Elsewhere in the newsletter you will find a list of the incoming executive, who take office on September 1, 1999. While a number of us continue on, in September we will be welcoming Helmut Friesen and Rooney Weir as Vice-Presidents. Many of you are aware that Helmut was very active as the one-person nominating committee recently and gained many insights, some good, and some bad, about the WOA. I very much look forward to working with Helmut as he brings those insights to the executive. The wealth of experience that Rooney has, not only in local chapter matters, but as Provincial Rep. for the United Ostomy Association in the early nineties will, I am sure, be of great value to our organization.
It is with pleasure that I welcome both Helmut and Rooney to the Executive Committee.
NATIONAL CONFERENCE
I do hope that we will have good representation at the UOA Canada National Conference
in August. Information, a tentative conference schedule, conference registration and hotel
registration forms can be found in the recent edition of Ostomy Canada magazine, which
members should have received during the past few weeks.
NATIONAL AWARDS
In that edition of Ostomy Canada, the United Ostomy Association of Canada introduced
a national award program. Nominations for two of the awards, the Maple Leaf Award
and the Enterostomal Therapy Recognition Award (ETRA) are being accepted from the
various chapters across Canada.
I take great pleasure in informing you that Mike Leverick, our Newsletter Editor and Webmaster, has accepted our chapter's nomination for the Maple Leaf Award, and that Gay Hordienko, ET, Program Director of the Manitoba Ostomy Program, has accepted our chapter's nomination for the ETRA award.
If I do not see you at the Wine and Cheese on the 19th or at the conference in Edmonton, HAVE A GOOD SUMMER!
Dave Page
President
Most every ostomate will have an experience with leakage at one time or another -
hopefully the situation will be rare and should not occur with frequency. The crux of the
matter is how one handles it. An ostomate should always be prepared. I usually
recommend that one carry simple post-operative appliances that can easily be applied, in
your desk at work, in the car glove compartment, or in your purse or shirt pocket. If you
feel more secure with your permanent equipment, fix a small kit with all the necessities.
If and when disaster strikes, try to be calm (sometimes easier said than done), grab your
emergency kit and head for the nearest bathroom. You may have to do with wet or dry
paper towels, Kleenex or toilet paper -- they all help in an emergency. If leakage occurs
with any frequency, something is wrong. You may need a change in appliances or
manner of application. An increase or decrease in weight since surgery can create folds
and valleys around your stoma, particularly while sitting. This may require a different
convexity or smaller outside diameter on the faceplate. The stoma size may have shrunk.
The faceplate opening should be 1/16 to 1/8" larger than the stoma - no more.
If the appliance is the correct one for you, the problem may be with the application.
There are several products on the market which are good. One may work better for you
than another. One rule of thumb - the skin must be bone dry before you apply anything.
A hair dryer on cool or a hand fan can accomplish this. Skin breakdown and irritation,
particularly if it is wet and moist, can affect wearing time and cause leakage. If the
leakage problem persists despite your attempts to correct it, make an appointment to see
an E.T. Don't be discouraged. Help is always available. Leakage should be a rarity and
not a common occurrence.
This is part 4 of Barbara Skoglund's "Ostomy Myth" series. This series began on the
Internet, in the alt.support.ostomy and alt.support.crohns-colitis newsgroups. Barbara
Skoglund graciously rewrote her newsgroup postings for Inside Out. Thanks again Barb!
Boy was I shocked when she said, "Your nurse Jill asked me to stop by to chat with you." "Huh?!?" I gasped. She said, "Well I was born without a bladder and I've had a urostomy since I was an infant. I'm 23 now. What kinds of questions do you have?" My expectation of an elderly, grandmother ostomate was blown right away. Two of my other visitors were in their 30s and the fourth was in her early 40s. Two of them had had their ostomies for years.
Just as ostomies are needed to deal with a variety of medical problems, ostomates are represented in all age groups. Granted, UOA (United Ostomy Association) studies have shown the average age of ostomates is increasing. Innovations like the j-pouch and better cancer treatments have reduced the number of ostomy surgeries. But there are still many of us, of all ages, who live with ostomies. I was surprised to learn about kids who have ostomies in childhood, but who are able to have reconstructive surgery or for other reasons are able to be reconnected later on. When one of my former coworkers learned I had an ileostomy she said, "One of my sons had an ostomy when he was a little boy." Some people, like my friendly visitor in Fargo, spend their entire lives as an ostomate.
