Dear Friends,
In a short time, ostomates around the world will unite in marking the third World Ostomy Day. For some associations it will be a celebration of achievements made, and goals met, since the last World Ostomy Day, three years ago. Others will seize the opportunity WOD gives to publicize the work of their association and bring to the attention of people in authority the needs of ostomates. No matter whether we come from a wealthy developed country or a developing country, our needs as ostomates are the same. We all need good quality, affordable ostomy equipment and professional aftercare. We want to have the same opportunities and choices in life as people who have not had to undergo stoma surgery. It is a sad fact that there are far too many ostomates in the world who cannot live their life in dignity. Let us use World Ostomy Day to inform our local communities and people in authority about the need of ostomates and by example demonstrate that ostomates have a great deal to contribute to their communities. Let us make a united effort across the world to show that we are one family, drawn together by a common cause. We must hope that by working together into the next millennium we can help ostomates world wide to benefit from our efforts. I wish you every success in your WOD activities. Have a happy and fruitful day.
Seven WOA members managed to find enough energy in mid August to travel to Edmonton and join with more than 150 ostomates from across Canada to participate in the 2nd Annual conference of the United Ostomy Association of Canada. Held at the Delta Edmonton South Hotel and Conference Center, we participated in a potpourri of business workshops ranging from visiting to newsletters, medical seminars on various aspects from IBD to urinary division, complex stomas, to nutrition, to medication, to physiotherapy and more.
"The Magic of Friends", where we renewed old friends and made many new ones, was a great experience. I hope to see you at next year's conference at the Hotel du Parc in Montreal where the theme is "Back to the Future".
AWARDS
MAPLE LEAF AWARD
Sheelah Zapf (Edmonton)
PRESIDENT'S AWARD
Dr. Zane Cohn (Toronto)
E.T. AWARD
Dianne Garde, E.T. (Toronto)
RENAISSANCE AWARD
Pat Cimmeck (Calgary)
ALAN PORTER AWARD
(presented by FOW Canada)
David Metcalf (Victoria)
PAST PRESIDENTS RECOGNITION PIN
Bette Yetman (Halifax)
Sheelah Zapf (Edmonton)
Please Note:
* elected to two year term
** beginning second year of two year term
PRESIDENT
Di Bracken ** (Halton-Peel)
VICE PRESIDENT
Les Kehoe ** (Oshawa)
SECRETARY
Pat Cimmeck * (Calgary)
TREASURER
Gene Zapf * (Edmonton)
PAST PRESIDENT
Bette Yetman (Halifax)
MEMBERS OF THE BOARD
Bill Aitken ** (Winnipeg)
Jean-Pierre LaPointe ** (Montreal)
Michael Paquet ** (Hamilton)
Kim Christiansen * (Edmonton)
Candace Miron * (Toronto)
Linda Warner * (Edmonton)
Dave Page
President
At the Edmonton UOAC conference, I had a mission: To make sure that our ostomy supplies would be safe at midnight on December 31, 1999.
Visions of ostomates' millennium celebrations being destroyed by non-Y2K compliant appliances had been haunting me for months! I often awoke in the middle of the night in a cold sweat. My nightmare? Ostomy appliances the world over failing as the clock struck midnight at the dawn of the new millennium. Old Lang Sine ringing in my ears and a warm wet feeling seeping down my leg.
I sought out senior executives from all the major ostomy manufacturers and they unanimously told me that our supplies are Y2K compliant!
So, have a happy new year. Your appliances will survive into the year 2000!
By Mike Leverick,
Your Ostomy Y2K Specialist
This is the final part 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. Thank you Barb for this excellent series of "myths". I have received many positive comments on them! Thanks again Barb!
I cannot say I've never had an accident. I have had 4 in the nearly 2 years I've had my ileostomy.
Three of the four were during a brief period of madness where I decided I knew better than my ET nurses and I ordered a bunch of sample appliances to try. I'd heard all about the wonders of the two piece so I wanted some Tupperware of my own - lo and behold they leaked on me. They just aren't built for my body shape. I also tried lightweight pouches that didn't have convexity. Guess what - they didn't fit me right either. If I'd stuck to what my ET prescribed I'd never have had these leaks. Now I stick with what works.
The fourth accident wasn't due to appliance failure, but rather due to my own stupidity! I lifted a heavy suitcase, leaned it against my abdomen, and let it slide down my body onto the bed. The suitcase became hooked onto my pouch clip and snapped it open. Ostomates - it's not a good idea to slide heavy objects down your tummy. It can lead to a messy situation.
