The Newsletter of The Winnipeg Ostomy Association

March/ April 1998


W.O.A. TO DISSOLVE IN SEPTEMBER?

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
.

W.O.A. TO DISSOLVE IN SEPTEMBER?

A WOA Executive meeting took place on May 7th. Present were Dave Page, Betty Friesen, Anne Lecot, Mary Beth and Stan Sparkes, Harry Tucker, Mike Leverick, Carol and Bill Aitken.

We were back to our usual spring crisis. Two years ago, lacking a President after the April elections, Dave Page came forward to save the day at the May meeting. Last year, we were left needing a Secretary after the election and Betty Friesen had let it be known that, for health reasons, she would prefer not to continue as Treasurer. Betty graciously stayed on another year and Bill Aitken, who lives in Gimli, saved the day by taking on the Secretary's role. We had a great winter and the expected travel problems for Bill did not occur, but next year?

Last month at the Annual General Meeting, two executive positions were left unfilled: Treasurer and 2nd Vice-President. Anne Lecot, who has served before in this position, took on the Visiting Chairperson role. She also serves as the Refreshment Committee and the Cards Committee. Anne has worked hard for the association for many years and takes these roles on because of her commitment to the WOA. Should she have to carry such a heavy load, year after year?

Elenore Schmidt is having health problems and stepped down as 1st Vice-President as a result. She is still the Reception/Hospitality Committee, the Public Relations Committee and on the Social Committee.

I am remaining as newsletter Editor, taking over the mailing from Elenore and on the Social Committee with Elenore. I also handle the web pages and email and attend executive meetings. However,I was recently elected President of the Dr. Penner School Parent Advisory Council and will be very busy with this role for the next two years. All the people present at the May 7th executive meeting have and will work very hard for the WOA, but . . .

WE NEED SOME HELP.

Unless we get some members willing to actively take part in the WOA, out future is looking very dim!

Drastic changes will be made in September unless people come forward.

The WOA might:

This is your choice! Contact a member of the executive now! How can we let the WOA, with almost 300 members, flounder like this!


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From the President's Desk

A BIG THANK YOU

AS ANOTHER YEAR OF ACTIVITIES WINDS DOWN IT IS TIME FOR ALL OF US to step back and say thank you to three people who have served the Winnipeg Ostomy Association with the utmost distinction for a good number of years. Elenore Schmidt, first as Secretary, more recently as 1st Vice-President, Betty Friesen, Treasurer, and Christel Spletzer, Visiting Coordinator will be leaving these positions at the end of August. This association is fortunate indeed to have had their leadership in these most important roles.

On a more personal note, I have greatly valued their guidance and wise counsel these past two years. I shall miss them as members of the executive committee. I do, however, look forward to their continuing involvement as members of the WOA.

Elsewhere on these pages you will see that we are now in a crisis situation, as we need to fill two executive committee positions. If you can, please do volunteer.

It is a gorgeous, sunny May afternoon, the dog wants to head out to chase some squirrels, his great passion in life.

So that's it for now. Have a good summer.

Dave Page
President


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Letter To All Visitors Of The Winnipeg Ostomy Association

The establishment of United Ostomy Association Canada Inc in 1997 introduced some changes to our VISITING PROGRAM GUIDELINES. Most visitors are familiar with the basic guidelines, so let this be a refresher list for you to check your performance. This will also help to maintain a professional image.

These are some of the policies that are easy to forget, yet are very important in the Visiting Objectives. If you would like to have detailed information about the visiting program, I would be happy to send you the complete guidelines. Those that have taken the training seminar since 1997, already have the guidelines.

Thank you for your willingness to be a VISITOR.

Christel Spletzer.
Visiting Program Co-ordinator


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Election Results

President: Dave Page
1st Vice President: Harry Tucker
2nd Vice President: VACANT
Secretary: Bill Aitken
Treasurer: VACANT
Visiting Chair: Anne Lecot
Past President: Stan Sparkes.


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Prostrate Cancer Part II

(Continued from Jan/Feb 1998 issue
Prostrate Cancer Part 1)
Excerpted by Bob White from a presentation by Stuart N. Liberman, M.D.

