Calgary, Alberta, in June of nineteen ninety-seven was a great place for a Canadian ostomate to be.

U.O.A. Canada held it's first general meeting on Canadian soil on Sunday the fifteenth. At that meeting, delegates from Canadian U.O.A. chapters voted 42 to 2 to support the formation of a separate Canadian association and to disaffiliate from the United Ostomy Association, a United States based organization.

The United Ostomy Association, from its earliest days, has been a joint United States and Canadian association. Without its help and support over the years, Canadian ostomates would not have achieved the great gains in quality of life that have been made since the U.O.A. was formed. We, as Canadian ostomates, realize how much the United Ostomy Association has done for us and we shall be forever grateful. They have helped us get into a position where we can test our wings and fly, as an independent, uniquely Canadian organization. Thank you United Ostomy Association - we'll stay in touch.

Here in Winnipeg we shall part ways with our friends in the North Central Conference of the U.O.A. We will stay in touch through continuing to exchange newsletters and hope to be invited to the next North Central Regional Conference.

After the historic U.O.A. Canada meeting on Sunday, the International Ostomy Association's 9^th World Congress took place. Maria Siegl, Chairman of the Congress Organizing Committee and President of U.O.A. Canada, and her eager crew of volunteers put on an excellent conference. It was fitting that Canada hosted the occasion as U.O.A. Canada got to take its place in the world ostomy community the day after becoming an independent body.

There were thirty-five countries represented at the Congress, ranging from Australia to Norway, China to Israel, Brazil to Slovakia. French and Spanish translation was provided live during the entire event.

Hearing about ostomates' struggles and triumphs from around the world was a moving experience. The fact that every association, including the I.O.A., is volunteer-based, and that the entire conference was put on with no paid staff was an extraordinary revelation.

The foundation of all ostomy associations is "people caring about people". We are not members for the fame or fortune. We join initially, because we need support. Later we want to help others weather the same storm we did, to help them come sailing through the other side of it, into a second chance at life - hopefully with recognition of what a wonderful gift our ostomy has given us.

This magic is happening all around the world. I felt very grateful to be part of this global community for a few days at the Congress.

As I write this it is a glorious late August day, beautiful blue sky overhead, very light winds, temperature in the mid twenties. I must agree with a friend's comment from the other day, "I hope the weather stays like this for the next six months and then warms up a bit." However, we all know that this is not the case. I do hope all of you had a most enjoyable and refreshing summer.

When you receive this newsletter we will be well into September and another season of activities for the Winnipeg Ostomy Association.

United Ostomy Association of Canada Inc. An Independent Organization.

How did it happen?

1. Last year Canadian Chapters were asked to poll their membership on whether to direct membership dues to United Ostomy Association of Canada.
0. In March, you, the members of the Winnipeg Ostomy Association voted 98% in favor of directing membership dues to UOA Canada. They were informed of this before the end of March.
1. On June 15^th, 1997, at the Annual General Meeting of UOA Canada, delegates representing the Canadian chapters voted 95% in favor of forming an independent organization.
2. On June 16^th, 1997, Maria Seigl, President of the United Ostomy Association of Canada informed the 9^th Triennial Congress of the International Ostomy Association of this decision. As of June 15, 1997, U.O.A. Canada became an independent organization.

In July all chapters across Canada were asked to officially affiliate with U.O.A. Canada. On the strength of the March vote, the executive of the W.O.A. has officially requested affiliation with U.O.A. Canada by filing an application form. At the same time, a letter of disaffiliation was sent from W.O.A. to U.O.A. Inc. in the U.S.A.. W.O.A. executive also decided to direct membership dues to U.O.A. Canada beginning with "D" quarter, 1997, the July to September quarter. By the end of "C" quarter, April to June, 1998, all W.O.A. membership dues will be directed to U.O.A. Canada.

Last winter the executive was working on revising the WOA constitution, but when it became apparent that change was in the making all was put on hold. That delay was fortunate as we have now received a set of by-laws, which we will have to incorporate onto our constitution in order to bring us in line with the U.O.A. Canada constitution.

