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November 2003 Newsletter
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Our Next Meeting
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| Date | • | Thurs. Nov. 20, 2003 |
| Time | • | 7:00 pm |
| Place | • | Middlesex-London Health Unit 50 King Street, London |
| Guest Speaker | • | Karen Kozak, Hollister Representative. Learn about the newest developments in ostomy products. |
| ET Advisor | • | Judy Arnold Comcare Health Services |
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| December's Meeting • Christmas Get-Together | ||
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| Date | • | Tues. Dec. 9, 2003 |
| Time | • | 5:30, supper at 6:00 |
| Place | • | Swiss Chalet, 92 Fanshawe Park Rd E. By Masonville Mall – same as last year |
| Event | • | In lieu of a regular meeting, we invite you to join us for a few hours of friend- ship and fellowship at our traditional Christmas Dinner Get-Together. |
Gifts | • | If you would like to donate a small gift towards the raffles held at the Christmas Dinner Get-Together, please contact anyone on the Executive Committee. Gifts can be anything from a box of chocolates to something you made; should be suitable for either gender. Wrapping your gift would also be appreciated. Thank you so much! |
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LDOA Announcements 
42 Cedarwood Road |
Secretary Position Filled
Deanna Sterling has stepped up to the plate and filled the requirement of Secretary for our chapter.
Vice President Still Needed
Responsibilities • Assisting the President in arranging guest speakers, conducting the meeting if the President is unable to attend, and assisting with general matters concerning LDOA. Contact Caroline Chiasson at 643-0124 if you are interested.
Membership Fees Due
You can help LDOA in a big way by paying your $30.00 member- ship renewal fee when it's due. This ensures uninterrupted delivery of the Ostomy Canada magazine and this newsletter. Fees are due either by June 15th or December 15th. If you are unsure as to which of the two dates is your renewal date, please contact our Treasurer,
Discussion Forum
LDOA’s Discussion Forum is now available. Discuss any ostomy-related issues in a supportive online environment or connect with fellow ostomates and share. There won't be many messages posted yet, but that will change in the weeks to come as we promote the forum. So stop by and have a look around.
Missing Member
It is important to keep us informed of your current address. Heather Karr's newsletter was returned as "address unknown". If anyone knows where Heather Karr has moved to, please advise Thank you.
Printing Firm Sponsor
LDOA is looking for a printing firm sponsor. If you have connections or know of a company that would be willing to donate their services to print our newsletters and brochures, please contact our Newsletter Editor, As a gesture of appreciation, LDOA offers a print ad for the firm in each news- letter, a sponsor-type ad on the web site, and a "Printed by our Sponsor ..." promo line in the brochures. Thank you.
In Memoriam
We are saddened to advise of the passing of our member, William "Bill" Davis, who died peacefully at Parkwood Hospital on October 22nd in his 57th year.
Bill is survived by his wife, Donna, and two children,
Tim and Sara. He will be remembered by many friends at London Health Sciences Centre, Victoria Campus, where he worked for 34 years, as well as our Chapter, wherein he was a member since 1992. We extend our condolences to Bill’s family and friends.
Reminders
LDOA’s newsletter is published bi-monthly and, accordingly, there was no newsletter in October.
Please send your contributions for January’s newsletter to no later than December 23, 2003.
Return to Top From the President's Desk
For those of you who may not know, John Jory moved to Orillia in October. LDOA wishes him much contentment and happiness. John is going to try to come to our December dinner meeting. Hope to see you, John, and I know everyone is hoping the same!
Also wishing speedy recoveries to Joy Ibsen and Dorothea Crover, and anyone else out there who has not been well.
I’m hearing of many skin problems around stomas. We will have a discussion about this. Make a note about your particular problem and just maybe someone has tried something useful that would help you.
Some of the Executives will be attending nearby ostomy chapter meetings to touch base, so to speak. Stratford meets November 4th and myself, Edith and Deanna are going to that meeting. We’ll fill you in at our November 20th meeting.
And speaking of meetings, you may have thought, "I've had my ostomy for several years and I'm doing OK now, so why do I need to attend meetings?" Well, consider this. If no one came, there wouldn’t be an LDOA chapter. Simple as that.
Think back to your first meeting and what it felt like to know you weren't the only one in town with a "bag". Think about the positive impact it can have on a new ostomate who sees fellow ostomates for the first time living active and productive lives after surgery. And what could be "old hat" to you could be the most important fact to a new ostomate. So please don't think you aren't important.
Did you start out with the old karaya ring appliance that melted almost as soon as it was applied? How did you learn that there was something better? Could it be that you learned about new products at a meeting where an ostomy products manufacturer's representative was there? In fact, our guest speaker at the November 20th meeting will be a Hollister rep. Much can be learned about the next generation of ostomy care and products.
In short, LDOA needs you and the new ostomates need you! We urge you to attend if for no other reason than to inspire us with your presence! Thank you.