Assessing Cancers. In talking of cancers of any kind - breast, colon, prostate - there are two important tenets we were taught. They are grade of cancer and stage of cancer. Grade is what the pathologist sees under the microscope. He is looking at cells, at their structure, their architecture, how one cell differs from another. This gives us a lot of important information about the aggressiveness, the personality, of the cancer. Same cancers have a mild personality - they don't spread very much - others are mean and aggressive, dividing actively and spreading. In dealing with the prostate, we use something called the Gleason system, which allows urologists, oncologists, pathologists, and internists to communicate more easily with one another. There is a definite correlation between the grade - what the cancer looks like under the microscope - and the progression of the cancer. The higher the number, the more aggressive and more malignant the cancer. The lower the number, the less likely it is that the cancer will divide, spread, and escape from the prostate. If the pathologist reports the cancer to be from grade 2 to grade 4, we regard it as having a low aggression level, with a relatively small chance of dividing and spreading. The other extreme - from grade 7 to grade 10 - indicates a highly aggressive and malignant growth, with the ability to spread within and outside the prostate. Grades 5 and 6 are termed "moderately differentiated", i.e., they have a moderate degree of aggression. We need to know the grade of the tumor to help to determine what options are available to the patient.

Another means of labeling the degree of seriousness of a cancer is called "staging". Stage essentially identifies the location of the cancer. Has it spread out of the tissue in which it originated? Or is it localize to that area - in the prostate, for instance? Cancer that we feel is localized has a very good chance of being cured. The way we treat such a patient is very different from the methods we use with a patient whom we think has a cancer that has spread. The two major tests we use are the CT scan and the bone scan. The CT scan looks at lymph nodes; in prostate cases we are concerned with those in the pelvic area. When cancer escapes from the prostate, one of the places it likes to go is the lymph nodes. The other area in which prostate cancer cells like to gather is the bony structure of the body. We use the bone scan to discover increased activity in the bones, suggesting the presence of cancer. Elderly people, who are subject to arthritis, bone deterioration, fractures or breaks of the bone can present difficulty in reading. An old rib fracture, for instance, that didn't heal well, may look like metastatic cancer. Although these are currently the best tests available to look for cancer that has spread, they are unfortunately not perfect.

We use these tests in combination with PSA readings. Unfortunately this reduces to a sort of "numbers game"; all we, as physicians, can do is present the statistics to the patient. Certain things are out of our hands. These tests are not perfect, but they remain the most effective tools available now - when we combine the PSA readings with the CT and bone scans, and the Gleason score, we are giving the patient the best statistical information. This is what is important in deciding how to treat a prostate cancer.

Staging essentially is a means of determining how far a cancer has progressed. It consists of a combination of alphabetical and numerical designations (A1 to A4, T1 to T4, etc.). The greater the numerical designator the more serious the progression; the higher the alphabetical indicator, the greater the seriousness of the cancer. It's another tool we use in assessing the outlook and the most appropriate means of treating the cancer.

Years ago, most patients presented with large, bulky tumors, for which surgery was not an option, and in whom the cancer had already spread outside the prostate. Today, by far the greater part of patients presenting to urologists has a "localized disease", meaning the cancer is located in the prostate. Why the change? First, PSA enables us to find cancer at an earlier stage; rectal examinations now are, or should be, a routine part of any examination by your primary physician. With these basic procedures now common, for the majority of Caucasians at age 50, we will not miss many cases of metastatic cancer. So, today, about 80% to 85% of all prostate cancers are found in the localized stage.

Treatment.

As to treatment, there are several possibilities open in treating diagnosed prostate cancer. The three most frequently used are:

1. Observation.
We make routine (at 4- to 6-month intervals) PSA and rectal examinations. We're looking for upward trends in the PSA or a physical change in the prostate. If the trend is upward, suggestive of active cancer, we might begin treatment. This procedure is used primarily for patients with multiple medical problems; those who are not candidates for surgery or for radiation; and, in general, anyone who has a life expectancy of less than 10 years.

