & Suppliers page on this site.)

Does insurance cover the cost of ostomy supplies?

Medicare Part B covers ostomy equipment. Medicare only allows a predetermined maximum quantity each month.

Medicaid is the federal/state insurance of last resort for low income persons. Check with the state Medicaid office for specifics.

Individual Health Insurance: most plans typically will pay you 80% of the “reasonable and customary” costs after the deductible is met.

When should I seek medical assistance?

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

• severe cramps lasting more than two or three hours

• a deep cut in the stoma

• excessive bleeding from the stoma opening (or a moderate amount in the pouch at several emptyings)

• continuous bleeding at the junction between the stoma and skin

• severe skin irritation or deep ulcers

• unusual change in stoma size and appearance

• severe watery discharge lasting more than five or six hours

• continuous nausea and vomiting; or

• the ostomy does not have any output for four to six hours and is accompanied by cramping and nausea.

v Ostomy Products

Suppliers

Finding the right type of ostomy supplies is an essential element for living well with an ostomy. After surgery we leave the hospital wearing a particular brand of ostomy equipment. Many people stay with their initial brand and live happily. However, there is more than one manufacturer of ostomy supplies, as well as more than one way to purchase them. Your WOC (ET) nurse is a good source of information for new products and for supplier recommendations.

Your choice of both product type and place of purchase is limited only by your personal requirements, and in some cases, by your type of medical insurance. Medicare and many HMOs will impose certain restrictions on the purchase of ostomy supplies. If you are on Medicare, an important consideration in choosing a supplier is whether they accept Medicare assignment. Always check with your insurance carrier to determine the details of your insurance. Also review Insurance Issues on this site.

Selection Considerations, Problems, and Customized Options

Here are some tips to remember when choosing your type of ostomy supplies

Always consult with your ostomy nurse first for information and recommendations for your particular situation.

Remember that every person is different and you need to find what works best for you.

You should feel free to experiment with different manufacturers of the same product or different types of products. Call the manufacturer’s toll free 800 number and request product samples, or ask your supplier for a sample.

Check with your supplier for suggestions for new products. Ask if they have an ostomy nurse or other knowledgeable staff available to answer questions.

How to Handle Problems

Problems with your pouching systems generally split into two categories

Problem: Defective product - e.g., pinholes or tears in pouch material, broken tail clips, damaged flanges/wafers.

Solution: Contact either the manufacturer or the place of purchase. Request either a refund and/or a replacement product. Write down the lot numbers from the box and return it for new products. 

Problem: Product incompatibility - e.g., an allergy to the tape or materials in the wafer or pouch, leakage due to the wafer not sticking or developing after weight change, etc.

Solution: Contact your ostomy nurse for troubleshooting the exact cause, and for finding a better system. If you find you’ve recently purchased a large amount of a particular product that is no longer appropriate for you, contact the place of purchase for their policies on exchanges or credit. They often will also suggest alternative products to try on a no obligation basis.

Custom-Fitted Pouching Systems

It is sometimes necessary for individuals to have ostomy products (usually the wafer) custom-fitted for their particular situation. Ask your ostomy nurse for recommendations.

Major Manufacturers

Listed below are major manufacturers of ostomy products — e.g., pouches, wafers, etc. For additional manufacturers, consult the Advertisers Index in the Ostomy Quarterly Magazine or the Advertisers Page on this website, or check with your ostomy nurse.

Blanchard Ostomy Products
1510 Raymond Ave.
Glendale, CA 91201
818-242-6789
Karaya wafers, pouches, etc. for ileostomy, urostomy
 
Coloplast, Inc.
1955 West Oak Circle
Marietta, GA 30062-2249
800-533-0464
Colostomy & ileostomy pouches, skin barriers, plugs.
 
ConvaTec, a Bristol-Myers Squibb Company
P.O. Box 5254
Princeton, NJ 08543-5254
800-422-8811 (ostomy nurse on staff!)
Full product line, Sur-Fit Natura, Active Life, Autolock.
 
Cymed Ostomy Co.
1440C Fourth Street
Berkeley, CA 94710
800-582-0707
Full product line includung the MicroSkin Ostomy Pouching System.
 
EHOB (Formerly Cook/VPI)
250 North Belmont Avenue
Indianapolis, IN 46222
800.899.5553
FAX 317.972.4601
Non-Adhesive Ostomy Systems (urostomy, colostomy, ileostomy)

Genairex, Inc.
15371 Roosevelt Blvd., Suite 106
Clearwater, FL 33760
727-539-1365
 
Hollister Inc.
2000 Hollister Drive
Libertyville, IL 60048-3746
800-323-4060 (ostomy nurse on staff!)
Full product line: Hollister Flextend, Premier.
 
