The Newsletter of The Winnipeg Ostomy Association


March/ April 1998


WOA Meets With Manitoba Minister of Health


Inside This Issue

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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
.

Meeting With Hon. Darren Praznik

The Winnipeg Ostomy Association met with the Provincial Minister of Health on February 5, 1998. A delegation consisting of Dave Page, Stan Sparkes, Christel Spletzer, Bill Aiken and Mike Leverick met with the Minister, his senior policy advisor, Robert Rauscher and the Home Care Branch CEO, John Borody.

The meeting was requested to discuss concerns about the Manitoba Ostomy Program being adversely affected by the regionalization of health services in Manitoba, to introduce the Minister to the Winnipeg Ostomy Association and inform him of ostomates' special health needs.

We were assured that the central distribution of ostomy products and services would not be dismantled upon the implementation of the Regional Health Authorities on April 1, 1998. Some changes in administration and financing will be required to accommodate the regional system but these should not affect the delivery of services by the Manitoba Ostomy Program.

A good exchange of information took place and we felt that the Minister has a better understanding of the special requirements of ostomates within the health care system. He was open and forthcoming during the meeting and told us to contact his senior policy advisor directly if we had any further concerns.

The delegation felt that the meeting was worthwhile and productive. We appreciated the time and attention given to us by the Minister and his aides. We feel confident that any future concerns that we have about the Manitoba Ostomy Program will be reviewed by the Minister and judged on merit.


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From the President's Desk

A FORK IN THE ROAD

This past December the Winnipeg Ostomy Association celebrated our 25th anniversary. At that time we were able to reflect over those years of very hard working and dedicated people who formed the association back in 1972, and those volunteers who have carried on the work to the present time. I felt a mood of pride and accomplishment at our celebration. I also believe all of us are challenged by those accomplishments.

Most of us have benefited from the excellent visiting program of the WOA. In the month of January 1998, nineteen visits were made and the need is ongoing.

An increasing area of activity is advocacy. Over the past 5 or 6 years, the WOA has been quite active in lobbying the provincial government. Without this activity it is quite apparent the Manitoba Ostomy Program, which is advantageous to us all, would be in serious jeopardy. Elsewhere in this newsletter you will read of the recent meeting between representatives of the WOA and the Hon. D. Praznik, the provincial Minister of Health, concerning the effect of the Regional Health Authorities on the Manitoba Ostomy Program. We will be monitoring this issue very closely. That is the plan provided we have enough active bodies and support to maintain our lobbying efforts.

Last year, two members of the executive stepped down. One position was filled at the elections in April, but the other remained vacant until September. This year more of our executive will not be standing for reelection. Our Treasurer, Betty Friesen, has indicated the need to identify her successor for some time, indeed this is mentioned as far back as the September 1996 newsletter, however, most graciously she has carried on. The need is urgent! Now!!!

Two years ago I responded to an appeal similar to this (I had only attended 3 meetings in the 4 = years since my surgery in 1991) when my predecessor stepped down. Two years have passed very and have been enjoyable and fulfilling, so much so, that I have indicated to the executive and now to you that I am standing for reelection.

There are also various committee positions that need to be filled. One in particular, Chair of the Library committee, has been vacant since 1996.

Election of Officers for the coming year will be held during the monthly chapter meeting on April 15th, 1998. Mike Leverick is chair of the nominating committee and he would appreciate hearing from you. Ostomate or not, please volunteer.

One fork in the road leads to a dead end, the other toward and beyond our 30th anniversary in 2002. Which road will we follow? It's up to YOU!

Dave Page,
President, WOA


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1997 Income Tax Receipt

The Home Care Equipment and Supplies Income tax receipts were sent out by the Materials Distribution Agency (MDA) last month. Account reviews were included with the statement and many people were shown owing the MDA money. No explanation was included with the statement and this left many people running to check their receipts to see where they had gone wrong! The mistake was not with the clients but with a computer error caused by the amount people were charged on their shipping receipts not being "correct". The MDA's price for supplies was not accurately reflected on their bills resulting in people not being charged the correct amount. I have been told that the MDA handled any questions about this issue promptly and politely but an explanation should have gone out with the statement. This would have saved a lot of time. Imagine if Eatons or The Bay sent you out a bill at the end of the year saying that you owed them more money even though you had paid the full amount of the bills each month. I'm sure a very thorough explanation would have been included! MDA's Tracey Danowski will be at the April fifteenth meeting and I'm sure will be glad to answer any further questions people may have on this subject.
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Ostomates Receiving Chemotherapy

All Ostomates

1. Peristomal skin reactions

2. Stoma reactions

a. Stomatitis - small ulcers may appear on the stoma as on rest of gastrointestinal tract (for mouth ulcer treatment, use = strength peroxide rinses. 4 to 6 times daily).