So - all four of my accidents were of my own doing. If I'd stuck with what my very competent ET nurses told me would work for me and if I'd not been silly enough to slide a suitcase down myself, I could say with confidence - I've never had a leak.
BUT, what if I got a leak again?? I'd deal with it. Two of the four accidents I had were at home and two were not. Actually the first one took place at Murphy's Landing, a re-creation of a 19th century farming village, over an hour from my home. Luckily they had a bathroom with running water, but it sure wasn't private. I had to stand before a sink in a public restroom and change my appliance in a bathroom filled with other people. AND I DID IT! I know I could do it again. So I do carry my emergency kit - but I haven't had to use it once since I decided to stick with the appliance that was prescribed for me.
Whenever I see ostomates post about leaks the first thing I ask is: "When is the last time you were fitted by an ET nurse?" They always respond, "Never" or "Years ago." Phone your/an ET and get a properly fitted appliance.
Some of the things I eat fill me up fast, but it's my own fault and I choose to deal with the consequences. I'm a cola drinker and the caffeine does make things flush through pretty quickly. I also know some particular foods (Panino's - yumm, yumm) fill my appliance up quickly. So when I choose to eat these things I plan accordingly. No dinner and a movie - just dinner and home. Some ileostomates have difficulty with dehydration. I've experienced it myself sometimes, usually when I'm not paying attention; i.e. I walked around the Minnesota State Fair for hours in the sun without drinking anything. Dumb move. One of the two main functions of the colon is water absorption and although our small intestines do learn to absorb water, it is recommended that we drink a lot of water. Urostomates are also encouraged to drink a lot of water. On the plus side I don't have to watch my salt intake at all. My husband rarely sneaks my French fries anymore. They are way too salty for him.
Some ileostomates and colostomates experience blockages with some high fiber foods. I've only had a blocked feeling once - when I ate a raw apple without drinking anything at the same time. Most blockages can be freed without a trip to the Dr. Rarely does a blockage lead to more surgery.
Participants on alt.support.ostomy frequently post diet suggestions and home remedies to release blockages. However, everyone is different. Just as with ulcerative colitis and Crohn's disease, the impact of diet varies from individual to individual. For example, on the top of the standard list of ileostomy no-no's is popcorn. Well I love popcorn and have no problems eating it.
The bottom line is ostomates are just like everyone else. There are foods we can tolerate, foods we can't, and foods we can't tolerate but eat anyway. What those foods are vary from person to person. Just as with non-ostomates.
ET nurses do many things: They mark the proper spot for ostomy placement, paying attention to factors like belt lines and belly folds. They determine the appropriate appliance for patients. They help patients deal with any problems they are having. For example, it was an ET - 3 years after it happened - that figured out it was a paste allergy that caused my severe rash with my temporary ileostomy. A rash so bad that it caused me to have to have my ostomy moved to the other side. They provide counseling and advice for patients dealing with ostomy life. They coordinate friendly visitors so new ostomates can ask questions and find out what to expect. ET nurses also deal with open wound patients.
Most ET nurses are RNs who have additional training in ET nursing. There are a few LPNs who have gone through ET training. There are a few major programs around the US and I'm lucky enough to live in an area where ET nurses are plentiful since one of the schools was located in the Twin Cities. The first ET nursing program was in Cleveland, Ohio at the Cleveland Clinic. I know there are some parts of the US and the world where ET nurses are not available. If you are living in one of those areas and are having trouble with your appliance system I suggest you try to find an ET to see. The UOA national and regional conventions typically have stoma clinics where you can see an ET nurse during the convention. Most supply companies also have ET nurses on staff to answer your questions - a phone consult isn't the best, but it is better than nothing -and it's FREE.
The professional association for ET nurses is the WOCN. "The Wound, Ostomy and Continence Nurses Society (WOCN) is a professional, international nursing society of more than 4000 nurse professionals who are experts in the care of patients with wound, ostomy and continence problems. Wound, Ostomy and Continence (WOC) Nurses manage conditions such as stomas, draining wounds, fistulas, vascular ulcers, pressure ulcers, neuropathic wounds, urinary incontinence, fecal incontinence, and functional disorders of the bowel and bladder." The WOCN website is at http://www.wocn.org/. Check it out to learn more about ET nursing. The website features a search engine that can help you find an ET nurse near you.
