[i] YES WE CAN! Advice on traveling with an ostomy and tip[s for everyday oliving, Barbara Kupfer etc p.122

Ostomy

• As a general tip, pouches should be changed:
  • When they are about one-third full and before you go to bed.  Excessive material may cause the pouch to pull away from the skin resulting in leakage, odor or infection of nearby skin.
  • Before engaging in sex or sports.
  • If you are having a spell of diarrhea.
  • Immediately before travel.
• Disposable pouches can be emptied into the toilet before being wrapped and put into the trash or they can be disposed of full if well wrapped.
• With a reusable pouch, first put some toilet tissue into the toilet bowl to prevent splash-back.  After emptying carefully clean and deodorize the pouch.  (Consider getting three pouches: one to wear, one for washing and one for emergencies).
• You can minimize the risk of odors by:
  • Eating foods which reduce the risk and avoid foods which produce gas (see below).
  • Being sure the attachment to the skin fits well and is firmly attached.
  • Releasing gas which may be in the bag in a safe environment such as a bathroom.
• For instruction about caring for an ostomy:
  • See an excellent presentation by American College of Surgeons. Click here .  
  • Easy to understand information is available at http://www.facs.org/patienteducation/skills/ostomyskills.pdf . 
  • There are also excellent home videos on You Tube. Search on “ostomies”.

The Stoma

• Properly fitting pouches are essential to prevent problems of the stoma. There should be a distance of l/8^th inch between the stoma and the opening of the ostomy appliance
• The stoma itself is self cleaning. The skin around the stoma must be protected from:
  • Bacteria and intestinal digestive enzymes which can break down skin, which is then likely to be infected by fecal bacteria. (The bacteria and enzymes are good when inside your system. They are not good for skin.)
  • Scratches or scrapes which can occur from ostomy attachments and which can become infected.
• Check the stoma every time that you change the appliance. The color should be beefy red. The stoma should be moist.
• Never irrigate your stoma with water you wouldn’t put into your mouth. For informaiton about safe drinking water, click here.

The sun

Do not keep supplies in the sun, even in the winter.

The most common way to reduce side effects is to follow these guidelines:

• Eat foods at a regular time each day. Eating 4 to 6 smaller meals may help to promote a regular bowel pattern. 
• Try eating the main dinner meal at noon and a smaller meal in the evening. This helps to reduce the stool output at night.
• Eat small portions of food.
• Eat slowly.
• To help the digestive system, chew foods completely. Make sure food is broken down to very small pieces before swallowing. Especially avoid chewing large pieces of leafy vegetables.
• Consume foods that are least likely to produce gas, odors or multiple poop syndrome (MPS, diarrhea).
• Help promote a regular bowel pattern by eating at the same time each day - preferably 4 - 6 smaller meals. 

For a list of foods and drinks and their effect on your system, see the next section.

Overview

Certain foods and liquids are more likely to cause gas, diarrhea, constipation, incomplete digestion or urine odor. Which effect a food will have on you depends on your body. Consider trying different foods, one at a time, to learn about their effect on your body.

Effect Of Food On Gas 

Gas can re reduced by eating and drinking smaller portions of gas-forming foods and liquids. It also helps to not talk while eating and to not drink through a straw.

• Foods which produce gas are the following: beans, broccoli,  Brussels sprouts, cabbage, cauliflower, corn, cucumbers, dairy products, dried beans, mushrooms, onions, peas, radishes, spinach, string beans, sweet potatoes, yams and yeast. 
• Drinks which produce gas are carbonated drinks and beer.
• Chewing gum also produces gas.

Effect Of Food On Odors 

Some foods increase food odors and others decrease them.

• Foods which form odors: asparagus, beans, broccoli, brussels sprouts, cabbage, cauliflower, cheese, eggs, fish, garlic, onions, peas and turnips. 
• Drinks which increase odor: alcohol
• Foods which decrease odors: buttermilk, cranberry juice, tomato juice, orange juice, parsley, and yogurt. 
• Spearmint decreases odor.

Effect Of Food On Stool thickness 

Some foods tend to thicken stool. Others tend to loosen stool.