  1. Physician may recommend that stoma dilations and irrigations be stopped until stomatitis resolves itself.
  2. Don't use solvents or irritating substances on stoma.
b. Due to decreased platelet count, stoma may bleed when touched.

3. Increased need for hygiene due to low white cell counts - peristomal skin may be more prone to infection. If wearing permanent pouches, it may be necessary to change to wearing disposable pouches, to help increase cleanliness.

Colostomates and lleostomates

1. Diarrhea - possible reaction to chemotherapy. Monitor amount of stool output; inform physician if increased significantly above normal.

a. Drink adequate amounts of fluid - at least 10 to 12 glasses a day: may be difficult due to nausea medicine taken prior to meal times.
b. Eat foods to help thicken stool, i.e. applesauce, cheese, white rice, bananas, peanut butter, plain tea and boiled milk.
c. Stay away from fatty foods, highly spiced foods and foods are beverages which cause gas or cramping.
d. Potassium is lost in diarrhea and needs to be replaced. Foods high in potassium are bananas, fish, potatoes, apricot or peach nectar, meat and Gatorade. Physicians may order potassium supplements.

2. Constipation - an occasional reaction to chemotherapy (may also be a reaction to some pain medications, such as codeine.)

a. Drink adequate amounts of fluid - at least 10 to 12 glasses of water daily. Prune juice daily may be helpful.
b. Eat foods with a laxative effect, i.e. raw fruits and vegetables, chocolate, coffee, fried foods, cereals, bran, whole wheat bread, dried fruit and nuts.
c. Try to stay away from strong laxatives.

Urostomates

  1. Check carefully for skin infections, especially yeast - obtain physician's prescription for treatment with Mycostatin. powder.
  2. Some chemotherapy may turn urine colours - don't be alarmed. Adriamycin turns urine red, methotrexate turns urine yellow.
  3. If any blood is noted in urine, report to physician immediately.
  4. Some chemotherapy drugs need to be adequately flushed from the kidneys - cytoxan, cisplatinum. Drink adequate fluids - 12 glasses daily.
Via Saskatoon Ostomy Association Bulletin, via Regina Ostomy News, Nov/Dec 1997

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Diarrhea - Infections & Other Causes

Most people have frequent watery bowel movements for one or two days each year. Water and salts are lost from the body, but diarrhea usually disappears in a short time. If diarrhea lasts for weeks or months, though, it can be an indication of major disease. What are the causes of diarrhea? Simple infection usually caused by a virus. Or ulcerative colitis (when blood is usually present in the stool), disorders of the intestine that lead to poor food digestion, or nervous diarrhea.

Nervous diarrhea is very common and usually mild, often showing up briefly when we face stress, and causing little more than a day away from work and a few minor discomforts.

The common two-day illness, often called "intestinal flu", is due to one of several viruses that infect the bowel, making it weep fluid. The excess of fluid in the bowel leads to liquid stools and cramping abdominal pain. Infection of the stomach can occur at the same time, producing nausea and vomiting. This can lead to dangerous dehydration, particularly in those poorly prepared to withstand losses of fluid and salt, such as the very young, the old, and the sick. Anyone with diarrhea should be given fluids containing sugar, and preferably, salt. Non- diet drinks are a reasonable start, commercial quick-energy drinks such as thirst- quenchers - Gatorade, etc - containing sugar and salt are even better. If the patient cannot take fluids by mouth and is still vomiting after 12 to 24 hours, then medical advice should be sought, especially if the person is very young, old, or otherwise weak. Even when the consequences of fluid loss are more severe, the disease will cure itself. The treatment is simply the replacement of water and salt (by intravenous means, if the problem is severe). In other words, no special treatment is needed for the cause of infection.