Return to Top ET Corner
Each newsletter, London’s ETs answer your concerns
| Submit your questions or concerns in writing at an LDOA meeting or send them to your ET (Enterostomal Therapist) by e-mail. |
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What would make a pouch fall off after 2 or 3 hours when it’s been locked on? |
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There could be several reasons for this: |
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Are there any activities or exercises that an ostomate should refrain from or limit doing? |
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The first 6-8 weeks following surgery is the time to be cautious and do not lift more than 10 lbs. or move heavy objects. After that time, if your incision is healed, there is generally no reason why you cannot gradually return to the activities you enjoyed before. Ostomates are from every walk of life and participate in every sport and leisure activity imaginable. Certainly, when playing contact sports you need to protect your stoma, however, hockey, baseball and football are not out of the question if these were sports you participated in prior to surgery. If concerned, ask your surgeon before beginning. |
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What do you suggest for itchiness around the stoma? |
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You need to see your ET for the cause of the irritation. It could be a variety of things, such as a yeast infection, sensitivity to the appliance, or leakage, etc. |
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What can I do about severe rashes or bumps regarding peristomal skin care? |
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See your ET before a skin problem becomes severe. She will be able to diagnose the problem and provide the appropriate care. |
New Ostomates: Depression and Grief
This article discusses an ostomate's stages of coming to terms with having an ostomy from a caregiver/family member's point of view. The article, which appeared in the printed version of LDOA's newsletter, was taken directly from this site's Articles Library. Click here to read the article. Click your browser's back button to return to this page.
Return to Top 
Excerpts from the
UOA Evansville
Re-Route Newsletter
For those members who have not yet discovered the wit and wisdom of UOA Evansville Chapter's newsletter, The
What’s Normal For Your Stoma?
What is normal for my stoma? This is an often asked question. So here are some answers from your stoma to you.
My colour should be a healthy red as I am the same color as the inside of your intestine. If my colour darkens, the blood supply might be pinched off. First make sure your pouch is not too tight. It should fit 1/16 to 1/8 inch from the base of the stoma. If I should turn black (very unlikely, but it happens) seek medical treatment AT ONCE. Go to an emergency room if you cannot locate your doctor. Be sure YOU remove the pouch for them to examine me. Take an extra pouch along. I might bleed a little when cleaned. This is to be expected. Do not be alarmed. Just be gentle, please, when you handle me.
If I am an ileostomy, I will run intermittently and stool will be semi-solid. If you should notice that I am not functioning after several hours and if you develop pain, I might be clogged. Try sipping warm tea and try getting in a knee to chest position on the floor (have your shoulders on the floor and your hips in the air. Rock back and forth in an attempt to dislodge any food that might be caught. If I do not begin to function after about an hour of this, call your doctor. If you cannot locate him, go to an emergency room. In the meantime, I might have begun to swell. Remove tight pouch and replace it with a flexible one cut slightly larger.
If I am a colostomy located in the descending or sigmoid colon, I should function according to what your bowel habits were before surgery – daily, twice daily, three times weekly, etc. I can be controlled in most cases with diet and/or irrigation. This is a personal choice. As long as I am working well, my stool will be fairly solid.
If I am a urinary diversion, I should work almost constantly. My urine should be yellow, adequate in amount and will contain some mucous. If my mucous is much more excessive than usual, I might have an infection. I will probably also have an odour and possibly a fever. Consult your doctor if that is the case. If at any time, you doubt that I am functioning normally, please seek help. The cause needs to be evaluated. If your problem is a serious one, it needs correction. If it’s not, you will be relieved to know that all is well.
Stoma Shapes and Leakages
Are you aware that stomas sometimes change shape? This can happen when you change from a standing to a sitting position. Mirrors are handy gadgets – take a look! The stoma that is nearly round when you are lying down or standing, may be oval when you sit down. This may be a source of a leaking problem and merits some thought.
The natural lubricant of the intestines is mucous. No adhesive will stick to the stoma because of the mucosal lining. Therefore, any part of the faceplate that comes in contact with the mucous on the stoma automatically will refuse to stick. Thus, the seal around the stoma does not change even though the stoma shape changes. This means that if the stoma is oval in the sitting position, perhaps the opening on the faceplate should be oval. This parti- cularly applies to people who are sedentary most of the day. This is not an absolute rule, but a consideration if you find a leakage problem. Note: most ostomates get a better seal by applying their pouch in a standing position.
Stomal Revisions
The term applies to a surgical correction of the stoma. This may be a small procedure performed in an out-patient surgery, or it may be a procedure requiring hospitalization. Four reasons for revisions are: a tight stoma; a prolapse (when the stoma slips or "falls" from its normal position); a retraction (when the stoma becomes so short that it is below skin level); or, in the case of a hernia, so near the ostomy that it interferes with management. But please bear in mind that these conditions may be present without causing much trouble – in which case a revision is not needed.
The need for revision of a colostomy stoma occurs infrequently, probably less than 5%. On the other hand, the need for revision of ileostomy stomas occurs much more frequently, between 10% and 15%, due to a number of reasons.
First, the average age of ileostomates is much younger than that of colostomates, so they must live with their ostomies for a much longer period of time during which factors can arise necessitating stomal revision (e.g. massive weight gain, trauma, unrelated disease and the like).
Second, many of the diseases for which ileostomies are performed tend to recur and can sabotage a beautifully made, functional stoma. Our old nemesis, Crohn's Disease, is one of the greatest offenders in this regard.
