The Newsletter of The Winnipeg Ostomy Association


May/June 1996


Inside This Issue

Links to back issues:
September/October 1995 Issue
November/December 1995 Issue
January/February 1996 Issue
March/April 1996 Issue
Link to "Inside Out", Inside Out Home Page

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NOTICE

Articles and information in this newsletter are not necessarily endorsed by the Winnipeg Ostomy Association and may not apply to everyone. It is wise to consult your E. T. or Doctor before using any information from this newsletter.


New Meeting Format

The executive has decided to change the general meeting format. We will be asking the membership, at the May meeting, to move the meeting time from 8:00 p.m. to 7:30 p.m. This will allow for extra time during the meetings. We are going to concentrate on ostomy related issues only during the meetings and also have a "small group sharing" time during each meeting. This will allow members to exchange hints and ask questions of other ostomates, as well as sharing feelings and experiences.

The business part of the meeting will be kept as short as possible and the refreshment period will be scheduled before the sharing segment of the meeting. A typical meeting agenda might be:

The September meeting will begin this new format.


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We Need Your Help!

The future of the WOA, your organization, is in jeopardy, for lack of membership involvement. In particular, there are a number of committee positions unfilled that may result in an inability of the WOA to continue offering services to the membership and community. We need people to come forward to help us with: Of most pressing concern is the fact we have no one to replace our current president, Stan Sparkes. This void alone could mean the decline of the organization's abilities.

Anyone who has an interest in this position, or any of the others, is strongly urged to seriously consider stepping forward. Volunteers will be given the full support of the executive to assist them.

If interested, please phone or speak to one of the current executive members.


Update:

We have a President. Mr. David Page was elected at the May meeting. Thanx Dave!


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Annual Election Results

Elections were held at the April 17, 1996 meeting.
The positions for 1996-97 are:
EXECUTIVE

President: VACANT
1st Vice President: Elenore Schmidt
2nd Vice President: Mike Leverick
Visiting Chairperson: Christel Spletzer
Treasurer: Betty Friesen
Secretary: Gary Keedian
Past President: Stan Sparkes

COMMITTEES

Refreshments: Anne Lecot
Social Convenor: Barbara Pryce
Public Relations: vacant
Library/Tapes: vacant
Transportation: Audrey Foreman
Newsletter:
Editor: Mike Leverick
Mailing: Elenore Schmidt
Visiting Assistant : Patricia Briggs
Cancer Society Rep.: Keith Beard


Update:

We have a President. Mr. David Page was elected at the May meeting. Thanx Dave!


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Annual Treasurer's Report

WINNIPEG OSTOMY ASSOCIATION INC.
Winnipeg, Manitoba, Canada.

STATEMENT OF CASH RECEIPTS AND DISBURSEMENTS
for the year ended December 31, 1995

RECEIPTS
Membership dues $8,435.00
Donations $2,654.74
Interest $921.49
Other receipts $536.67

$12,547.90

DISBURSEMENTS
United Ostomy Assoc. dues $6,051.00
Camp sponsorships $676.70
Newsletter $1,753.71
Literature $274.00
Meetings and Travel $1,073.60
Donations:
St. Boniface Hospital Research $350.00
Canadian Cancer Society $350.00
Party and coffee expenses $616.45
Office $419.00
Miscellaneous $334.14
F.O.A. membership $150.00

$12,048.60

Cash receipts over disbursements $499.30
Cash on hand, beginning of year $15,497.78
Cash on hand, end of year $15,997.08

Cash on hand consists of:
Chequing account $3,658.31
Monthly Saving account $11,338.77
Term deposit $1,000

$15,997.08


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Chemo Cuisine

It sounds so easy. "Just eat anything you like." I was ready. But it's not so simple. After heavy chemotherapy, which can upset the digestive system and play havoc with appetite, we cancer patients are told to eat in order to regain strength. But I found out there's a lot more involved than just doing it.