The simple case needs only rest in bed, plenty of fluids by mouth, and perhaps a drug to reduce the diarrhea and abdominal cramps (such as paregoric). More severe cases might need hospitalization and intravenous fluids. Only occasionally are antibiotics needed. Most examples of travelers' diarrhea are inconveniences. Travelers should be careful about non-processed water and ice, unwashed or uncooked foods such as fruits and salads, and unlicensed sellers of food. If diarrhea is mild, bottled water or soft drinks will usually maintain hydration while the disease corrects itself. Antibiotics as a preventive measure are probably useful, but not usually necessary.

Medical advice should be sought before any drugs are used.

Via Anne Arundel County (VA) Rambling Rosebud, Dallas TX Ostomatic News, & S. Brevard (FL) OSTOMY NEWSLETTER(Nov/97)

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A New Treatment for Impotence

from Johns Hopkins

Researchers at Johns Hopkins and other institutions are currently testing a suppository made from prostaglandin E1, which is presently available as an injectable solution. The suppository can be inserted into the urethra using a slender plastic tube. Once inside, the prostaglandin diffuses across the delicate urethral membrane toward the blood vessels located inside the penis. As a result, the blood vessels widen, more blood enters the area, and the penis becomes erect. Suppositories can probably be used more often than injections, with less risk of penile scarring, shape changes, and prolonged erections - although further study is needed to confirm this hypothesis.

Researchers have also examined the possibility of using topical creams and sprays containing prostaglandin and other drugs (such as minoxidil, the baldness remedy known as Rogaine, and nitroglycerin) but according to Richard Allen, Ph.D., assistant professor of neurology at Johns Hopkins, while these approaches may help some patients, they'll probably be less effective than the suppository, because the tough skin on the penis hinders absorption.

Via Metro Maryland from Stillwater-Ponca City (OK) Ostomy Outlook Online, 11/97

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Visitor's Report

By Christel Spletzer

Patients with the following ostomies were visited in January and February:
Colostomy - 19
Ileal Conduit - 6
Ileostomy - 3
Pelvic Pouch - 0
Continent Urostomy - 0
Total = 28


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Ten Commandments for the New Ostomate


by Anita Price, via Rapides Parish (LA) CenLA Ostogram and Northwest AR Mail Pouch
  1. There is no answer for "Why Me?", but it is normal to ask the question and you need to work through the answer to this and other questions.
  2. Stomas change in size and shape the first few months after surgery. The initial swelling of your stoma will decrease and its diameter will decrease. Check the size of your stoma with a measuring guide every pouch change, until it stabilizes to its permanent size.
  3. Each person's ostomy is different even as our own fingerprints are different.
  4. Support and information from someone who has an ostomy can be helpful. Ask your doctor or E.T. nurse to arrange for an ostomy visitor.
  5. It is your ostomy. Learn to manage your ostomy and don't let your ostomy manage you! It is normal in the beginning for your ostomy to be the center of your existence; however, with time and practice, your ostomy and its care will become just a normal part of your daily life.
  6. Fundamental management techniques can be learned, and new experiences and any problems that may develop must be met and managed as they occur. As you learn and practice these new skills, you will become comfortable with your ostomy care. Do not confuse accidental leakage or spillage with what is normal or to be expected. If you have problems, consult your E.T.
  7. One of the most important goals for healthy living is good nutrition. The one difference in having an ostomy and setting your nutritional goals is that you need to take information provided for the general public and adapt it to your own needs, keeping ostomy management in mind.
  8. You are not alone! Surgeons make at least 500 ostomies every working day. One out of every 200 persons has an ostomy and over two million of us make up almost 1% of the US population. Support organizations are available to help you. There are over 1700 Enterostomal Therapists in the US and Canada and the United Ostomy Association has over 600 US chapters. [Ed. note: There are now under 500 US chapters; sadly, the number has been decreasing.]
  9. You're alive! You will get better and stronger as you recuperate from surgery. Give yourself time to get over ostomy surgery and to adjust to this body change and adapt to your ostomy.
  10. Share what you have learned with another new ostomate, with your family and friends and others. It is up to you who you tell you have an ostomy. As you grow accustomed to living with an ostomy, there will be opportunities to help others along the way. Remember your own experiences and the fear of the unknown and the helplessness until you met another who had travelled along the same road as you.
From Stillwater-Ponca City (OK) Ostomy Outlook Online September 1997

