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Evelyn Waldera is an active, energetic woman and one would never know that she is celebrating her fiftieth anniversary as an ostomate. I had the opportunity of interviewing Evelyn at her home recently and her story is both unique and encouraging.
She developed chronic diarrhea as a teenager while living in Redditt, in northern Ontario. Evelyn went to a doctor in Kenora who was unable to diagnose or resolve the problem. After being referred to Winnipeg, she was recommended wild strawberry extract as treatment for her diarrhea and tried several diets, all to no avail. In 1945, her father called the Mayo Clinic in Rochester, who referred her to the Winnipeg Clinic where she has been going ever since. One of her original doctors was Dr. Paul Thorlakson. She is now under the care of his son, Dr. Robert Thorlakson.
She was finally diagnosed with ulcerative colitis at the Winnipeg Clinic. Evelyn had a "temporary" ileostomy in March, 1946 at the Winnipeg General Hospital, while her colon rested. She was sent home from the hospital with no supplies(!) just a big binder and cotton wool, which she piled up over the stoma and strapped on with the binder. It didn't work very well, as you can imagine. A month after her return home, her father contacted a medical supply company in Winnipeg and got hold of Davol pouches. These were made of rubber and were sealed with an inflated rubber donut, which was pumped up at each fitting. The bags had to be scrubbed once a day and after a few months, the "donut" would expand to such a size as to require a new one. A year and a half later , in 1948, she had the colon and rectum removed and the ileostomy made permanent. This ileostomy lasted till 1992, when she had a revision, quite the life span!
Ten years later, she discovered that she could order Nu-Kumfort appliances from the United States. These had a steel plate which was attached to a regular plastic bag. Evelyn said that: "Every time I went on a plane, the detector would buzz!" She wore a big belt, with metal clips, to keep the bag in place. Evelyn wore these appliances until joining the Winnipeg Ostomy Association in 1972. Here, with the institution of the Manitoba Ostomy Program by the provincial government through the WOA's lobbying efforts, she discovered "modern" appliances.
She has been an active member of the WOA since. She speaks highly of Ab Foreman, Margaret Hurl, Hilda Kemp, Bill Logan and others for starting the WOA and greatly enhancing the lives of Manitoba ostomates. Evelyn is retired, but says that she's more active now than before when she was working. Even with the poor appliances with which she began, she still feels that her ileostomy was a positive thing. She is living proof of the success of ostomy surgery. She lives a full, active life and enjoys good health. Her story shows the medical advances made over the last fifty years. She is a great example, showing that ostomy surgery can save lives and enhance the quality of life as well.
At our February meeting, Jake Schmidt, from Keystone Counselling, gave an informative and entertaining presentation. He spoke about keeping balance in our lives and the importance of self-care. He stressed that if we don't look after (love) ourselves, that we will be unable to truly care for (love) others.
Richard Denesiuk from Creative Retirement Manitoba will be guest speaker on March 20th. He will be speaking about and demonstrating the World Wide Web. He will also be explaining what Creative Retirement Manitoba does.
Bonnie Schmidt will be retiring form ConvaTec on March 15th after many years of service to ostomates in Manitoba. We wish her well.
In April, Martin Levy from the Canadian Red Cross will be the guest speaker.
Our annual Wine and Cheese will wind up the year on May 15th. Hopefully by then, all this snow will be gone!
Stay healthy, Mike Leverick
Thinking back to those critical days of adjustment when your ostomy surgery was completed, you may only have wanted people around you that you trusted and loved. At that time you may have needed the support of a spouse, friend, or children. In order for those people to give you support, they needed to know what had occurred with your ostomy surgery. By sharing this information you were helped through what for some, was a very difficult time.
Once you were home, friends and neighbors started to call and come by to visit when you felt up to it. The question arose as to "Where do I tell them about my surgery?" Probably you thought about each person and his or her relationship with you-the closeness you felt for that person - and maybe, the sincerity of that person's concern for you. After considering these factors you may have made a decision to tell the person about your ostomy. Based upon the reaction to your story, you made another decision - to either tell or not tell about your ostomy to those who inquired about your health.
As your health progressed and you begin to return to work, the question arose again. "Should I tell my employer about my ostomy?" Here again a couple of questions needed to be asked. "Do I need support from my employer because of my ostomy? How does my employer knowing about my situation help me?" This becomes situational. For example, if I work an assembly line and must take pre-scheduled breaks, and I'm still adjusting to emptying my pouch, I may or may not need a different schedule for breaks than those enforced. My employer needs to know that I'm not just breaking rules but that I have a real need. I'm not just breaking rules but that I have a real need.