Marlen Manufacturing & Development Co.
5150 Richmond Road
Bedford, OH 44146-1331
216-292-7060
Full product line: Ultra Duet, Ultra, Skin Shield.
 
Nu-Hope Laboratories, Inc.
P.O. Box 331150
Pacoima, CA 91333-1150
800-899-5017
Urinary, colostomy, ileostomy pouches, adhesives, etc.

The Perma-Type Company
83 Northwest Drive
Plainville, CT 06062 (RN on Staff!)
860-747-9999 in CT;  800-243-4234 in other states
Reusable appliances for ileostomy, colostomy, urostomy.
 
Torbot Group, Inc.
1367 Elmwood Ave.
Cranston RI 02910
800-545-4254 (ostomy nurse on staff!)
Full product line, including customized appliances.

Evaluating Suppliers

There are three major catagories of ostomy supply dealers. Before you choose a particular supplier, you should be aware of the different services and choices each type offers
 

Medical/Surgical Supply Houses - These companies specialize in selling all types of medical supplies. If they focus on ostomy products, they may offer special services such as ostomy nurses on staff, product recommendations, and troubleshooting advice. They will have a large amount of frequently-used supplies in stock, but can also special-order items. You generally purchase products by shopping at their store.

Mail-order Companies - These companies operate on a national level, similar to any mail-order catalog. Once you receive a catalog, you can place an order by phone or by mail. Due to the large volume of supplies they sell, mail order supply houses often provide a discount on prices. They may also have ostomy experts available for consultation. They do provide an easy way to purchase supplies.

Local Drugstores - Due to consolidation and specialization in the industry, fewer and fewer chain drugstores will special-order medical supplies, but some of the remaining independent stores often will provide such customized service. They may or may not carry a number of different brands. However, they may charge higher prices due to smaller volume.

Locating a Supplier

There are several different ways to find suppliers of ostomy products
Ask your ostomy nurse for recommendations.
Look in your local Yellow Pages directory under “Medical Supplies,” “Surgical Supplies,” “Hospital Supplies,” “Ostomy Supplies,” etc.
Check the Advertisers Index of the Ostomy Quarterly Magazine or the Advertisers Page on this website.
Don’t forget to check your medical insurance policy, which may limit the suppliers you can use and still receive reimbursement.

Choosing the Right Supplier

Choosing a particular ostomy product supplier is a matter of individual preference. When shopping for ostomy supplies, as for any consumer product, you can shop for service as well as for price.

Remember that you have rights as a consumer and that you can change your supplier at any time, insurance permitting. The following issues are important to consider when evaluating an ostomy products supplier
 

Range of brands carried - Do they carry only the most popular items, and do they special-order items and new products?

Price - It sometimes pays to “comparison-shop.” Mail-order companies often discount from the list price, but charge shipping and handling costs. Some may not carry products from every manufacturer. Smaller local pharmacies may not be able to discount, may carry less inventory but may provide other services.

Ease of use and accessibility - Is it easier for you to walk or drive to the local pharmacy or pick up the phone and place a catalog order? Will the local surgical supplier or drugstore deliver? If you prefer to purchase only a few items at a time, think about the shipping and handling costs charged per order by mail-order companies. Also, find out how quickly you can obtain a product on an emergency basis.

Special services - Ask if there are ostomy nurses or other knowledgeable staff available for consultation and advice, if they provide custom-fittings of pouching systems, and if they will do special orders. Some suppliers are a wealth of information on ostomy products and their use. Remember, it never hurts to ask!

Insurance reimbursement - Do they handle direct billing to your insurer? Will they give you appropriate receipts to receive reimbursement if you file the claims yourself? Are they approved by your HMO to purchase supplies from and still receive reimbursement? Do they accept Medicare assignment or charge you the additional difference between the Medicare payment and the list price? (See the Insurance Issues page for more complete information on insurance reimbursement issues.)

Unused supplies - If your stoma size changes, or you switch to a different brand, find out if you can return your unused products for credit or a refund. Most suppliers will allow this but policies do vary. You could also donate surplus ostomy products through Friends of Ostomates Worldwide to its SHARE program, which sends these supplies to needy ostomates overseas.

Complaints - Ask how they handle returns or replacements of defective products. Some suppliers may accept them, others may tell you to call the manufacturer directly.

Accessories - Do they carry pouch covers, belts, waterproof tape, odor treatments, special underwear? These products are sometimes available from local suppliers, but can also be found in mail-order catalogs or ordered directly from the ads in the Ostomy Quarterly magazine or Advertisers Page on this site.


Source: United Ostomy Association, Inc.
19772 MacArthur Blvd.
Irvine, CA 92612-2413
(800) 826-0826
www.uoa.org