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Colostomy Noises

Colostomates are sometimes embarrassed by noises emanating from the stoma. These two kinds of noises, those caused by the escape of gas and some due to movement of the intestine. The latter is the "growling" stomach and nearly everyone experiences such noises at times. It is usually a good idea to have a little something to eat before going out because it is the empty stomach that growls. The escape of gas from the air we swallow with our food, or that we gulp when we are nervous. Gas can also enter the intestine from the bloodstream and even less common from fermentation of food. This is not common because usually the food has not been in the stomach long enough to break down. Drugs have been very disappointing in the control of gas. Pure charcoal seems to absorb gas better than any odor preparation. Tablets containing bicarbonate of soda can cause gas to be emitted from the mouth but some may also be expelled from the stoma.
Source: South Maryland, Genesee Valley; via Metro Halifax News, October 1997

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How Does A Sigmoid Colon Work?

The functions of the intestines with a colostomy remain the same as in the intact intestine, except:

1. There is a little less large intestine and storage area for solidification of intestinal contents and absorption of water.
2. Waste is now discharged through the colostomy.
3. The number of stools and consistency will gradually return to their usual pattern. Since the rectum is now gone, the normal urge to go to the toilet is not experienced. However, right after the operation, patients may feel "urges" and even have some discharges from the anal area; while it heals, the body needs to get rid of mucus and blood, and sometimes feces still remaining from the time of operation. In time, this will subside.

Managing A Sigmoid Colostomy

A sigmoid colostomy can be managed in several ways; by natural evacuation, dietary regulation, medication, irrigations, or a combination of these.

Natural Evacuation. It is possible to treat the bowel movement through a colostomy like a movement through the anus; that is, to let it come naturally as it will. Unlike the anal opening, the colostomy does not have a sphincter (muscular valve) which can stop the passage of a movement. Therefore, a receptacle must be provided to collect anything which might come through, whether it is expected or not. A great number of lightweight, practical and inconspicuous pouches are available which can easily be adhered to the abdomen around the stoma. These may be worn at all times, or as needed.

Dietary Regulation. One does not have to restrict one's diet because of a colostomy. You can eat the same foods you ate before surgery. Only a small portion of the colon has been removed. However, if you now find that any foods cause you bowel problems, such as unexpected elimination, either avoid these foods or be willing to adjust your management. Some people with a sigmoid colostomy find that, by eating selected foods at specific intervals, they can make the bowel move at a time convenient to them. After some time they may feel so certain of such a schedule that they wear a pouch only when a movement is expected. It may be possible to use this method as the only regulatory practice, or one may use it in addition to irrigation.

Via Metro Maryland & Green Bay News 11/97

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Patient Mistakenly Takes Bladder Home in Bag

Thirteen days after surgeons at a Richmond hospital removed her cancerous bladder, the female patient was shocked to discover that she unwittingly had carried the organ home along with her personal items in a hospital bag. On Tuesday, a home health nurse found the bladder wrapped in a surgical towel, sealed in a double plastic bag and tucked into the bag the patient took with her when she was released Monday from the hospital. "I never thought anything like that could happen in the hospital," the patient said. "My doctor's been looking for my bladder for almost three weeks." Hospital spokesperson said the specimen should have been placed in a hospital refrigerator so it could be examined later.

(GLO Contact wonders whether or not she had a visitor?)

Washington Post: Via GLO Contact, Feb 1998.

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Prostrate Cancer

Excerpted by Bob White from a presentation by Stuart N. Liberman, M.D.

In 1996, some 317,000 new cases of prostate cancer were diagnosed, with about 41,400 deaths directly attributed to it. Although it is a very slow disease, and while, in some men, we don't treat it after diagnosis, it is a lethal disease, and it's not a particularly pleasant way to end one's life. It is a curable disease, however, and, if found early enough, can be taken care of.

The increased incidence of new cases is due to several reasons. First of all, increased media attention tends to make more men concerned about the disease. Second, the use of the blood test for PSA prostate-specific antigen is more common. Third, the population is aging and it is a fact of life that, as men get older, they will develop some form of cancer in the prostate - a natural result of aging. The trick is to determine in whom the cancer is significant and in whom it is completely insignificant.

