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

A. First, you should tell those who need to know about your surgery, such as health care providers, your spouse or significant other, and people who are involved in your recuperative care. Beyond this, it is important that you do what is most comfortable for you. In most cases people will never know about your ostomy unless you tell them. For your boss and coworkers, depending on your relationship, you might choose to say that you had abdominal surgery. For your friends and family you might want to say more. If you want people to know, you should tell them, but it's also okay not to tell.

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

A. Yes. Generally after surgery you can gradually resume the daily activities you were doing before. You may need to plan on doing certain things in a different way. For instance, ileostomates and urostomates need to take in a good amount of liquids. Unless there is a specific problem, your ostomy should not restrict daily living. With some people, such as those who have suffered from ulcerative colitis, an ostomy can greatly enhance the quality of that person's life.

Q. Will I be able to resume or maintain an active lifestyle if I choose? Travel, camp, swim, etc.?

A. Most people with an ostomy lead active lives, indeed some are professional athletes. Unless you have a particular problem, you can look forward to traveling, swimming and most other activities. You may have to plan ahead more carefully, such as making sure you have extra ostomy supplies with you when traveling. Some doctors recommend avoiding contact sports to prevent injury to the stoma and may prescribe a plastic protector cap for the stoma during some activities. It's common for people to reinforce the edge of the wafer with waterproof tape and/or wear an ostomy belt during physical activities such as running or swimming.

Q. What about showering and bathing? Should I bathe with or without the appliance? Will soap hurt the stoma?

A. People with ostomies shower and bathe both with and without their appliances according to their personal preference. Some people initially gain confidence for swimming by sitting in a tub of warm water to assure themselves that the appliance won't leak. Avoid using very hot water on the stoma as it may burn the sensitive tissue. Soap will not hurt it but try to avoid putting oil-based soaps and creams on the skin around it as they can cause adhesion problems with the appliance.

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

A. There may be some modifications in your diet but in most instances you should be able to eat a varied and well-balanced diet. Any dietary restrictions are highly individual. It is important to introduce foods a little at a time with plenty of liquids. For ileostomates, some less digestible or high roughage foods; such as corn, coconut, mushrooms, nuts, popcorn, dried or raw fruits and some vegetables are more likely to create potential blockage problems. People with colostomies and urostomies generally have fewer or no restrictions. It is important to drink lots of liquids and to chew your food thoroughly before swallowing. Ask your ET for a list of recommendations before or soon after you leave the hospital.

Q. Will there be odor coming from the pouch?

A. Generally there should be no odor coming from the pouch as it is designed to be odorproof. Depending on the type of ostomy you have and what you have eaten, you may have gas and odor when emptying the pouch. There are a lot of products that can be taken orally or placed in the pouch to combat odor. Some people like to use room deodorizers preventatively before emptying.

Q. The appliance provided to me in the hospital after surgery is very large and long. Will I always be wearing this size pouch?

A. After surgery, your initial output may be greater than it is a few months later. Pouches are available in many different types, styles and sizes. Check with your ET or supplier to learn about your choices.

Q. How many times a day will I empty the pouch?

A. It depends on the type of ostomy, what you eat and how quickly it passes through your system. For most ostomates two to six times a day is to be expected. Ileostomates must empty more often than colostomates. Urostomates will empty even more frequently.

Q, How long can I or should I wear one appliance between changes?

A. The adhesiveness and durability of systems vary. Anywhere from three to seven days is to be expected or whatever makes you and your skin comfortable. Specialists say that changing an appliance unnecessarily frequently, or wearing one too long, may be damaging to the skin. After a few months most people learn how long a single appliance will last.

Reprinted with permission from "Ostomy Resource Guide for the Greater Boston Area, 1995" published by the Ostomy Association of Boston.


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