Hundreds of suggestions for what I should eat and what I should avoid abounded. But few consider how taste, texture, or tummy tension affect a body ravaged by chemo. Often overlooked is the fact that the dry mouth and steady metallic taste caused by drugs can alter the taste of foods, making them unappealing and downright difficult to swallow, even when the stomach has settled down and can accept food. If a patient takes a bite and gags, don't be surprised. After a summer regiment of heavy chemo, I was dismayed to find that my favourite foods, including fresh berries, smelled delicious - but tasted like cardboard.

It was so frustrating! After all, I had progressed from the nausea that makes even the thought of food sickening, to actually wanting to eat. But finding foods and drinks that tasted good and didn't leave a tinny aftertaste was impossible. I ended up dehydrated.

Fortified drinks for athletes, such as Gatorade, which seemed so ideal, tasted horrid. I couldn't handle most soft drinks, including subtle ginger ale and tonic, although for a time I did guzzle ginger ale because it was the least offensive. While carbonation was appealing to anticipate, it didn't taste good or sit well in my stomach. Sparkling water sometimes satisfied, particularly one raspberry-flavoured brand.

Most fruit juice was too sour or tasted like medicine, although tomato juice eventually became tolerable. Coffee was terrible. Milk was out because it gave me diarrhea. I finally settled on iced lemon herbal tea. For several weeks it was the drink of preference, although I'd never liked any kind of tea previously. But eventually, tea, too, lost favour as my taste buds changed.

As far as solids, now, eight months after treatment, I still favour moist foods - fruit and vegetable salads, or plain fruit and veggies, and light soups. I go easy on drier foods such as potatoes, bread, and sandwiches.

Peanut butter, a long-time favourite and good protein provided, is palatable only where stuffed in celery, that moist crunchy has become a favourite snack. Applesauce has become a staple. Rolls or bread (in sandwiches, toasted, or plain), muffins, chips, and crackers - even delicious, gooey cinnamon rolls - still are dry and seldom appeal.

At a time like this, it is hard to find foods for snacking. Fruits seem to be the best and, surprisingly, dried prunes, apricots, and raisins were palatable from the beginning. Fortunately, rice pasta, and beans met my taste test early on, and provided nutrition. Enhanced with tomatoes, but not many spices, these became staples. Light soups and stew, with beef or chicken, and lots of vegetables, sometimes with a little gravy, also helped keep my going when eating was still a chore.

Open-faced sandwiches made of moist mixes, such as egg salad or tuna or chicken salad work well for me. I avoid sliced meats and cheese. Some fish can be dry, so it often needs to be sauced or steamed, rather than deep fried or baked. I stay away from greasy foods.

However, food preparation itself can be difficult. Food odors can be a major problem. The smell of meat frying or barbecuing, and onions sautiing send me right out of the house.

Through my cancer treatment, I learned to face one day at a time. Advice given to people fighting disease is just as valid when applied to eating. Take one bite at a time - frequently. And keep experimenting, because taste and appeal can change quickly.

Via N. Virginia's The Pouch & S. Brevard (FL) OSTOMY NEWSLETTER


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For the New Ileostomate

Provided by Mayo Clinic, Rochester MN

Did you have your rectum and anus removed as part of your ostomy surgery? If so you have what is called a perineal wound. the gap left in the perineum when the rectum and anus were removed requires a great deal of care.

The perineal area can be quite tender and sore for a long time. You may feel like you will never be able to sit comfortably again. Eating and watching TV standing up is no fun! The area may take a long time to heal, because it takes a long time for the scar tissue to fill the opening. How long? The amount of time varies from person to person. You may find the wound has healed completely in two months. Sometimes it may take more than a year. That's quite a range. What factors contribute to this range? Consider the following questions. How extensive was the surgery? What kind of operation was it? How big was the wound itself? What was your surgeon's choice of procedure for closing the wound? Are you eating properly? How active are you? Aren't these exciting questions? Hold on, there's more! What was your physical condition before surgery? Did you have any pre-existing scar tissue in the area? What shape is your pelvis (no photographs please)? Have you been using any medications, such as steroids (which slow down healing)? Enough already. The answers may have a bearing on how long it takes for perineal wounds to heal.