2. Radiation therapy.

This currently comes in two forms, external beam therapy and seed implants.

a) As recently as 20 years ago, patients undergoing external beam therapy for prostate cancer (1) had horrible side effects and (2) died of prostate cancer anyway. The procedure, fortunately, has improved tremendously. In fact, the results of radiation therapy are very close to what we call the "gold standard", which is radical prostatectomy. It's very well tolerated, and it's very precise - the radiation is directed right at the prostate, with minimal side effects. Some of these are localized and temporary cystitis, usually showing as frequency of urination; proctitis - inflammation of the rectum, leading to frequent bowel movements; and, unfortunately, a high (about 40%) incidence of impotence. The primary disadvantage of this procedure is that the prostate is left in place, and if even a tiny amount of cancer remains, there may be a recurrence.

b) Seed implantation, which is essentially the placing of a radioactive seed in the prostate. It is a surgical procedure, albeit a relatively easy one, often done as outpatient treatment. It does give a higher dose of radiation than beam therapy, and it is directly to the prostate. In recent years, it has become a common practice to combine both of these procedures.

3. Radical Prostatectomy.
This is considered the "gold standard", against which all other treatments must be compared. Harsh as it sounds, it is the very best chance of curing a young, healthy man, diagnosed with prostate cancer. It involves, as the name implies, radical surgery, and it has associated with it not only the risks accompanying all such surgery, but risks particularly associated with this specific procedure. Probably the most widely known is penile dysfunction - inability to obtain an erection. This is dependent upon several factors including the patient's age, his prior ability to perform sexually, as well as other medical problems that might be involved in his general ability to have an erection. The other main concern is urinary incontinence. Some 10 to 15 years ago a large proportion of patients were incontinent after this surgery. We have since refined our knowledge of the anatomy that keeps a man continent. If the operation is done correctly, the risk of having free-flowing urine should only be about 2% to 3%. This is compared with an occasional dribble, often caused by coughing or sneezing, which can be handled easily by a small pad. Many, many men are not even subject to this experience after surgery. But the risk is there and must be understood by the patient prior to the procedure. We have also learned how to perform the surgery with little blood loss.

There are other treatments for prostate cancer now under study. One often heard of is cryotherapy, in which a probe is put into the prostate, freezing it, as a way of killing the cancer cells. The main problem here is that it has been used for only about five years, and is still considered experimental. With any cancer treatment, we're aiming at a procedure that's not limited to one or two years free of cancer - we aim at a treatment good for at least 10 to 20 years. The short-term data accumulated so far with cryotherapy are encouraging; the procedure seems to be killing most of the prostate cancer. But, with radical prostatectomy, we have data with a 20- to 30-year base, and we know that these patients are still alive without cancer. The main advantage of cryotherapy is that it is an outpatient procedure - it's quick, it's easy, it doesn't involve major surgery, and subsequent radiation isn't needed. But it is experimental.

Progress has been made in recent years in tracking the nerves adjacent to the prostate, to permit their being saved during prostatectomies. Unfortunately, these nerves (which enable men to have erections) are in large measure run right along the side of the prostate. Sparing them risks the possibility of missing a small part of the cancer the removal of which is the sole purpose of the prostatectomy.

Medicare Difficulties. Medicare will no longer accept charges for general screening of the blood, which formerly included routine tests for PSA. It is possible that this stand may be changed in coming years, but it should be remembered that, if a patient shows symptoms of a problem with which a PSA may be helpful, the physician may order it. To sum up, localized prostate cancer can be cured by one or more of several methods. But metastatic cancer cannot be dealt with. We can only palliate the patient - try to make him comfortable, try to keep the cancer suppressed, but there is absolutely no cure at this time.

via S. Brevard (FL) OSTOMY NEWSLETTER

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The Ileoanal-Pouch Alternative: The Jury Is In!

By Ron Titlebaum and sanitized by Diane Bryant, RNET, Boston Medical Center

Two years ago, on these same pages, I wrote a wickedly humorous article comparing life with a J-pouch to life with an ileostomy. Having had two of each, I qualify as one of the world's foremost experts - the only layman so endowed. An "expert," if you don't know, is somebody who knows more and more about less and less until they know everything about nothing!