Finally, ileostomy stomas are simply more "finicky" than colostomy stomas due to the looser and caustic character of the stool at that point in the intestinal tract, and so they tend to cause more problems. Return to Top Be An Understanding Family Member
10 tips for spouses and family members of ostomates
Be tolerant! This condition may be new to all of you. It will change your lives, but it does not END your lives. You'll need to get comfortable talking about diarrhea and stool – and even better, you may learn to laugh about it!
Educate yourself. Any condition having to do with farts and feces isn't likely to be something you read about every day. In this instance, the Internet is probably a good place to start.
Educate others. Unthinking relatives and friends can make hurtful statements. Especially with digestive issues, there's a lot of theory. Be ready to educate some folks, and for the rest, plan how to avoid talking to them about that subject.
Learn to hold it. Your spouse / parent / sibling will use the bathroom – a lot. Everyone in the family needs to be understanding about your spouse’s / parent’s / sibling’s situation. Sometimes that means finding another bathroom. Sometimes that means getting out of the bathroom quickly. Sometimes that means you just hold it.
Be the press person. That is, it is sometimes difficult for your spouse / parent / sibling to explain to people why she or he must use the bathroom immediately. If it comes from you, it may spare them some embarrassment.
Make sure everyone knows about your spouse’s / parent’s / sibling’s diet. You don't even have to explain this one – blame it on allergies. When family events are scheduled, be sure your spouse’s / parent’s / sibling’s special diet is taken into account.
Conversely, choose restaurants based on your spouse’s / parent’s / sibling’s diet. This may mean no Mexican or Indian food. When it comes to restaurants, don't put the burden or guilt on your spouse / parent / sibling.
Know your doctors. Your spouse / parent / sibling may often be medicated and unable to speak for him- or herself. You need to be aware of the issues, be in contact with the doctors and ET, and have all the emergency medical numbers on hand at all times.
Plan everything. Your spouse / parent / sibling is going to need access to bathrooms. This means no long trips on deserted roads. It means getting a seat next to the toilet on buses and planes. It means knowing the whereabouts of the rest rooms before you go shopping in a mall. And if you can't get to a rest room fast enough ...
Be sure to have a spare change of clothes for your spouse / parent / sibling.
Return to Top Patch Testing
Some ostomates can use anything on their skin and “get away with it”. Others have to search for just the right combination of products for satisfactory use. New ostomates benefit from the follow-up visits to the ET because careful consideration is given to the various products used around the stoma area. If you are experimenting on your own, consider the following information for using a different product.
Patch testing is recommended before proceeding to use a new product. The skin on the inner surface of the arm or leg or the opposite side of the abdominal area from the stoma are good areas to use for a simple test. For example, cut a piece of the wafer, tape, etc. and affix it to a chosen area. Secure with a strip of micropore tape and leave on the area for 48 to 72 hours. Be careful of the tape as it, too, could be a problem. Any burning sensation or itching during the testing time could signify sensitivity to the material being used and, therefore, should be removed immediately, washed and dried well. After 48 to 72 hours, remove the “patch” and if there is no redness or irritation, it is safe to assume that the product can be used. With some persons, a delayed reaction may not occur until a few days later. For more extensive testing than this, see your ET or contact a dermatologist.
Return to Top | Some Helpful Hints From |
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For medicines to work quickly, drinking plenty of water helps them dissolve faster and provides less chance of irritation to the esophagus. Ileostomates and those who have fast output should use liquid medicines or soft dissolving pills for quick absorption. Gelcaps may not dissolve fast enough to be absorbed by those who have little or no colon. Remind your doctor of these problems when you need a prescription and your pharmacist when filling your prescription.
Before starting colostomy irrigation, fill the tube with water to expel air. If the irrigation bag is placed at too high a level, the increased flow of water could cause cramps. Never irrigate during a bout of diarrhea.
Salt in the urine will deposit crystals on the stoma and faceplate – rubbing of the crystals on the stoma may cause bleeding. Clean the crystals from the appliance by soaking in a solution made of one part of vinegar and two parts of water.
Use cool to lukewarm water when rinsing your appliance as hot water tends to seal in odours, particularly in plastics.
If carbonated drinks result in gas problems, a shake of salt or sugar will cause fizzing. When the fizzing stops, it is flat enough to drink.
Leaving a little air in the pouch after emptying will allow wastes to flow down easily.
A small amount of salad or baby oil may be inserted in the pouch and massaged to coat the inside and make it easier to empty contents.
Mouthwash, toothpaste or a sprinkle of cinnamon in your pouch will help to dispel odour upon emptying.
To avoid splashing, float some toilet paper in the toilet bowl before emptying your pouch.
When ill with a virus and associated diarrhea, eat pretzels – they stay down and the salt helps your electrolyte balance.
Itching under the appliance could be a sign of dehydration. Drinking 2 or 3 glasses of water over a short period may relieve the problem and prevent an early appliance change. Itching may also indicate that stool has leaked onto the skin.
Return to Top IOA Charter of Ostomates’ Rights
It is the declared objective of the International Ostomy Association that all ostomates shall have the right to a satisfactory quality of life after their surgery and that this Charter shall be realized in all countries of the world.