I also didn't know what to call the thing - ostomates use a variety of names - appliance, pouch, bag, prosthesis. Depending on your insurance company it can also be labeled a durable medical product or a convenience item.
Appliances are produced by a variety of manufacturers to meet a variety of needs. Some are one piece - where the bag and the adhesive faceplate/wafer (I think faceplate is a more descriptive term - but most folks call this a wafer) are one in the same. Others are two piece - a faceplate/wafer and bag that connect together with a Tupperware type seal. One piece or two - the opening that the stoma fits through can either be precut or cut to fit. Faceplates typically have built in skin protection called a wafer and are approximately 4"x4". Pouch sizes vary. Some pouches are closed end and others are open ended.
Most of us use open ended pouches that close with a plastic clip. Others prefer to use a rubber band or a twist tie. (I'm a die hard clip woman myself.) Colostomies, ileostomies, and urostomies are all a bit different and there are appliances specifically designed to meet their specific needs. There are also different designs and options to fit the contours of your body - convexity is a word you may hear a lot - in simple terms a convex appliance helps to hold the tummy down and make sure the stoma sticks out so the stool or urine stays as far away from the wafer as possible. And as I mentioned in Myth One - modern appliances are odor proof.
Many folks just peel off the paper backing on the face- plate/wafer and stick it on. However, there are also a variety of other ostomy supplies that some of us use. Many use paste or a seal (looks like a thick O ring) to give us some extra protection around the stoma. Many use a skin barrier to add an extra layer of protection. Some of us wear a belt that goes around the waist and clips to the faceplate/wafer. Some folks "window pane" their appliances - by taping down all four sides with fabric or paper tape. Those of us who use these "extras" do so to extend our wear times or to give some extra protection to our skin. (It's very important to keep the stool or urine off the skin around the stoma.) If you are curious - one of the leading manufacturers has a web site at www.convatec.com with photos of appliances.
There are still some ostomates out there who use older appliance systems that indeed were made of rubber. My ET nurse told me of the patient he met who used bread bags and duct tape! If you run into someone who hasn't modernized encourage them to see an ET nurse. There have been many appliance innovations over the years.
Birthing Babies Out My Anus Many female ostomates give birth after their surgery. Many male ostomates father children after their surgery. Can ostomy surgery cause infertility problems? Yes. So can other abdominal surgeries, so can other issues, so can Crohn's disease.
As I indicated in an early myth posting, some men have impotence problems after surgery. When I say "some" I'm talking about a very small percentage. Studies have shown that the less experienced the surgeon, the more likely the problems. It isn't the ostomy that causes any physical problems, but rather sloppy cutting near the rectum. Patients can reduce the odds of these problems by finding an experienced surgeon. Women may also have problems resulting from surgery. There may be fertility issues caused by adhesions, the internal scars from surgery. If an adhesion appears near the opening of the fallopian tube it could block sperm from finding their way to eggs and/or eggs finding their way into the uterus. There are surgical procedures to help clear away problematic adhesions. In-vitro is also an option.
Infertility rates are higher for women with Crohn's disease than women with ulcerative colitis or healthy women. However, in some cases an ostomy could improve the fertility of a woman with Crohn's disease - especially if she suffers from vaginal fistulas and surgery puts her into remission and clears away the fistula problem.
I want to be a mother and was quite concerned about adhesions since I had 5 abdominal surgeries. I recently asked for feedback from other ostomates. I received many notes from female ostomates who have and who have not been able to have children. Most women reported they had no fertility problems as a result of their ostomy. Of the women who discovered they were infertile, most were infertile for reasons unrelated to their ostomy. I am looking forward to the day when I can bust this myth for myself.
According to the WOCN (ET nurse professional association) web site: "There are an estimated 750,000 persons with ostomies in North America, and more than 70,000 new ostomy surgeries are performed annually in the United States and Canada." Of that number less than 50,000 are members of the UOA (United Ostomy Association - a support group in the US).
Mind you, our numbers in North America are declining because of improved surgical procedures like j-pouches and cancer resections - but there are far more ostomates than most people realize.