I encourage anyone contemplating ostomy surgery to find a Dr. who works with an ET. If your surgeon doesn't work with an ET nurse then your cutter isn't cutting edge.
This, then, is where an Ostomy Association has been so useful. Patients with mutual problems find that they are not alone in this world with an ostomy. They find they are not the only ones who have been faced with this abnormal state of having an ostomy. They see other ostomates that are leading perfectly normal lives. This is the great psychological stimulant for an ostomate to recover and rehabilitate himself with the help and encouragement of fellow ostomates.
As a physician faced with diseases which require formation of ostomies, I welcome the assistance of the Ostomy Association as the organization of persons of all walks of life who can effectively assist ostomates in their emotional adjustments to their ostomies. They can demonstrate that life can be useful and normal, and they can help each other in coping with the "little problems" that are encountered in managing their ostomies. Participation in an ostomy group by ostomates can add a new dimension of usefulness as they find themselves helping others.
In my experience with people I have met through the UOA, I have heard repeatedly, "There are so many things they didn't tell me" or "If only I'd known..."
Well, there are a few things I've learned through trial and error (mostly error) that I can pass on to other ileostomates to maybe save them a little inconvenience or embarrassment.
If you use a two-piece system, give that pouch a tug after you snap it on. It may not be totally secured and it is really awful to have the thing slide down your pants leg when it's half full. Making a graceful exit is particularly challenging.
If you shower without your pouch, put your clean one on before you do anything else when you step out of the shower, unless you have a leopard print bathroom rug. Never answer the phone before putting on your pouch!!
Also, be careful with that hot water temperature! On a weekend trip, I actually scalded my stoma because I didn't check the "hotness" of the hot water. (I keep my water heater setting fairly low.)
No, ileostomates cannot wear stoma caps, unless you haven't eaten for a week. I had an awful experience with a stoma cap that had built-in air holes in it. I didn't realize how thin an ileostomate's output could be. Too bad I had to find out during an intimate moment.
Don't think you will be the exception to the rule about popcorn consumption. I was used to eating it by the tub-full before my surgery and didn't heed the warnings of fellow ostomates who told tales of painful popcorn blockages. It happened to me and it can happen to you.
Another rather foolish thing I did was actually pinch my stoma in the ring of the faceplate where the pouch snaps on. I changed from a regular size pouch to a mini-pouch for aerobics class. In my hurry, I didn't realize my problem until feeling some discomfort during class. Afterward I discovered I had actually pinched the tip of my stoma in the ring. I called the ET on that one.
Never, I repeat NEVER let yourself fall asleep with a mini-pouch on after you've had a high fiber dinner (like broccoli or carrots) unless you have rubber sheets. Unless you doubled up on your chlorophyll tablets, don't empty your pouch in a public restroom after consuming soup made with garlic, onions, cabbage or broccoli. The good news is I can laugh about all this stuff and maybe keep you from making the same mistakes.
Extra supplies - "DON'T LEAVE HOME WITHOUT THEM!!"
Saint John's Wort and Fluroxetine (Prozac). The combination can raise brain levels of the neurotransmitter serotonin. "Serotonin Syndrome" can cause delirium and other symptoms.
Ginko Biloba and anticoagulants. Like aspirin, warfarin (Coumadin) and other anticoagulants, ginko thins the blood. Taken along with an anticoagulant, ginko can cause internal bleeding.
The sigmoid, or left-sided colostomy, is often described as a dry colostomy because it discharges formed stool. One has the choice of attempting to manage this type either by trained control or irrigation control. Only one third of the people who attempt to train themselves to control their colostomy without irrigation are successful in doing so. This type of training relies very heavily on diet and medications to achieve regularity. Most physicians in this country feel that control is more easily and satisfactorily achieved by irrigation. However, there are some patients who cannot achieve irrigation control because they have an irritable bowel. This problem has nothing to do with the colostomy. It's just part of some people's makeup.
Some people, even before they had their colostomy, may have had very irregular bowel habits. They may retain their habits after their colostomy is performed so that regular irrigation does not assure them regularity. When this condition exists, physicians will sometimes suggest the patient dispense with irrigation since it will not produce the desired regular pattern, and the person may become frustrated trying to achieve this.
Female colostomates between the ages of thirty and fifty are in short supply. We also need more Pelvic Pouch and continent urostomy visitors, both female and male. Remember, we need you as you needed us when you had your surgery! Let's all help out and all do our bit.