The ostomate shall:
Receive pre-operative counseling to ensure that they are fully aware of the benefits of the operation and the essential facts about living with a stoma.
Have a well-constructed stoma placed at an appropriate site and with full and proper consideration to the comfort of the patient.
Receive experienced and professional medical support and stoma nursing care in the pre-operative and post-operative period both in the hospital and in their community.
Receive full and impartial information about all relevant supplies and products available in their country.
Have the opportunity to choose from the available variety of ostomy management products without prejudice or constraint.
Be given information about their National Ostomy Association and the services and support which can be provided.
Receive support and information for the benefit of the family, personal caregivers, and friends to increase their under- standing of the conditions and adjustments, which are necessary for achieving a satisfactory standard of life with a stoma.
Receive assurance that personal information regarding ostomy surgery will be treated with discretion and confidentiality to maintain privacy.
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Issued by the International Ostomy Association Co-Ordination Committee June 1993, revised June 1997 |
The International Ostomy Association is an association of ostomy associations committed to the improvement of the quality of life of ostomates and those with related surgeries worldwide. It provides its member associations with information and management guidelines, helps to form new ostomy associations, and advo- cates on related matters and policies.
Return to Top Learning the Art of Getting Well
by David Spero – RN, Journalist and Health Educator
A crucial element of self-care is conserving energy for healing. It's amazing how much people can improve when they cut back on work or some other demand. Folk wisdom says, "Illness is Nature's way of getting us to slow down." I think Nature needs another way, because this one isn't working. We're rushing through our lives faster than ever before. However, when we're dealing with chronic health conditions, we really need to slow down (unless we're complete couch potatoes or, in some cases, severely depressed).
It's a question of energy. Like all creatures, we each have a supply of energy, a level that can be increased with various health practices, but will always be limited. That energy has to serve us for work, social and mental activities, growth, and also for our bodies' healing and maintenance. I believe that if we give all our energy to work, worry, entertainment and other demands, our bodies' defense and repair systems won't have enough to do their job. If we want to get better, we have to save some life force for ourselves.
Many of us refuse to cut back at all; others will reduce their schedules to accommodate health problems, but only by the minimum amount possible. Maybe we can keep working 35 hours a week but only by giving up everything else. So our health continues to deteriorate; we grudgingly cut back more and, pretty soon, we're totally disabled. Do whatever must be done to get time and energy for healing. Not just to lie around vegetating – activity is important, too – but to find help, connect with our bodies, figure how to make our lives work. Much as society hates it, it's OK to take some down time.
In this society, most of us are moving way beyond our healthy speed. The race runs through our waking hours and often invades sleep. We fear the ever-rising tide of responsibilities will over- whelm us if we slack off, even momentarily, or that we will miss some vital opportunity. Meanwhile, the pain builds in our organs and muscles, the healing systems start to wear down, and the next thing you know, the doctor is recommending a triple bypass.
When we get sick, it's better to take the opportunity to stop and listen to our bodies. We may have to figure ways to cut expenses; we may have to ask for help; we may have to change our view of ourselves, from worker bee to something more relaxed. If we judge ourselves by how much we get done, slowing down can be hard on our self-esteem. We need to learn that we can be valued and loved for who we are, not just for what we do.
Setting Priorities
It's not always other people's needs and wants that make us crazy. Just as often, our own desires for material possessions, recognition, power, or personal growth cause us to overwork and drive our bodies like beasts of burden. We don't just burn our candles at both ends – we vaporize them with a blowtorch! Sometimes, we find ourselves wanting to have, do, and be more, when we really need to rest, to get ahead of the curve.
We also have to learn to set priorities. Some things are really crucial, more important than health, even, but a lot of things we treat as necessities are really optional, and we can conserve energy for ourselves by letting them go. Is Better Homes and Gardens coming over for a photo shoot today? Is royalty coming to visit? If not, maybe cleaning behind the refrigerator can wait. Do we have to go to the next town to buy from a particular hardware store or bakery? Do we need to go to that meeting we know will be a waste of time? Do we really need another car or a bigger home?
The answer is usually "No". If we do cut back, if we get ahead of the curve, we often find that seemingly uncontrollable health prob- lems can become stepping stones to more comfortable, better lives. If we refuse to give in and insist on keeping up an unlivable pace, the curve may roll over us, and it probably won't be pretty.
David Spero is a 51 year old registered nurse, journalist and health educator living in San Francisco. In 1989, he was diagnosed with multiple sclerosis. He struggled for years before beginning to absorb the lessons of his illness. In addition, he counsels and coaches people with all types of chronic conditions.
The Art of Getting Well: Five Steps to Maximizing Health When You Have a Chronic Condition © 2001, Hunter House Publishers,
Alameda, CA • Reprinted with permission.
Return to Top Visitor Training Workshop Memorandum
A voice from the not-too-distant past calls out to us
Deanna’s Comments • Recently I was surfing UOAC’s web site, and imagine my surprise when I came across this memorandum written by our Past President, John Jory, with respect to the last Visitor Training Workshop held in February 2002. Seeing as how another workshop will be held in the Spring of 2004, I thought it would be relevant to reprint John’s memo for those of you considering becoming certified visitors to get a general idea of what takes place at a workshop.