Another problem is that the perineal wound does not usually have such a good flow of blood. Good blood circulation is very important in promoting healing. It is important that the outer part of the skin does not heal before the inner part. If this occurs, abscesses or fistulae may form. Fluid may accumulate in these areas, forming pockets, and infection can set in. What do surgeons do to try to prevent this from happening? Some surgeons pack the wound with gauze and leave it open. This allows it to heal from the inside out, with the opening getting smaller and smaller. Other surgeons believe that the skin should be stitched together. This requires drainage tubes, so that the blood or other fluids may drain out of the area. Absorbent pads may be used to absorb this discharge. As healing takes place the amount of discharge decreases.

So What Can You Do?
While you're waiting for the perineal area to heal, you'll be more comfortable sitting on a soft cushion. But it is not usually a good idea to sit on a "doughnut", or a cushion with a hole cut in the middle. This might cause the skin to pull outward, putting more strain on the perineal area and produce pain! Stretching the area can also slow down healing.

Sitz baths can be both soothing and helpful. Park your derriere in warm, circulating water. Not only is this pleasant, relaxing and comfortable, but it can stimulate better blood circulation. This promotes healing.

To reduce the healing time for perineal wounds, keep the area clean! Avoiding infection is a must! In addition to washing the area, using sitz baths or direct cleaning, another procedure that is occasionally used is called "lamping". A special lamp (you can even use a regular incandescent lamp) is placed where the heat generated from the light can help dry the area completely. There is very little irritation, since no skin is touched.

Finally, Beware of the "Phantom"
Did you ever hear of the "phantom limb" phenomenon? That's when someone has a limb amputated, but feels as though it's still there. You may even have an occasional desire to look and see if it is still there. This phenomenon also occurs when the rectum has been removed. "Phantom" rectal feelings can give you the feeling of a full bowel, along with the need to defecate. Sound strange? Be assured that this feeling is not unusual. It doesn't mean that any part of the perineum has been left intact. Phantom sensations will decrease in time. But if you are uncomfortable, sometimes just sitting on a toilet for a short period can help. This will reassure you that the feeling is a phantom one.

Via Vancouver Ostomy Highlife, 11/92


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Visitor's Report

By Christel Spletzer

1995 ANNUAL VISITORS REPORT

I would like to thank all visitors of the Winnipeg Ostomy Association for the dedicated service you are giving to patients that are faced with adjustments after surgery. The positive responses I get, attest to the success of the program. In 1995 , a total of 89 visits were made.

These visits were as a result of the following types surgeries:

Most post-operative visits were made at the Health Science Center and at the St. Boniface General Hospital. Phone visits have been in demand, especially for out of town patients.

The visitors training program did not take place in 1996. The list of visitors has been quite adequate and does not overload a few people. At this point, I would like to pay a special tribute to Lee Tolsma, who has been a very faithful visitor with the Ostomy Program.

The Visiting Program is a most valuable aspect of any Ostomy Association. It deserves the support and encouragement of the Association.

Christel B. Spletzer
Visiting Program Co-ordinator


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A Experience is the Best Teacher

Having an ileostomy does require some patience, I'm afraid. Even though, as a person with an ostomy, I have a 100% better quality of life than I did when I had ulcerative colitis, there are, of course, some minor drawbacks. One of which are pouch leaks - infrequent but unpredictable. The best approach to these situations is to be calm and relaxed as best one can. I have had several accidents (pouch leaks) in the last three years, and have dealt with them in various ways.

In the beginning, I would get frantic and anxious, and thought that this was the ultimate in disasters. I really did not have the coping skills to deal with a half-full or full pouch coming off or leaking. Almost always, it was due to my not completely clicking the two-piece together, or not closing the end of the pouch completely. My first reaction was horror - "now what can I do?" . Of course, the answer was obvious. I clean myself up, throw out the pouch that leaked or fell off, put on a new one and go about my business.

However, in the early months after surgery, I was very apprehensive that an "accident" was going to occur and I really was not prepared as to how to deal with one. By now, I have experienced occasional leaks and know what to do.