How do you tell someone you have an ostomy becomes a matter of who has a right to know, and how you will benefit from their knowing. To tell someone you have an ostomy becomes clearer when the benefits are weighed. Simply explain that you had some surgery for whatever reason you had your surgery, and it necessitated having an alternate route made for emptying either your bowels or bladder. By having had this surgery you were given the chance to increase the length and quality of your life. Share with the person whom you have decided has a right to know about your surgery, using pamphlets and brochures available from UOA and other sources. Educate those persons you believe have a vested interest in your well-being.
Source: Ft Worth, TX, via Anchorage AK, S. Brevard, FL and Metro Halifax News, 2/95
Gas Producing Foods
Bulk Forming Foods
Foods That Cause Change in Color
Red food dye
Green leafy vegetables
Whole grain wheat
Odor Producing Foods
Cod liver oil
Diarrhea Control Foods
Stoma Obstructive Foods
(Eat with caution)
Lobster, Shrimp, Crab
Foods That Alleviate Constipation
Increased fluid intake
Whole wheat bread
Odor Control Foods
Dallas Area Ostomatic News Via Gettysburg/Hanover 3/94
Adhesives in liquid form are packaged in cans, bottles and spray cans. Adhesives are either rubber base or acrylic base. Some contain fillers and other ingredients to help make them mild to the skin (non-toxic). Some are perfumed, some are colored. In any case, all adhesives are pressure sensitive, and as such, should not be applied heavily. The proper method of application is a very light and even coating on the desired area whether natural skin or skin treated with a protective barrier. Note: With urinary diversions, appliances are mounted directly to the untreated skin for the best bond. For ileostomies a skin barrier should always be used with an adhesive type of appliance.
Via MAOG, Memphis, TN, Vancouver Ostomy Highlife and Regina Ostomy News, 9/95
The ileoanal pouch procedure, also known as the pelvic pouch procedure, has evolved from the separate surgical concepts, preservation of the anal sphincter and the creation of a pouch using a portion of the terminal ileum. Preserving the anal sphincter mechanism was the goal when complete surgical removal of the colon and upper rectum with stripping away of the lowermost lining of the anus and rectum was necessary. The terminal end of the ileum was joined to the anus. Although initially reported by Nisen in 1933 most individuals credit the original papers by Ravitch and Sabiston in 1949 as pioneering the sphincter preservation operation. Unfortunately these early patients were troubled with excessive stool frequency, perineal skin excoriation and irritation. For some patients, they had in effect, an anal ileostomy.
The second surgical concept of an ileopouch reservoir to serve as a storage pouch evolved as an attempt to reduce excessive stool frequency and improve continence. The continent ileostomy was first described by Professor Kock in Sweden in 1969. The ileoanal or pelvic pouch has evolved from the combination of these two surgical concepts. In the late 1970's the first reports by Sir Alan Parks in London, England and Professor Utsinomya in Japan, on the use of an ileoanal pouch procedure appeared almost simultaneously. Since then the procedure has been modified and has achieved its current popularity. It has become our procedure of choice for individuals having to undergo surgery for ulcerative colitis and in selective cases, familial polyposis.
Classically the ileoanal pouch is created in at least two stages. The first stage involves a total abdominal excision of the colon and rectum down to within two centimeters of the dentate line, a surgical anatomical landmark. The rectal mucosa is then stripped away. A reservoir or pouch, using a small portion of the terminal ileum, is constructed. The pouch may be in a "J" or "S" or "W" shape. The pouch is secured to the anus. A proximal loop ileostomy is usually created, particularly when the pouch anal anastomosis is done using a hand sewn technique. Approximately three months later the ileostomy is closed and gastrointestinal continuity is restored.
Alternatively, for individuals who are ill when they come to surgery, initially a colectomy with an ileostomy is performed. A second stage procedure is then performed removing the remaining sigmoid colon and rectum and creating a pouch anal anastomosis often without an ileostomy.
Several controversial issues surround the pelvic pouch procedure. A "J" or an "S" shaped pouch has been our preference and it is generally reported that there are no major differences between these different types of pouch constructions. The functional outcome in patients who have ulcerative colitis is not as good as in those who have familial polyposis. This which would indicate that the inflammatory response or the disease process itself affects the outcome. Patients who are over the age of fifty do not do as well as those under the age of fifty, at least functionally.
More recently, we as well as others, have used the stapled ileoanal anastomosis as opposed to a hand sewn anastomosis. In most reports preserving the two centimeter lining of anus improves the functional result. There is very little risk of developing cancer in this residual anorectal mucosa. In only 4 of 165 patients that have had this procedure have there been symptoms related to the residual mucosa.
Whether or not one should do an ileostomy is also controversial. The rate of leakages at the ileoanal anastomosis appears to be somewhat higher if an ileostomy is avoided, however, the functional outcome in these patients is similar whether or not a leak has become evident or whether or not an ileostomy has been performed.