On Saturday, February 2, 2002, LDOA held a Certified Visitor Training Seminar and it was a winner. We had five ETs as the Management Team – they individually gave an outstanding presentation. There were 12 participants from London and two from the Stratford Chapter. The storm prevented out-of-towners from arriving.
I have already had some requests to hold the Training Seminar at other chapters and will do so when the weather improves. In the meantime, it was exciting to have the ETs ask when they could start using the new Certified Visitors!
The seminar was held at the Middlesex-London Health Unit, which offers an ideal classroom environment complete with chairs arranged in a semi-circle and overhead projector. We used a number of transparencies and flip charts.
Our "gathering" started at 9:00 a.m. with coffee, tea and Timbits. Several of the participants set up the reception area to ensure all the forms were completed and to collect $5.00 which was applied to lunch brought in from a local restaurant.
At 10:00, an overview regarding UOAC, the visitor program, professionalism and quality control was presented (20 min).
The ETs then discussed the four phases of Psychological Recovery (30 min), and then into Anatomy and Nomenclature [glossary and terminology] (30 min).
12:45 • After lunch, a discussion about Crohn's and Colitis.
1:15 • The Art of Visiting – hints, advice, techniques, active listening and role playing. The follow-up to the visit – always leave a current newsletter as an invitation to the next meeting.
The seminar was technically over at 3:00, but the question and answer period kept us until later in the afternoon. All the questions were pertinent and necessary and handled extremely well by the ETs – but we agreed more time for role playing was needed.
Next Visitor Training Workshop
If you are interested in becoming a certified visitor, contact our Visitor Co-Ordinator, Brenda Turner at (519) 681-5973. This invitation is also extended to the surrounding chapters in Southwestern Ontario. The next workshop is slated for Spring 2004 but start thinking about it now! Naturally, an exact date and more details will follow the closer we get to Spring.
For an earlier article concerning visitors and the Patient Care Program, please refer to the September 2003 newsletter article Where Does the Help Begin? Click your browser's back button to return to this page.
Return to Top Urostomy Concerns
Dealing With Urinary Infections
Germs are all over the world, but when they are in the urinary tract, either in the conduit, the ureters or the kidneys, they are in an abnormal location, which can lead to an infection. Infections can also be caused by an obstruction, kidney stones, tumors, cysts, or scar tissue. Almost synonymous with obstructions is infection, and then too often comes stone formation. Once you have a stone formation, you cannot get rid of the infection. Infection can be caused by urine being forced back to the kidneys through the conduit. This could be done by falling asleep with the appliance full of urine and accidentally rolling over on the pouch, causing urine to be forced back into the stoma through the urinary tract with tremendous pressure. Invariably, the urine in the appliance will be contaminated.
Be aware of the symptoms of a kidney infection: elevated temperature, chills, low back pain, decreased urine output or cloudy urine. People with ileal conduits normally produce mucous threads in urine which give a cloudy appearance, but bloody urine is a danger sign. If these symptoms develop, see your doctor.
In general, to prevent and treat infection, you need a good flow of urine much like a stream. That not only dilutes the bacteria or germs in the urine, but also helps wash them out. Two and a half liters of liquids daily are required for the average adult. Night drainage is a MUST, otherwise, you run the risk of urine backing up into the kidneys, which can cause irritation or infection. This is especially important for urostomates with only one kidney.
The secret ingredient in cranberries, which is pivotal in preventing urinary infections, is concentrated tannin in the juice. Cranberry juice has been found to be effective in reducing the incidence of urinary tract infections and the need for antibiotic treatments.
This has important implications for persons with continent diversions and ostomies for several reasons. Recurrent urinary tract infections can be common with persons who catheterize frequently. These can be more prominent if hand washing and cleaning of the catheters is not performed routinely. Furthermore, a large proportion of women over 65 years of age – a major representation – will experience at least one urinary tract infection each year.
How does this ingredient in cranberry juice work? The concentrated tannin from cranberry juice prevents E Coli bacteria, the main culprit in urinary infections, from adhering to the cells that line the urinary tract. It is believed that the substance blocks the growth of the part of the bacteria that is necessary for it to stick to the walls of the bladder and kidney.
What are the implications of this for persons who may be more susceptible to urinary tract infections? Well, adding cranberry juice to one’s dietary regimen in circumstances where urinary tract infections have a high incidence would be sensible. In addition, it would probably reduce both the incidence of infections and need for antibiotic treatments.
Reprinted from Winnipeg Ostomy Association’s Newsletter "Inside Out Online" •
January/February 2003 • May/June 2002
Return to Top Colorectal Cancer
This article discusses the risk factors, symptoms, diagnosis, common screening tests, progession and treatment of colorectal cancer. The article, which appeared in the printed version of LDOA's newsletter, has been given a web page of its own in the Articles Library and further elaborated upon, including photos, diagrams and several endoscopy videos. Click here to read the article. Click your browser's back button to return to this page.
I Almost Died of Embarrassment!Actress Barbara Barrie speaks out about colorectal cancer
Barbara Barrie is probably best known for her portrayal of Brook Shield's Nana on the NBC sitcom, "Suddenly Susan" (1996-2000). She has been actively working as an actress in film, TV and theatre for the past 40 years and has received numerous awards. She is married to Jay Malcolm Harnick since 1964 and has two grown children, Jane and Aaron, both actors.