The World Congress was a once in a lifetime event, challenging, enlightening, informative, and for some, one heck of a lot of fun! Over the next number of issues I will write more about the times we had in Calgary.

But, enough for now. See you all September 17^th!

Dave Page, President.

By Dr. D.M. Carr, M.D., FRCP (C); Clinical Associate Professor of Medicine, Division of Gastroenterology, University of British Columbia; Active staff, Division of Gastroenterology, Vancouver Hospital.

Individuals who develop ulcerative colitis soon become aware that they have an increased risk of cancer of the bowel which may cause them unnecessary fear of developing cancer or the need to have the colon removed to prevent it.

Earlier reports suggested a relatively high incidence of cancer of the colon in patients with ulcerative colitis especially when the whole colon is involved and with increasing risk with duration of the disease. It was also thought that when colitis developed in childhood there was an increased risk of malignancy. In fact, it was felt by some that the risk of cancer was high enough to warrant "prophylactic" proctocolectomy in those at increased risk. Fortunately, more recent studies have not confirmed such a high incidence. However, they established an increased risk associated with the extent of the involvement of the colon and the length of time of having colitis. The risk of malignancy associated with onset of ulcerative colitis in childhood is due to the much longer duration of the disease.

With colitis involving most or all of the colon (universal or pancolitis), the statistical increased risk of cancer of the colon begins 10 years after onset, at which time it is estimated that there is about a 1% risk of cancer compared to a normal population. If the disease is left-sided the risk does not increase for another 10 years (1% risk at 20 years from onset). Persons with distal ulcerative colitis (proctosigmoiditis) are at little risk, probably not any greater than the general population.

The cumulative annual incidence of cancer of the colon means that there is a sharp increase in risk after 20 years of having universal ulcerative colitis and after 30 years of left sided disease. Since the majority of patients with ulcerative colitis have distal or left-sided disease the relative risk is quite small.

It is now recognized that Crohn's disease, in particular Crohn's colitis, has an increased incidence of cancer. The risk, however, is much less than that associated with ulcerative colitis. Because the risk is substantially less, it has not been recommended that these patients undergo surveillance investigation for cancer on a regular basis as is done for ulcerative colitis.

In people with ulcerative colitis it is important that colonoscopes be performed at some stage to confirm the diagnosis, determine the extent of involvement and plan management. Patients with universal colitis should begin surveillance colonoscopy at about 8 years from onset with the examinations done on a one to two yearly basis becoming more frequent with longer duration of disease. Those with left-sided disease normally start surveillance at fifteen years from onset, with examinations every 2-3 years. During a surveillance examination serial biopsies are taken throughout the colon. If there are any flat, raised "mass" lesions or other suspicious areas, they are extensively biopsied. If there is "flat mucosa" present, biopsies are taken at 10 cm intervals. A pathologist interpreting the biopsies should be knowledgeable in assessing "dysplasia".

Dysplasia, when present, is "low grade" or "high grade", depending upon the size and appearance of the nuclei in mucosal cells. This is equivalent to a "pap test". If low-grade dysplasia is present, more frequent follow-up examinations are done. If the changes are high grade, and especially if associated with raised lesions, there is a high probability of having or developing cancer with a need for operative removal of the entire colon and rectal mucosa. Active inflammation may cause dysplastic change within the cells and it may be necessary to aggressively treat the colitis with repeat colonoscopy and biopsies once in remission. Pseudopolyps are the consequence of active inflammation and do not become malignant. Those at risk must be followed appropriately because the risk of cancer is still present even when the colitis has been in long remission. In fact, about 50% of patients presently with cancer of the colon do so having had no symptoms of their colitis for many years.

Some patients are concerned because of the theoretical risk of malignancy from immunosuppressive drugs such as Azathioprine (Imuran) or 6-Mercaptopurine (6-MP). These drugs in lower doses act synergistically to reduce the need for corticosteroid drugs such as Prednisone, and thus reduce the side effects. In some patients with Crohn's disease, the immunosuppressive drugs have been used in higher doses as primary therapy. Since the use of immunosuppressive drugs tends to be long term, there may be suppression of the normal immune mechanisms in the body which help prevent development of cancer, especially lymphomas. Fortunately, there has been no evidence of any significant increased risk of malignancy related to immunosuppressive drugs, particularly when used in lower doses for "steroid sparing".