At the present time it is our tendency to do the following, when a patient presents with ulcerative colitis requiring surgery and is not particularly ill, then our preference is to do a colectomy and proctectomy and to create the pelvic pouch along with the defunctioning ileostomy. Three months later the ileostomy will be closed. If a patient is ill at the time of surgery, then we will do the colectomy portion first. This allows time for the patient to recover from the illness and the operation and to be removed from all medications. When health is restored, the patient will be brought back to the hospital. A pelvic pouch procedure will be performed, often without an ileostomy. However, when a hand sewn anastomosis is performed as opposed to stapled anastomosis, we will almost always defunction the pelvic pouch with an ileostomy.
Early post-operative complications include an anastomotic or pouch leak with or without local infection, pelvic abscess, small bowel obstruction and ileostomy complications. Late complications may involve bladder or sexual difficulties, stricturing or narrowing at the anal anastomosis, perianal skin irritation, bowel obstruction and importantly pouchitis. Pouchitis occurs quite frequently and is usually treated quite easily with antibiotics.
The answers to some of the controversial issues still need to be defined. Whether or not it is essential or dangerous to leave any anorectal mucosa needs to be studied further. The need for a defunctioning ileostomy is currently being assessed. One of the most important objectives over the next few years will be to define the cause and the management of pouchitis. This syndrome, characterized by inflammation within the pouch, may be similar to the actual inflammatory bowel disease that develops. Further studies in this area will certainly be useful. The surgical technique itself will not change considerably in the future.
The advent of laparoscopy with technological advances may allow us to do the entire procedure using a closed laparoscopic technique. However, this still awaits further technological improvement.
Source: Dr. Zane Cohen, Chief of Surgery, Mount Sinai Hospital, Toronto; via Pelvic Pouch Newsletter, Mount Sinai Hospital; via Metro Halifax News, April, 1995.
Dr. Zane Cohen is a Professor of Surgery at University of Toronto, and Surgeon-in-Chief at Mount Sinai Hospital, Toronto, Ontario. He has studied extensively in Europe and has been performing the pelvic pouch surgery since 1981. To date, in collaboration with Dr. Robin McLeod, they have performed over 600 pelvic pouch surgeries.
Patients with the following ostomies were visited in January and February:
Colostomy - 5
Ileal Conduit - 3
Ileostomy - 2
Pelvic Pouch - 1
Continent Urostomy - 1
Total = 12
Sure, you were shocked! you thought, "How am I going to get accustomed to this thing?" "What will my life be like?" Didn't we all have similar thoughts? Monopolize the bathroom? Take an enema? Change the appliance? Use a lot of valuable time? Embarrassment? Worry about diet, odor, what people will think and many others? Didn't we all have some of these problems?
Sure, we resent what has happened to us, but we can't resentful and grateful at the same time. We can't change that which has happened, but we certainly can do something about the future. Living is like playing poker - it isn't the cards you hold, but how you play them that makes the difference between losing and winning. We are not invalids. We don't need pity or sympathy, or special consideration or concessions. We are normal capable people.
The ostomy is yours to do with as you wish - you have a choice to take either of two paths - and the decision is yours alone. You can refuse to accept it or accept it - you can feel sorry for yourself - you can be bitter and resentful - you can withdraw from society and suffer the loss of the many fine things life holds for you. Or you can accept it - you can go on to live a happy, productive life and enjoy the extra time granted to you to continue doing the things you did before.
The proper training of the mind and body is not an easy job! Nature has not endowed all of us with the same ability to make correct decisions. Some persons find it easy to look at a situation from all angles and decide what to so. Others - because of a lack of knowledge, emotions, resentment, habit or other reasons - find it difficult to make a correct decision.
Ostomy surgery, thanks to medical skills, has provided us with a rare gift - the gift of a second chance, a chance to live, a chance not given to everyone. An ostomy is not a handicap; it is a new method of elimination - a lifesaving device. Don't be discouraged. Accept the ostomy. Prove to your self that you can take it. To find happiness, we must think about what we owe to ourselves, to others, to life - rather than what life owes us!
Via Ostomy Insight, Minot 5/93.
In a recent laboratory test conducted by ConvaTec, the blue color was found to be the result of normal bacterial action in the digestive process. It is the product of bacterial decomposition of an essential acid called Tryptophan.
According to a clinical article in the American Journal of Nursing, Tryptophan is part of your regular intake of dietary protein passing through your system. It undergoes a series of chemical changes that ultimately result in a blue color when it finally oxidizes in the urinary pouch.
There is no evidence that production of indigo blue is harmful or that dietary Tryptophan should be limited.
Via Metro Halifax News, via Regina Ostomy News, 9/95