However, nothing could not have prepared Barbara, now 72 years old, for the ordeal she faced about 9˝ years ago when she was diagnosed with colorectal cancer. Since that time, Barbara has been through three operations, chemotherapy and radia tion treatment, and now has a colostomy. But she still wears bathing suits and leotards and she divides her time between acting, writing – she's written 3 books – and activism about colon cancer.
When asked why has it been so difficult to convince the public that a colonoscopy and/or other screenings of the colon and rectum can prevent colorectal cancer, Barbara had this to say.
In my opinion, the tradition of Puritanism has sealed our lips. We have always been forbidden to talk about certain parts of the body that are "dirty" or "off-limits", such as the colon, rectum, anus, vagina, penis and women's breasts.
In the last few years, however, the subjects of the colon and rectum have begun to lose their taboos, and we are getting closer to acceptance. And people have decided that they really would rather live than die of a disease they don't want to talk about!
Nine and a half years ago, I refused to recognize my own symptoms until, bleeding and weak, I fainted in a hotel room in Charleston, South Carolina. Had I been screened for colorectal cancer two or three years – or even one year – before, I might have detected the disease in an earlier stage and saved myself seven weeks of radiation and one year of chemotherapy.
I urge everybody over the age of 50 to rush to your doctor and demand a colorectal cancer screening, such as a colonoscopy. If you have a history of colorectal cancer in your family, you must demand earlier screening no matter what your age. In my opinion, it is preferable to have a complete colonoscopy because a sigmoidoscopy, which examines only the lower part of the colon, really is not a thorough picture.
My cancer resulted in a colostomy, which, contrary to popular belief, has enabled me to regain my health and lead a full, active and interesting life. My book, Don't Die of Embarrassment, also deals with the reality of a colostomy.
Return to Top Suggested Reading
From the Publisher • Every year 70,000 people in the United States and Canada undergo colostomies. In 1994, Barbara Barrie became one of them. When the successful actress received the diagnosis of colorectal cancer, she knew that this was the greatest crisis she and her family would face. But it also became an adventure that, through courage and humour, brought new joys and a greater appreciation to her life. More than just a memoir, Don't Die of Embarrassment provides valuable info about the ostomy experience. A valuable guide for people learning to adjust to an altered lifestyle after surgery. | ||||||||||||||||||||||||||||||
Further Reading • Read an in-depth interview with Barbara Barrie in the Articles Library • Interview With Actress Barbara Barrie, wherein she openly talks about her experiences with colorectal cancer and her colostomy.
Read and listen to a similar interview given by Barbara Barrie at the American Cancer Society's Cancer Survivors' Network
Return to Top Fluids and Electrolytes: Your Body’s Power Source
by Gener Galindo in "Ostomy Observations", a publication of
Nu-Hope Labs, Inc.
Just as your car's battery needs charging with water and electric force, your body demands the same. In fact, both you and your body just won't run without the proper balance of this vital power combination.
Body fluid balance is particularly critical to people with urinary diversions or gastro- intestinal stomas. That's because the surgical changes and required compen- sations in body functions may accelerate changes in fluid balance and accentuate the impact of the imbalance on the ostomate's total body health.
Year-Round Awareness
Maintaining proper body fluid balance is important to everyone. It applies to well-conditioned athletes engaged in rigorous compe- tition and to more sedentary workers involved in demanding physical or mental activities or environments. It applies to men and women equally. It isn't seasonal. Hot and humid summer weather stresses its need. But winter's weary physical attrition and draining illnesses create equally serious body fluid imbalances. Regulation of bodily fluid balance is a year-round business for everyone.
Why Are Electrolytes Important?
Electrolytes are chemicals, such as salts and minerals, that break up into ions (electrically charged particles) when they are dissolved in body fluids or water. Examples of electrolytes are sodium, calcium, chloride and potassium. Electrolytes are primarily responsible for the movement of nutrients into cells and the movement of wastes out of cells. The balance of these electrolytes determine just how well or poorly our body's entire system performs its complex vital functions.
What Causes Body Fluid And Electrolyte Deficiency?
The most common causes are (1) severe or extended illness involving high fever, vomiting, or diarrhea; (2) long periods of extremely hot weather and perspiration; (3) extraordinary physical exercise or work activity; and (4) extreme changes in diet or reduced fluid intake. Your body will release large amounts of body fluid through your skin, lungs and kidneys when elevated temper- atures occur. This is a natural response as a safety valve to relieve an overheated system. In the process, you not only deplete normal body fluid content but also dissipate its natural balance of electrolytes and body chemistry.
What Does Body Fluid and Electrolyte Deficiency Do To You?
A very wide and differing combination of nervous and muscular disorders may occur depending both on the degree or extent of the electrolyte deficiency or whether the fluid imbalance is a deficit or an excess condition. The impact can vary from small to great, from tremors to convulsions, from diarrhea to constipation, from fatigue to paralysis, from slow to rapid breathing, from low pulse rate to cardiac arrest. However, it is unlikely that any these condi- tions will happen to you. The thing to remember is that with any measurable change in your electrolyte levels or your body fluid balance, you are just not going to feel like yourself. You may feel tired all the time, experience a tingling sensation in your fingers or toes, or just generally feel out of sorts. But you need not if you keep your body balanced with fluids and electrolyte content.