These are my suggestions:

Via Metro Maryland & S. Brevard (FL) OSTOMY NEWSLETTER
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Sex After Ostomy Surgery

The following are a few suggestions regarding sex after ostomy surgery. They may be helpful to minimize anxiety and problems with spontaneity and confidence during sexual intimacy. Empty your pouch before sexual activity. - If possible, wear a stoma cup or closed mini-pouch. - Try wearing a cloth pouch cover that resembles your underwear (e.g. lace).

If you are experiencing difficulties and have concerns regarding your ability to have or enjoy sexual relationships, consult your physician or E.T. nurse for advice and support.

Vancouver Ostomy Highlife; via Metro Maryland


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Coping With Infection

The word infection is somehow "mysterious" to many. It is true that our bodies contain many normal bacteria. We do not live in a sterile world. We humans have natural immunity to many of these organisms. Some of them are even helpful in keeping down growth of more harmful bacteria.

"Infection" occurs when the number of organisms exceeds the body's ability to handle them. Some of the first signs in the area of a wound are redness, swelling, pain on touch and often the patient has a fever. What is important is to report such symptoms to your doctor before it becomes serious. Often, the physician will want to culture the drainage to determine what organisms are present. Different ones respond to different methods of treatment. Besides local cleaning of a wound, an antibiotic is often prescribed to treat any infection that is in your system. The same thing doesn't work for everything. Don't just decide to take your friend's medicine or give him some of yours without getting medical recommendation. The good news about infection is that with today's drugs, they are more easily cured.

Many patients having ostomy surgery worry about bacteria. Those with colostomies and ileostomies ask if their stomas will become infected from the discharge of stool. THIS IS A MYTH! The stoma is accustomed to the normal bacteria in the intestine. Keep the skin around the area clean and be careful of adjacent wounds. You want to keep the fecal drainage away from the incision. Don't worry though about the ostomy becoming infected from the normal discharge. Nature has provided well. Our bodies are accustomed to certain bacteria.

The urinary ostomy patient is more likely to be susceptible to infection than the other types of ostomies. Urine is normally sterile.

IT IS IMPORTANT TO KEEP THE URINARY POUCH VERY CLEAN.

On days that it isn't changed, it should be rinsed with a solution of 1/3 parts white vinegar to 2/3 parts tap water. This can be allowed to run up over the stoma and will also prevent crystals. The vinegar produces an acid environment in your pouch. Bacteria cannot multiply as readily in an acid condition.

YOUR NIGHT DRAINAGE POUCH SHOULD BE CLEANED DAILY. White vinegar and water can be used for this too. Perhaps some of you use a special ostomy disinfectant or diluted lysol solution. When the drainage bag has sediment that cannot be removed by cleaning it, and should be discarded. Saving a few pennies by using it too long can cost more in the long run if you have to treat infection.

Drinking plenty of liquids is important for all ostomates, but especially for the urostomy patient. Many urologists also prescribe Vitamin C to help keep the urine acid and less susceptible to infection. (Check with your doctor about this first, as some persons have reasons that would be exceptions to this). Cranberry juice helps to keep urine acid. Many people laugh at this theory but it is helpful to a lot of ostomates. You would have to drink a number of glasses to equal what is in Vitamin C tablets. Your doctor might prefer that you take the tablets.

What are the signs of urinary infection? Fever, pain in the region of the kidney, very strong odor to urine, excessive mucous. (All urinary ostomies produce mucous. You learn what is normal for you. When it is excessive, you will be aware of a difference).

Urinary pouches should be changed regularly. People wear them for a day to a week. It is advocated that you do not keep any ostomy pouch on for more than seven days. For one thing, the skin under it should be inspected at least that often.

A common peristomal skin infection is from yeast and is characterized by little white pimples. Mycostatin powder, which is specific for yeast is a prescription item, usually clears this up. If not see your doctor and enterostomal therapist.

Source: Liz O'Connor, RN/ET Kokomo Chapter; via Genesee Valley,; via Metro Halifax News, March 1996


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A Rose By Any Other Name. . .