As with any concern, the best protection is prevention and this requires a common sense surveillance program in those persons with inflammatory bowel disease at increased risk of developing cancer.

Above article from Northwestern Society of Intestinal
Research, Issue No. 94 March/April '96

by Beth Wagner, Editor, Cincinnati (OH) Newsletter

Recently a co-worker (who is aware I'm an ostomate) and I were at a casual work function. During some down time, we started talking about how, if we could, we would sculpt our bodies. It was fun talk, nothing serious. Just a couple of women lamenting about our aging bodies.

She wanted to trim her thighs and hips. Not too much, just enough to give her body a different shape.

I, in response, said I would like to shave some baggage off my hips and flatten my stomach. As I patted my abdomen, I realized my pouch was rather full. I looked up at her and shrugged and said, "Of course, some of this is equipment."

"That's right," she said. "You're bionic."

Bionic. Never thought of it that way before.

The "six-million dollar man," that fictitious character Lee Majors brought to our TV screen once a week, had his damaged and/or malfunctioning limbs and other body parts replaced with advanced robotics. It allowed him to continue as a vital part of (if my memory serves me correctly) the government, albeit with extraordinary power and ability.

His counterpart, the bionic woman, was equally impressive in her crime-fighting series.

But think about it. Haven't our respective surgeries given us similar, although maybe less dramatic, opportunities?

In my case, my surgery has allowed me to be much more of an active, confident person than I was during the 21 years I had ulcerative colitis. No more worrying about attending my daughter's concert and jumping up in the middle to race to the bathroom. No more several-week stretches of sick time at work. No more worrying about whether I will be well enough to go on our next vacation.

We may not be thwarting the efforts of Colombian drug lords or recovering stolen priceless museum pieces or keeping our country's arch enemy at bay.

But we're taking our kids (or grandkids) to their soccer games and watching them score their first goals. We're keeping up with the laundry and making - no, beating - the deadlines for our latest work projects. We're donning rain ponchos and riding out into Niagara Falls with our families. We're helping our daughters understand their bodies' changes in their transition into womanhood. We're teaching our sons how to drive stick shifts. We're helping our spouses through trying times at work. We're sitting on our porches and watching the sun set.

And isn't being there for our families as important, if not more so, than recovering the Hope diamond?

We're bionic.

And we're making a difference in other people's lives because of it.

From Stillwater-Ponca City (OK) Ostomy Outlook Online, August 1997: Via South Brevard (FL) OSTOMY NEWSLETTER

As a person with an ostomy or alternate procedure do you know that there is a "Bill of Rights"?

 

The Person with an Ostomy shall:

1. be given pre-op counselling
2. have an appropriately positioned stoma site
3. have a well constructed stoma
4. have skilled post-operative nursing care
5. have emotional support
6. have individual instruction
7. be informed on the availability of supplies
8. be provided with information on community resources
9. have post-hospital follow up and life long supervision and
10. benefit from team efforts of health care professionals.

Do all of you out there know what an Enterostomal Therapist is or does?

Enterostomal Therapy (ET) Nursing is a specialty area of nursing that provides acute and rehabilitative care for people with select disorders of the gastrointestinal and genitourinary systems. The Enterostomal Therapy Nurse plays a "pivotal role" in the provision of optimum patient care. Functions of the role can include consultation, direct patient care, education, research and administration and can encompass such activities as:

1. recognizing and describing indications for ostomy surgery.
2. counselling and teaching patients and their significant others pre-operative, postoperative and rehabilitative phases of ostomy surgery.
3. Stoma site selection and marking.
4. Diagnosing stomal complications and prescribing appropriate nursing interventions.