What’s the Solution?
The obvious solution is the intake of greater amounts of water and at the same time a much greater than average intake of vital electrolytes. The average person with a reasonably good diet regime may get sufficient electrolyte and fluid input for his every- day energy replenishment but, after severe body stress, will require an increased electrolyte supplement to the extra intake that the body is demanding.
For ostomates, particularly those with urinary diversions or gastrointestinal stomas, it is probably beneficial to supplement your electrolyte intake not only in these special periods of body stress, but also to consider a reasonable regular electrolyte supplement to your normal diet.
When serious illness or surgery is the cause of body fluid/ electrolyte imbalance, the physician will recommend a restorative program. But for the more common occur- rences related to weather, minor illness, overwork, or exercise, there are simple home remedies you can apply. Orange juice and bananas can add potassium and vitamin C. Bouillon or canned soups will boost sodium.
The thing to remember is don't let your body battery run low on fluid and electric force. Maintain a proper body fluid and electrolyte balance and take restorative action whenever heavy physical work, play, illness, or weather diminishes your fuel supply.
Return to Top Pelvic Pouch: Diet and Diarrhea
by Claudia Mueller, MS, RD, LD – Dietitian and Nutritionist
The ileo-anal reservoir procedure is common for patients who must have their colon removed. The reservoir is formed from the small intestine and provides a storage place for stool in the absence of the colon. Initially the pelvic pouch goes through a period of adaptation that may take as long as a year.
With the colon gone, large quantities of fluid are lost with the stool. Initially, bowel movements may be as many as ten times a day. As months pass, the pouch storage capacity increases and the number of bowel movements per day decrease. Stool consistency thickens over time. However, there are some patients who have up to 20 bowel movements per day. Dietary changes may help decrease the number of bowel movements.
Foods that have been associated with diarrhea have been mostly self reported by patients. Some foods that have been reported to increase pouch output are raw fruits and vegetables, nuts, popcorn, beans, fried and spicy foods. Some of the foods reported to help slow pouch output are yogurt, applesauce, tapioca, bananas, potatoes without the skin and cheese.
The causes of diarrhea are varied. Studies have reported late night eating to be associated with diarrhea. Infections, medica- tions, excesses of some vitamins, minerals and even herbs can cause diarrhea. If not corrected promptly, diarrhea causes dehy- dration when the body loses too much fluid and electrolytes (potassium and sodium). General signs of dehydration are thirst, a decrease in frequency or quantity of urinating, dark coloured urine and lightheadedness. The fluid and electrolytes lost during diarrhea need to be replaced promptly. Although water is impor- tant in preventing dehydration, it does not contain electrolytes.
Excessive consumption of some foods may cause diarrhea. Classic examples are alcohol, caffeine, refined sugar and fat. Coffee, tea cola and chocolate are high in caffeine. High fat content in foods should be considered, as fats may irritate the bowel causing fluid to be drawn in, especially with an ileal resection.
Treatment of diarrhea depends on the cause. You may want to limit high sugar desserts, honey and other concentrated sweeteners, soft drinks and sweetened fruit juices. To cut your sugar consumption, read labels and beware of ingredients ending in "ose" – a red flag for hidden sugars.
Soluble fiber may be a benefit. These water soluble fibers stay in the stomach longer and help slow food absorption in the small intestine by forming a gel. Some examples of foods high in soluble fiber are oatmeal, cooked carrots, potatoes without the skin and unsweetened applesauce.
Prevention may be your best defense against dehydration; consume adequate fluids and electrolytes. Some of the fluids that help replace electrolytes are salted broth and soups, tomato juice and diluted, unsweetened fruit juices (except prune juice). Potassium-rich foods to replace potassium losses are fruits and vegetables, especially bananas, cooked broccoli, potatoes, spinach and tomatoes. Avoid fried and fatty foods if you have had an ileal resection.
Try eating small, frequent meals and avoid eating raw fruits and vegetables to limit bulk in your meals. You may want to restrict eating from four to six hours before bedtime. If you have diarrhea or bloating after trying a new food, avoid it for a few weeks before you try that food again. Any changes in bowel habits or food tolerances should be discussed with your doctor.
Medications can help to slow bowel function. Bulking agents such as Benefiber, Citracel and Fibercon may also help thicken stool. Medications such as Lomotil or Imodium are prescribed to decrease the frequency of bowel movements.
Because most foods are combined with others when eating a meal, it may be challenging for a patient to accurately identify their reaction to a specific food, and each individual may have a different reaction to the same food. A personal food journal may be helpful in identifying a relationship between the ileal pouch and its function. This may be a simple record or diary of all food and beverages consumed in meals or snacks by time-of-day and noting any reactions. This type of record can identify individual habits that may be contributing to diarrhea and lead to changes that will improve it in patients with an ileal-anal reservoir. Be sure to discuss this with
your dietitian or doctor if you have any concerns or questions.