• Stool thickening foods: apple sauce, baked apples, bananas, bread, cheese, creamy peanut butter, marshmallows, pasta, creamy peanut butter, potatoes (without skin), pretzels, pudding, rice, tapioca, yogurt.
• Stool loosening foods: avocado, beans (black, brown, kidney, lima, lintels, pinto, soy beans), brown rice, chocolate, fiber-rich cereal, fried foods, fruit (apples with skin, grapefruit, papaya, pears, raspberry), grape juice, greasy foods, high sugar foods, highly spiced foods, leafy green vegetables such as broccoli, lettuce, and spinach), oats, potatoes with skin, prune juice, raw fruits, raw vegetables, spicy foods, string beans, sweet potatoes, turnip greens, wheat pasta, yams.

Foods Which Can Cause Blockage

The following foods can cause blockages if not chewed well: celery, coconut, dried fruits, mushrooms, nuts, popcorn, raw crunchy vegetables.

Substances Which Change The Color Of Stool

• Beets cause poop to be red
• Asparagus, broccoli, spinach (and Pepto Bismol) can make stool dark - even black.
• Bile that cannot be reabsorbed in the intestine can cause a yellow or green stool color, especially when diarrhea or rapid bowel action occurs.

Foods Which Do Not Digest Completely

• Apple peels, cabbage, celery, coconut, corn, dried fruit, mushrooms, nuts, pineapple, popcorn, seeds, skins from fruits, skins from vegetables

• Think about what you already own that you can easily carry with your all the time to record what you eat and drink and what happens. This can be small notebook, index cards, or perhaps a telephone which has a notes section.
• Make note of everything you eat as you eat it or immediately after eating. Do not rely on your memory - even for an hour or two.
• For each day, record the following 
  • Food
    • What food
    • How the food is cooked (for example, boiled, steamed, fried, grilled)
    • How spicey the food is (for example, on a scale of 1 - 5)
    • The amount or size. (If you know the measure, perfect. If not, use approximations, such as "fist size". To help make your descriptions consistent, consider writing a separate page of descriptions that work for you that you can refer to.)
    • The time
  • Liquid
    • Identify the liquid (water, Pepsi, orange juice etc)
    • Quantity
    • Whether it is hot, cold or room temperature
    • The time
  • Effects, such as:
    • Gas
    • Odor
    • Poop (including whether it is solid, soft or runny)
    • The time
  • The type, amount and time of exercise.
  • Non-food related occurrences that could affect your digestion. For example, high stress at work, illness or death of a loved one, unusual financial difficulties.

Consider wearing loose fitting clothes such as training or jogging trousers with an elastic waist band that doesn't fit too tight, or wear pants that are one size larger than normal.

Darker clothing is usually more advisable than lighter clothing. Darker clothing:

• Makes some people feel safer
• Is less likely to show leaks.

Men:

• Consider pants such as those manufactured by Fostex. The waist band has velcro on both sides so the waist can be easily expanded. To find a dealer in  your area, click on: http://www.fostex.com/usa/

Women

• Wear clothing with a front fastener. It is easier to get to the stoma to take care of it when necessary - espeically if you are out of the house.

Discuss your sexual concerns and issues with your partner or person with whom you want to have sex.

• If you keep the matter to yourself while changing your behavior, it  will send mixed signals which can easily be misinterpreted as a lack of interest in sex or in the other person.

When communicating, consider using the rule: state a belief, then a fact, then an action. For example: 

• A fact: Ever since my cancer diagnosis, we stopped cuddling and having sex at night. 
• A belief: I believe you are not attracted to me any more. 
• A feeling: This makes me feel sad. 
• An action: What I need is for you to cuddle with me at night, or reach out to me at least once a week for sex. 

Approach the subject openly, Being open avoids blame, helps you stay positive, and gives your partner a better sense of how you are feeling.

Ask the other person to discuss his or her concerns and issues.

• It is not unusual for other people to be confused about how to behave. There may be an underlying fear or anxiety that can be reduced or eliminated with communication.
• Try to be open-minded as you listen to your partner's point of view.

Be patient.

Keep a sense of humor. A sense of humor is a must. (If you have difficulty finding humor in the situation and/or in life, you can learn tips by clicking here.)