With what is happening currently with the health care system in Ontario (once sought after by authorities throughout the world) seems to be disintegrating before our eyes. A number of ETs in Ontario have lost their hospital positions over the past few years. This puts greater demand on the ETs in the community who are already stretched beyond their capacity. One of the ways which you may be able to help not only yourself but future persons facing ostomy surgery, is to write a letter to the President or Chief Executive Officer of the hospital to which you are attached, either where you had your surgery or where you are currently living, and ask the powers that be about the ET services in the hospital, such questions as:

• If I am admitted to the hospital for an ostomy or other problem, am I going to be cared for or helped by a qualified enterostomal therapist if I am not in a position to look after my ostomy myself?
• How do I get follow-up help with my ostomy as an outpatient when problems arise or for routine checkups?
• Are new people facing ostomy surgery receiving the counselling and skilled post-operative care necessary to be rehabilitated back into society?
• Who is going to advise me as to the availability of supplies and community resources?

I am certain you can think of many other questions which you could ask. I would suggest that you telephone the hospital and get the name of the top person and address your letter as "private and confidential". It would also be of benefit to send along a copy of the "Bill of Rights for a Person With an Ostomy". Ask for details of what ET services are available and when they are available. Point out that if surgeons are qualified to do ostomy surgery then it is the responsibility of the hospital to provide the additional skilled postoperative care for those people with an ostomy. There should therefore be a full time ET on the staff and not a nurse who looks after the ostomy patients. If we are going to make any changes we are all going to have to take the matter seriously and sit down and write your own individual letter for your own special needs. When you receive a reply, (and insist on getting one) please forward a copy of the letter to the United Ostomy Association of Canada Inc. Office for their records.

Source: Dianne Garde, E.T.

Halton-Peel: via Metro Halifax News, February 1997.

Editor's note: This article is specifically about Ontario, but the Bill of Rights is applicable world-wide and the erosion of health care is happening right across Canada.

Sometimes, just a small hint can mean so much to an ostomate who is having problems with appliances. A friend of mine who has a temporary ostomy was having trouble with leakage and short appliance-wear time. I asked her if she was "kneading" (pressing or massaging) the area nearest the stoma when the new wafer was applied. She wasn't doing this, and after this small hint, she has increased her wear time and eliminated some of her "accidents." I wear a two-piece system and have found that pressing inside the flange and near the stoma with one or two fingers will really help get a good seal and prevent seepage underneath the wafer. Other hints than can help in wear time are:

• Using micropore tape to picture-frame the wafer or skin barrier will increase wear time, especially if you are like some of us who have a little extra weight, and the body conformation is such that even a flexible wafer tends to come loose. I use tape near the flange and also overlap the edge of the flexible portion of the wafer. Otherwise, I have problems.
• To prevent skin troubles, you might try putting three or more applications of skin prep prior to applying the wafer. This helps prevent skin irritation in case of erosion of the wafer, allowing some effluent to contact the skin. It's easier to prevent skin problems than to solve them.
• Be certain that the skin is dry prior to putting the paste around the stoma. The stoma is moist and liquid may exude down the skin below, preventing a good seal of the wafer or disc.
• Unless you are using a Durahesive (or comparable) product, you should have an opening in the wafer slightly larger (1/8") than your stoma. If too tight, the stoma might be damaged or the disc or wafer may be pushed up when peristalsis occurs, allowing seepage.
• If you begin to itch under your wafer, disc, or skin barrier, or if you detect an odor, you should check for leakage as soon as possible. All these signs usually indicate a problem and to prevent skin damage, change should be made soon.
• Odor should not be a problem unless the tip of the pouch is not cleaned properly after emptying, or there is an "accident". I have found than an internal deodorant can really help in bathroom odors also.

Batesville (AR) Newsletter, via S. Brevard (FL) OSTOMY NEWSLETTER 2/96

by Dr. Lindsay Bard

1. It is important that you as an ostomate know you should be handled differently as a hospitalized patient than a non-ostomate.

2. Communicate to medical personnel who take care of you that you have an ostomy and what type. This includes all physicians that treat you.

3. If you feel something is being done or going to be done to you that might be harmful, refuse the procedure. Then explain why to the personnel involved, especially your physician.

4. Bring your own supplies to the hospital. Never assume the hospital will have the exact pouches or irrigation systems you use.