In a newsletter discussion group I attended at the UOA Conference in San Diego last August (I 993), one of the leaders brought up the supposed problem of using the words "ostomate" and "ileostomies" on our mailing to our members. The moderator noted that, recently, a person with an ostomy had successfully sued a local chapter for "invasion of privacy" for having mailed material (a chapter newsletter, if I remember correctly) that bore the name of the organization. From the discussion I learned that many or most chapters have purposely deleted those words from their mailings.

Then I recalled a conversation with Clair LeCompte, one of our chapters' past presidents, who once asked me to help write something because she needed another word for "ostomate." I suggested "People-with-Holes-Poked-in-Their-Bellies," but that was obviously facetious. Our conversation ended with my belief that no other word was as accurate or appropriate. In thinking of this problem at the Conference, I initially came up with "Holier-Than-Thou." I rejected that term as being too fraught with religious implications. Next, I came up with what may address everyone's concerns, and which has some rather significant historical justification.

The new term for an ostomate could be "Vesuvian," especially if the person has an ileostomy. This term adequately and appropriately reflects an ostomates situation. This "thing" we all now bear has the potential for erupting at any moment and, if proper precautions have not been taken, innocent bystanders in the immediate vicinity could well be in danger. Keep in mind that Pompeii gained its historical significance by being buried by Mount Vesuvius.

All this serious thought led me to the same conclusions that I had reached with Clair a few years ago: no other word describes our situation as well as ostomate does. In its simplest terms, the supposed "stigma" of being an ostomate stands as just another form of prejudice or discrimination. As with most other forms of discrimination, the worst offenders occasionally are those people who are members of the group. The need for the UOA and its affected chapters is only underscored. We not only need to help in the rehabilitation of ostomates, but we must also continue to educate those with, in addition to those without, an ostomy.

Source: Excerpted from an article by Stan Baker (Director, UOA); via Okanagan Mainline & Ostomy Highlife; via Metro Halifax News, February 1996.


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Clinton Healthcare Team Medical Terminology

by Tongueincheek

Many people on the Clinton Healthcare task force are from Arkansas. At first, the medical terminology being used by those witnesses appearing before them was completely foreign to the panel. However, they are a clever group, and soon devised this "cheat sheet" that allowed them to quickly understand the dialogue, and stay up to speed.

ARTERY - the study of paintings
BACTERIA - back door of a cafeteria
BARIUM - what doctors do when a patient dies
CAESARIAN SECTION - a neighbourhood in Rome
CT ("CAT") SCAN - searching for kitty
D&C - where Washington is
COMA - a punctuation mark
DILATE - to live a long time
ENEMA - not a friend
FESTER - quicker
FIBULA - a small lie
IMPOTENT - distinguished, well known
LABOUR PAINS - getting hurt at work
MEDICAL STAFF - doctor's cane
MORBID - a higher bid
NITRATES - cheaper than day rates
NODE - was aware of
PELVIS - a cousin of Elvis
POST OPERATIVE - a letter carrier
RECTUM - dang near killed'em
SECRETION - hiding something
SEIZURE - Roman emperor
TERMINAL ILLNESS - getting sick at the airport
TUMOUR - more than one
URINE - the opposite of "you're out"
VARICOSE - nearby
VEIN - conceited

Vancouver Ostomy Highlife; via So. Nevada's Town Karaya


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Editor's Comment

This is the electronic version of The Winnipeg Ostomy Association's newsletter, Inside Out. The newsletter includes articles from other United Ostomy Association chapter newsletters and these are credited at the end of each article. Please credit the source as well as Inside Out if you wish to use any of this newsletter.

LETTERS TO THE EDITOR & SUBMISSIONS

Submissions and Letters to the Editor can be mailed to:
The Editor, Inside Out,
130 Woodydell Ave,
Winnipeg, Manitoba,
Canada. R2M 2T9.
All submissions are welcome, may be edited and are not guaranteed to be printed (but I'll make every effort).
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Last updated June 15, 2001. Comments to:Mike Leverick