Consider asking your partner to accompany you to your visits with your specialist. He or she can be part of the discussion about sex and intimacy issues, as well as about possible solutions. He or she can also act as a patient advocate. (To learn about the role of a patient advocate, click here.)

If sexual issues cannot be resolved between the two of you, consider meeting with a couple’s counselor or a sex therapist. You can locate a sex therapist in your area through a social worker at your cancer treatment center or through the American Association of Sex Educators and Therapists, www.aasect.org

More information about this subject is contained in the Main Article in "To Learn More."

Swimming is okay if the ostomy is sealed.

Each time before you go for a swim, test that your equipment sticks in water. One way to test your equipment is to get into a bathtub with your appliance submerged for at least 15 minutes. Wiggle and stretch to mimic swimming motions.

For information about travel with an ostomy, including travel by car and by air, including packing for travel, click here. 

Ostomy should not prevent exercise.

• The main precaution if you have an ostomy is to avoid contact sports because a blow could result in injury to the stoma and because the pouching system could slip or become dislodged.
• Weight lifting can result in a hernia at the stoma.
• Strengthening exercises can still be performed.
• Consider working with a physical therapist to develop a strengthening program that minimizes intra-abdominal pressure.

Swimming is okay if the ostomy is sealed. Each time before you go for a swim, test that your equipment sticks in water. One way to test your equipment is to get into a bathtub with your appliance submerged for at least 15 minutes. Wiggle and stretch to mimic swimming motions.

Whether to tell co-workers about an ostomy generally depends on your work environment and job.

For example, if you are a Wall Street securities analyst or an attorney where image has a lot to do with the evaluation of your performance, you may not want to tell co-workers about either your illness or treatment.

On the other hand, if you work in a job that is about helping other people, it may be easier to share the information. Likewise if you work in a situation where people are aware of your toileting habits and you need the toilet frequently during the day.

If your job involves heavy lifting, you have no choice but to tell your employer and co-workers about your ostomy.. Otherwise it is up to you whether to tell co-workers and/or your employer about an ostomy.

If you do tell, educate co-workers about your cancer and treatment so they will understand what you are dealing with – and not dealing with. Also let them know that your cancer is not contagious. (Yes, there are still some people who believe cancer is contagious). 

If you work for a large employer, you can seek out other people with a similar situation for mutual support and information sharing. 

In any event, start keeping a work journal “just in case” you begin to feel you are being discriminated against because of your health condition. To learn how, click here. 

To learn about legal protections against discrimination because of your situation, click here. 

Somas and bags do not have to be visible under clothes. Stoma bags and base plates are made of flexible materials which hug the body. Unless the bag becomes too full or clothing is see through or ultra tight, it will not be seen. Even if it is seen, most people will not know what they are seeing.

Still, there are clothes made especially for people with ostomies. For example,  www.OstomySecrets.com ,  sells products such as underwear for men and women and swim wraps that conceal and support ostomies. All employees have ostomies. 

Some people choose shirts and pants that open in the front to make it easier to access the pouch for cleaning.

WOMEN:

Consider having lingerie or sleepwear made to order at a local store or online.  For example, we found the following stores on line. If you use then, please share your experience via e mail to: Survivorship A to Z

• www.SlipsAndLace.com
• www.Trashy.com  (sexy lingerie)
• www.Treehugger.com. Click on: http://www.treehugger.com/style/sandmaiden-sustainable-made-to-order-lingerie-sleepwear.html
• in London: http://www.rigbyandpeller.com/customer-services/madeToMeasure.aspx

If you are handy with a needle, consider making your own pouch cover. Instructions with photo illustrations are available at: www.stomaatje.com/clothing.html  (Search on "Make Your Own Covers")

Ask the surgeon what to do to prepare for surgery, and what to do afterward. For tips on preparing for surgery in general, click here.

You will not be allowed to leave the hospital until you have a bowel movement. This demonstrates that the body is working 

After a resection, bowel movements can be more like pellets and there is a need to go often. Then bowel movements start to get larger and the need to go becomes less frequent. it can take 3 months or so to return to relatively normal bowel movements. It takes time for the body to remember that the system has been reconnected.