5. Never accept an irrigation if you have an ileostomy or a urinary diversion of any type. Medical personnel often assume all stomas are colostomies.

a) A transverse colostomy cannot be managed by daily irrigations. The only type of colostomy that can be managed by irrigations is the descending or sigmoid colostomy. But, sigmoid or low colostomies do not have to be irrigated in order for them to function. Many sigmoid colostomates prefer letting their colostomy work as nature dictates. If you do not irrigate your colostomy, let the fact be known to those taking care of you. If your physician orders your bowel cleared, you irrigate your own colostomy; do not rely on others to know what to do. There is a strong possibility personnel caring for you will not know how to perform an irrigation.

b) Bring your own irrigation set to the hospital.

c) If you have an ileostomy or urinary diversion ostomy, never allow a stomal irrigation as a surgical or x-ray preparation.

d) Remember that laxatives or cathartics by mouth can be very troublesome for colostomates.

e) Laxatives or cathartics by mouth for the ileostomate are dangerous and can be disastrous; always refuse them. The ileostomate will have diarrhea, may become dehydrated and go into electrolyte imbalance. The only prep needed for an ileostomate is to stop eating and drinking by midnight the night before surgery. An IV should be started the night before surgery to prevent dehydration.

6. X-ray studies can present very special problems for ostomates.

a) Never allow radiology technicians to introduce barium into your stoma with a rectal tube. It is too large and rigid. Take your irrigation set with you to x-ray and explain to the technicians that a soft rubber or plastic catheter F#26 or 28 should be used to enter the stoma. Put a transparent bag on before going to x-ray. Have the technician or yourself place the rubber or plastic catheter into your stoma through the clear plastic bag. When enough barium is in your large bowel for the x-ray, the rubber or plastic catheter can be withdrawn and the open end of the bag closed. The bag will then collect the barium as it is expelled and can be emptied neatly after the procedure. Once the x-rays are completed, do your normal irrigation to clean the remaining barium from your colon. This will prevent having to take laxatives by mouth after the procedure.

b) An ileostomate may drink barium for an x-ray procedure, but never allow anyone to put barium in your ostomy.

c) A urostomy patient can have normal GI x-rays without any problems. Never allow anyone to put barium in your stoma. At times, dye may be injected through a soft, plastic catheter into a urostomy for retrograde ureter and renal studies, often called an ileo-loop study. The same study may be performed on a urostomy patient with a Koch pouch. The dye will be injected via a large syringe; this can be a very painful procedure if the dye is not injected very slowly. Even 50cc injected rapidly will create a great deal of pressure in the ureters and kidneys. Remember to request that the injection be done slowly.

From the Ostomy Association of Oakland County, MI

by Alice Bowman and Bob Baumel, June 1997, Stillwater-Ponca City (OK) Ostomy Outlook

One of us recently visited a patient with a two-year-old colostomy. The patient was suffering from severe skin irritation caused by using appliances with pre-cut stoma openings of the same size as originally measured in the hospital.

Immediately after surgery, the stoma is quite swollen; it then shrinks for about the next six months - sometimes for a year or longer. During this initial period, it is best to use a cut-to-fit appliance and measure your stoma every time you change the barrier. Once your stoma size has stabilized, you may switch to a pre-cut appliance if you wish; however, you should continue to measure your stoma occasionally, to see if you should switch to a different size appliance.

If you fail to adjust your appliance size as your stoma shrinks, you'll eventually be using an appliance with an opening much bigger than your stoma. This leaves a large area of unprotected skin around your stoma, making you a prime candidate for skin irritation.

If you've had an ostomy for many years, perhaps you've forgotten that initial period while your stoma was shrinking. However, if you find yourself visiting a new ostomate, this is a topic you may wish to discuss if you have the chance.

How big is the optimal appliance opening? For most types of barriers/faceplates, the opening should provide clearance of a millimeter or two all around the stoma. On the one hand, you should minimize the area of unprotected skin around the stoma; on the other hand, some clearance is usually necessary because many barriers contain hard materials (including plastic films) that can damage the stoma if they come in direct contact. Please note, however, that some of the newer barrier materials, such as Hollister's Flextend® and ConvaTec Durahesive®, are more protective and contain no hard materials, so they don't require any clearance.

From Stillwater-Ponca City (OK) Ostomy Outlook Online, June, 1997