Two years and what now seems like 200 support group meetings later, I think it can now be concluded that surgical momentum has unequivocally shifted and although an ileostomy is still considered by many as the procedural "Gold Standard" for curing ulcerative colitis or familial polyposis, the ileoanal pouch is rapidly-becoming the operation of choice. For those who qualify, it's now only a matter of time before it takes over.

Right now, if you live in or near Boston like I do, the odds are much higher that you will have a J-pouch rather than an ileostomy, assuming you qualify. Almost every major medical center in Boston with a colorectal surgery department is now doing the procedure in large numbers. If you live in Los Angeles it's close to the same situation. However, according to an ET friend, if you live in the Dallas - Ft. Worth area, the odds are you'll still get a recommendation for an ileostomy. If you live well outside an urban center the preference is typically still for an ileostomy. Wherever there exists adequate knowledge and experience, the ileoanal pouch is now starting to win the battle of numbers.

Unfortunately, nobody is keeping statistics but this expert reckons that we have easily now passed the 10,000 operation level for the ileoanal pouch in the US alone. Both the Mayo and the Cleveland Clinics passed the 1000 procedure levels a while ago. A significant number, probably over 30, have done between 100 and 500 and perhaps close to 10 have done between 500 and 1000. This compares to probably over 150,000 ileostomies, maybe closer to 200,000 now in existence in the US. But as I've said the momentum is shifting.

For those not familiar with the procedure, with an ileoanal pouch, the colon is removed, the mucosal lining of the rectum down to the anus is stripped and an internal reservoir or pouch is made from the last 8 inches or so of the small intestine (the ileum). This is then pulled down and attached (an "anastomosis") to the inside of the anus. The pouch functions like a new rectum and minicolon, both storing stool and absorbing some of the water. Since the anus and sphincter muscles are in place and functioning well (they have to be for you to qualify for the procedure), you go to the bathroom in the normal way - but more times.

The procedure has many names and nicknames. How's this? The ileoanal reservoir, ileoanal anastomosis, pullthrough, endorectal pullthrough, or the J, S, W, H or other letter pouch. The letter typically stands for the shape of the pouch. The J-pouch is the most common. For my first procedure, I had an X pouch where they attached one end of the pouch to my optic nerve so I could see where I was going (just kidding).

The statistical results of the J-pouch (I'll call it that for the rest of the article) are now very well established. By the way, if anybody wants to do their own research on the Internet, go to the National Library of Medicine site, (www.nih.nlm.gov) and click on Medline, then Pubmed and then enter ileoanal reservoir as the search word. Then click on Related Articles after any or all of the listed articles. Doing this, you'll find over 300 articles on this subject.

There's no databank yet connecting all the studies and publications, but its now pretty clear the results are essentially as follows:

Functional Results.

Patient Satisfaction: Over 90% in every study done.
Bowel Movement Frequency (the J-pouchers obsession): 5 - 6 times during the day and 1 - 2 during the night. The best results are 2 - 3 times a day and 0.5 times a night. Will somebody please explain to me how you go a half a time. Some people, like me, go 8 - 12 times a day. I know I could do better, but this is the price I pay for my dietary debauchery.
Ability to wait an hour for a BM: Over 90% after a year and typically over 75% in just a few weeks after the procedure. Since the stools are looser, the longer one waits, the more it starts to feel like diarrhea. By the way, after about a year, the typical J-pouch holds about 1/2 the capacity of the typical rectum.
Leakage and Pad Usage: About 15 - 20% of people have some form of leakage through the anus. It's usually very mild and more common at night during sleep or during vigorous exercising. When it occurs it can often be minimized by sphincter muscle exercises (kegals) and with some diet management. But because it does happen with some people, these folks often use pads for external absorbency, most typically panty liners.
Leakage and Perianal Itching or Burning: When leakage occurs or if you don't clean yourself well after a BM, the highly alkaline stools can burn or itch the area immediately around the anus. This grown up version of diaper rash is usually readily resolved with applications of the same ointments; like Desitin, A R D and Eucerin. (Around the gym, I'm told jocks call this same phenomenon "ring-sting!")
Ability to discriminate between gas and stools: Over 80% of people after a year seem to have little trouble with this. In my case, passing gas is simply too risky.
Use motility control medications and/or stool conditioners: Somewhere between 20 - 30% of J-pouchers use motility inhibitors, most commonly generic Lomotil or Imodium. People tend to use less as time goes on. A comparable number use psyllium type stool conditioners like Metamusil, Fibercon or Citrocel. Some people use both. Some people swear by them and some say the benefits are marginal.
Dietary Limitations: The procedure per se introduces essentially no dietary limitations. On the other hand without a rectum and colon, people need to learn which, if any foods, can cause problems. Every individual seems to react differently. But, if something used to cause you gas or loose stools before, in all likelihood they'll be more problematic after this surgery. Mild lactose intolerance may seem more severe. If hot peppers burnt on the way out before, you'll need a fire extinguisher now. Beer should be avoided at least until they take you off IV feed. Be reminded that abdominal surgery itself causes internal adhesions to form, and this in turn increases the potential for small bowel obstructions. Until you have some dietary experience, it's best to start with a low residue diet and build up your repertoire.