Reprinted from the Pouch-O-Gram, Winter 2003, Vol. 8, No. 1, a newsletter published by the Department of Colorectal Surgery at the Cleveland Clinic
Return to Top Ten Commandments for the New Ostomate
There is no answer for "Why me?" but it is normal to ask the question and you need to work through the answer to this and other questions.Stomas change in size and shape the first few months after surgery. The swelling and diameter of your stoma will decrease. Check the size of your stoma with a measuring guide every pouch change until it stabilizes to its permanent size.
Each person's ostomy is different even as our own fingerprints are different.
Support and information from someone who has an ostomy can be helpful. Ask your doctor, ET or LDOA to arrange for an ostomy visitor.
Learn to manage your ostomy and don't let your ostomy manage you! It’s normal in the beginning for your ostomy to be the center of your existence, however, with time and practice, your ostomy and its care will become just a normal part of your daily life.
Fundamental management techniques can be learned and new experiences and problems that may develop must be met and managed as they occur. As you learn and practice these new skills, you will become comfortable with your ostomy care. Do not confuse accidental leakage or spillage with what is normal or to be expected. If you have problems, consult your ET.
One of the most important goals for healthy living is good nutrition. The one difference in having an ostomy and setting your nutritional goals is that you need to take information provided for the general public and adapt it to your own needs, keeping ostomy management in mind.
You are not alone! Support organizations are available to help you.
You're alive! You will get better and stronger as you recuper- ate from surgery. Give yourself time to get over the surgery, to adjust to this body change and adapt to your ostomy.
Share what you have learned with another new ostomate, with your family and friends and others. It is up to you who you tell you have an ostomy. As you grow accustomed to living with an ostomy, there will be opportunities to help others along the way. Remember your own experiences and the fear of the unknown and the helplessness until you met another who had traveled along the same road as you.
Return to Top Change of Address • Membership Renewal Form
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On the Lighter SideOstomy and Colonoscopy Humour
On my first day back to work after getting an ileo- stomy, some of my co-workers were going out to lunch. They asked if they could bring me back something, and I told them, "No thanks, I'm brown bagging it." The ones who knew about my surgery cracked up.
An IBD ostomy patient was sitting backwards on the toilet seat to empty her bag in the doorless stall of a school ladies room. In the next stall was a very young girl working on her potty training. Without a training seat, mom was trying to show her daughter how to sit and not fall in. When she fi nish ed her ordeal, the little girl walked to the next stall, tapped the ostomy lady on the back, and proudly said, "It would be easier if you turned around."
During my last sig-scope, the doctor was very talkative and the meds took off just enough. He said, "Do you wear coloured contacts, or are your eyes really that blue?" I replied, "If you can tell the colour of my eyes, I think you've gone too far."
After surgery for Crohn's, which included an ileostomy, my hospital roommate and I were exchanging stories about handling the pouch. She had had hers for over ten years, me for two days. Like many new ostomates, I was concerned about odours and what to expect. My husband came to visit and, while we were watching TV, I started to smell a not-so-pleasant gassy odour. I started checking my pouch, drains, dressings, and couldn't find any leakage. My roommate was rustling around, as well, making the same checks as I was. I asked my husband if he could smell anything bad, thinking I was imagining it or just being hyper-sensitive. That's when HE got embarrassed and admitted that HE had just passed a good cloud of gas! HE was the culprit! We made him leave the room.
The first time in my new GI’s colonoscopy facility, while lying on my side after having been administered my “drug cocktail”, I clearly remember looking up at the corner of the ugly green ceiling and saying, "Hey, wife's partner chose the colour, huh?" to the man who was standing over me holding a colonoscope.
I had assumed the position on my left side and was facing a big black monitor. I wondered what it was for, but the nurse had just given me those wonderful drugs so I didn't have much time to ask. Needless to say, I was pretty much in and out of it for the most part. The only part that really sticks in my mind was opening my eyes at some point during the procedure, seeing the monitor on, and thinking "Wow! They have the Discovery Channel!"
The above stories are actual experiences from ostomates, courtesy of Semi-Colon’s IBD and ostomy humour web site.
"We're going to take a link
out of your food chain."
Said one maple tree to the other,
"Whatta ya mean ya wanna join LDOA?"
Final Thoughts
What’s another word for "thesaurus"?
How does the guy who drives the snowplow get to work in the mornings?
If 7-11 is open 24 hours a day, 365 days a year, why are there locks on the doors?
And speaking of locks, why do they lock gas station bath- rooms? Are they afraid someone will clean them?
"I have found the best way to give advice to your children is to find out what they want and then advise them to do it." • Harry Truman
Remember when: You thought an appliance was a fridge or stove? A blockage was a football term? And a colon was a punctuation mark?
Disclaimer • This site and its contents are presented expressly for informational purposes only about London & District Ostomy Association (LDOA) and gastrointestinal and/or urinary diversions in general. In no way are any of the materials presented here meant to be a substitute for professional medical care or proper attention by a qualified physician, nor should they be construed as such. Always check with your doctor or ET if you have any questions or concerns about your condition or before starting a new program or treatment. The Webmaster and LDOA are not responsible or liable, directly or indirectly, for any form of damages whatsoever resulting from the use (or misuse) of information contained in or implied by this site.
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