According to the IOA, "They don't even count people with stomas in the US, let alone Burma, BUT an estimate developed from among the 70 member countries of the IOA totals about 2.9 million."
You are not alone......
Your ET nurse is your best friend,
Always the teacher, forever the nurse,
She helps you get better, never worse.
If bowel or bladder, her care's the same,
Your stoma's welfare is her aim,
To have it flow when it should flow,
And keep it's healthy rosebud glow.
She gets you right back on your feet,
She goads, cajoles you, always sweet,
While all the while she teaches you
That life's worthwhile to start anew.
"The stoma means a new beginning."
She tells you, "Now's the time for winning,
And rush to join the joyous throng,
That celebrate life's happy song."
"Visit," she says, "Go tell your story."
Please keep it simple and save the glory,
To help the patients gather hope,
And find new ways to help them cope.
But, goes your stoma on the blink,
The nurse is there, quick as a wink,
To poke it, soak it, daub it with goo,
And when she's done your stoma's like new.
To sum it all up, a friend indeed,
A shining light in time of need,
The ET nurse takes care of you,
As only your very own mother would do.
Often blood is noted in the appliance and its origin is not immediately clear. One source may be irritation of the stoma by uric acid crystals formed in the appliance or on the skin around the stoma (when the faceplate is too large). This may be indicated by small white crystals that have an abrasive effect on the stoma. The crystals may be readily dissolved and the bleeding relieved by bathing the stoma and surrounding area with a half-strength vinegar solution 3 to 4 times a day while the appliance is being worn. Usually the best time to change a urinary appliance is in the morning before having anything to drink. Only drainable pouches should be used on urinary stomas, NEVER CLOSED POUCHES. A convex faceplate may be extremely useful with a flush urinary stoma.
Two to three quarts of fluid taken daily provide adequate movement through the urinary system to prevent the increase of bacterial growth that occurs in a "slow-moving" system. Increased bacterial growth may lead to urinary tract infection. Urinary pouches allowed to get to full will leak. Connecting the pouch to a leg bag will be helpful if unable to empty often enough. Attach the strap of a leg bag loosely to allow good blood circulation.
Bedside drainage bag will prevent getting up at all hours of the night to empty the pouch. Your pouch will not hold the amount of urine that may be excreted during the night.
Drinking cranberry juice has been found helpful in deodorizing urine. There are some foods that make odor more noticeable. If there is a persistent, unpleasant odor, this could be a sign of infection and must be treated by a urologist.
The first presentation was by Yvonne LeDoyen. She spoke on Pelvic Pouch Procedures. This topic was followed by Marcie Lyons, whose subject was continent urostomy. A "Basic Visiting Policy" video was then shown, followed by a general discussion.
After coffee, the group volunteered various problems encountered during their visiting ventures. The topics were "Challenging Situations" and "Questions Often Asked".
All in all, it was very stimulating and informative - our two ET's handled all queries aptly and spent a lot of time with each visitor who wanted information. We certainly owe them our appreciation - where would we be without them?
Those who were unable to come for various reasons will, we hope, come out when we have our next re-training seminar. I would like to thank all those who did come - there were twenty-three present.
Not one of us can say we know all there is to know about the art of visiting and these sessions are not necessary. There is always something new to learn and the old can always bear repeating.
Thank you to all and I wish you all happy and successful visits. Keep up the good work!
Anne Lecot,
Visiting Co-ordinator.
These visits were as a result of the following types of surgeries:
70 patients with colostomies
31 patients with ileostomies
1 patient with Indiana pouch
13 patients with ileal conduits
2 patients with Pelvic Pouch
93 visits were post-operative
20 visits were pre-operative
15 visits were made by telephone
Many of visitors make second and third visits as well as follow-up phone calls - sometimes at a much later date than the original visit - these are not always recorded. The visiting program is the most valuable aspect of any ostomy association.
Let's keep ours alive and vibrant!
Respectfully submitted by Anne Lecot,
Visiting Program Co-ordinator.
Patients with the following ostomies were visited between March 1, 1999 and April 30, 1999:
Colostomy - 8
Ileal Conduit - 1
Ileostomy - 5
Pelvic Pouch - 1
Urostomy - 0
Total = 15