The prostate gland sits right under the bladder. Through it passes the urethra, which leads from the bladder to the penis. The role of the prostate itself is quite minimal - its sole function seems to be to provide a small amount of fluid to the male ejaculate during sexual activity. If you were to remove the prostate in a young male, it would have no effect upon his physiological well being, with the exception that his ejaculate volume would be a little smaller.

There are three well-known risk factors involved in disease of the prostate. One of these is age. Second is family history; if there is a first-degree relative in your family who has had prostate cancer, you have a two- to three-fold risk of developing the disease. Third, there is the race factor. We don't know exactly why, but blacks have a higher incidence of the cancer than Caucasians, and their cancers are relatively more aggressive. Other than these, there is no medical proof at this time that there are any other risk factors.

Detecting Prostate Cancer

How do we detect prostate cancer? The American Urological Association recommends that screening for the disease should be begin at age 40 for patients with a family history of the cancer, and for all blacks. For everyone else, screening should begin at age 50. The two primary methods for screening are the PSA blood test and the digital rectal examination, in which the prostate is felt with the finger to determine any abnormalities. Neither of these, separately, is as good as the combination of the two.

How can you be aware that you have prostate cancer? It's unfortunately true that, if you have a small tumor, confined to the inside of the prostate, you will have no symptoms. If the tumor grows larger, typical symptoms are difficulty in urinating, perhaps some blood in the urine. If the cancer has spread outside the prostate (metastatic cancer), it typically spreads to the bone - the spine, the hips, the ribs, or the long bones of the legs. As you can imagine, then, pain in the bones might be a symptom of disease that has already spread out of the prostate.

One problem with the rectal digital examination is that only about 80% or 90% of prostate cancers occur in the accessible side. A small percentage will be in the interior of the prostate, not available to a digital examination. Digital examinations, too, are subjective in nature. What is significant to one physician may not necessarily be important to another.

The PSA test has been used for about the last ten or twelve years. It is a good test, in that it is specific for the prostate; the antigens come only from the prostate. An elevated PSA level does not necessarily mean that you have prostate cancer, but it is a warning signal. If a patient has an elevated PSA, I look at not only cancer, but other causes as well.

The PSA test is rated in fairly familiar numbers. A reading of from 0 to 4 is considered "normal", from 4 to 10 is a gray area; from 10 to 20 is regarded as suspicious; over 20 is highly suspicious. We know that if you have a PSA of over 20, and don't have an active infection in your prostate, there is a very good chance of there being cancer. For the physician, the tough area is that from 4 to 10. Although not everybody in that zone has a prostate cancer; there is a 20% to 25% chance that cancer is present. Of course, this also means there is a 75% to 80% chance that the PSA reading is due to some other cause.

Any of several things can falsely elevate your PSA when no cancer is present - infection in the urine; infection in the prostate; stones in the prostate (not uncommon as we grow older); and quite commonly, an enlarged but benign prostate, which will leak PSA into the blood stream.

The third tool used in diagnosis is the ultrasound, which we use as a tool in performing a biopsy of the prostate. Biopsy is the only sure test for presence of a cancer, and in obtaining this sample the ultrasound is of vital assistance. The ultrasound procedure consists of the insertion of a probe through the rectum to the prostate. The probe has a very sharp needle that rapidly and repeatedly penetrates the prostate, giving us our biopsy. We take biopsies from as thorough a sampling of the entire gland as possible. This can provide us with a valid diagnosis of cancer in the prostate. Most patients undergoing the procedure agree that it's uncomfortable, but not horribly painful. We do not use anesthesia for the procedure.

In the case of persons who have no anus, such as ileostomates we must, unfortunately, rely primarily on the PSA test. There is no other way that I know of to diagnose the cancer. It was recommended at one time that the prostate be removed at the time of the surgery to remove the colon and close off the rectal area. However, it proved to be too much of a shock to the body to do additional surgery at that time. Removal of the prostate is a major operation, and has substantial risks of its own.

(This is the first part of a two-part article. The second part will be printed in the next issue)

Via S. Brevard (FL) OSTOMY NEWSLETTER. (Jan/98)

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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).
Last updated June 15, 2001. Comments to: Mike Leverick