The Most Common Complications:

Pouchitis: About 20% of J-pouchers get pouchitis during the first year following surgery. By the end of 5 years just under half the people have had one bout with it. For well over 80% of these people, antibiotics, most commonly Flagyl and/or Cipro, resolve the problem quickly and it never comes back. Some people have ongoing reoccurrences. Pouchitis is an inflammation of the pouch which mimics the symptoms of a relatively mild bout of colitis: gas, cramps, diarrhea and possibly, mucosal bleeding. Some people ask how you know if you've got it. You'll know!
Small Bowel Obstruction (blockage or partial blockage): Some people are prone towards the formation of adhesions which can cause a loop of bowel to be narrowed. Should one of these coincide with some undigested solid food or waste product, the results can be a blockage of the bowel passage. In most cases, but not always, these resolve without hospitalization. About 20% of people with a J-pouch have one or more obstructions.
Other Complications: In under 5% of the cases other complications occur, such as internal pouch leakage, fistulas, abdominal hernias, pelvic infections or separations of the anastomosis. In as many as 10% of cases, anastomotic stricturing (narrowing of the anal outlet) can occur. Fortunately (or unfortunately, depending on your viewpoint) this is usually resolved quickly by dilatation via the infamous "digital exam!" This is one of the primary reasons, your colorectal surgeon will want to do a follow-up examination annually, at least in the beginning. For men, temporary or permanent sexual dysfunction is possible, but this now occurs less than 1% of the times. I myself had temporary retrograde ejaculation - the unusual sexual phenomenon of going instead of coming. Death, the ultimate complication, is very rare but can and has occurred - as it can and has with any major surgical procedure.
Pouch Failure: It happened to me so I know it can happen. Most pouches, if need be, can be reconstructed. But in about 3% of cases, the pouch must be removed and the patient left with a permanent ileostomy. Results are improving quickly but it's not foolproof.

If you suffer from colitis or familial polyposis, and if you have your anus, if your anal sphincter muscles are strong and healthy and you are under 65 years old, you may qualify for the ileoanal pouch procedure. Wherever you live, try to explore this alternative. But please find somebody who specializes in it. It's a long, difficult procedure, much more so than a conventional ileostomy.

Via OAB Bulletin (Boston) Nov/Dec 1997.

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Visitor's Report

By Christel Spletzer

Patients with the following ostomies were visited in March and April:
Colostomy - 11
Ileal Conduit - 1
Ileostomy - 8
Pelvic Pouch - 0
Continent Urostomy - 1
Total = 21


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1997 Annual Visitor's Report

By Christel Spletzer

The Visiting Program of the Winnipeg Ostomy Association provides valuable support to patients that are faced with adjustments after surgery. The many responses I receive from patients attest to the quality of visiting and the compassion you give to patients. In 1997 , a total of 106 visits were made.

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

Most visits were made at the Health Science Center and at the St. Boniface General Hospital.

VISITOR TRAINING

The training and retraining of visitors took place on April 26, 1997 and on October 8, 1997 at the St. Boniface Hospital.
The Visiting Program is the most valuable aspect of any Ostomy Association. Keep it alive and vibrant!

Christel B. Spletzer
Visiting Program Co-ordinator


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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