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Volume 29, Number 11 September, 2002
SHORT-TERM OSTOMATE — POINT OF VIEW
By: Katy Duggan, Seattle, Via: “The Ostomist”, Greater Seattle Chapter
One day I was on vacation in New York and simply feeling constipated. The next day I was in a Seattle hospital emergency room signing a consent form for a colectomy (surgical incision and removal of bowel) and a possible ostomy.
As an RN, I took care of many a child with a colostomy and could only remember the awful skin breakdowns that many of the kids had on their abdomens. I remembered the struggles to keep the old style appliances on their fragile bodies. I was feeling scared, confused, and incompetent to take care of one on my body.
Surgery resulted in no ostomy and I was relieved. I only had a colon cancer diagnosis to deal with post-operatively. Five days later I found myself again faced with a consent form for emergency surgery for complications. This time there was no doubt that I would have an ostomy….an ileostomy. The surgeon assured me it would only be for eight to ten weeks and then it would be closed.
The assurance vanished with the first visit of the oncologist. He did not want me to have a third surgery, recover from the operation and then start chemotherapy. Now my challenge was to face nine to ten months of taking care of myself with an ileostomy. Again, I was feeling scared, confused, and incompetent to take care of one on my body.
As professionally trained as I was, I had all the same fears of those who must face living a lifetime with an ostomy. I kept telling my family, I just wanted to pay a nurse to come in each week to deal with the bag change and any problems. I wanted someone else to deal with “it”.
I had to have help for several weeks but gradually became “less scared”, not as “confused” and more “competent” as each week passed. Although, closer to the surgery date to reconnect my bowel, I have walked the road each ostomate walks. Between chemotherapy side effects and learning new skills about managing an ileostomy, I am a stronger, more competent individual.
GET THE LOWDOWN ON DIET SUPPLEMENTS
Via: The Town Karaya, So. Nevada
It’s hard enough to find accurate information on diet supplements, especially since much of the information comes from those who want to sell you their products. However, you can find some help on
http://www.supplementwatch.com. Developed by nutritionists and scientists, the site aims to provide consumers with unbiased information about supplements. You will find research findings, as well as safety and efficiency ratings.
SENSIBLE EATING
Via:
Metro Halifax News & Regina Ostomy
News
It is several months since you had your surgery and you have become adapted to your new plumbing. You have a beautiful stoma, changing your appliance is almost routine, your skin has now accepted the patch you apply and you can wear your appliance four to five days before changing. Boy, this is living again—no more pain, you can go out without worrying about bathroom locations.
You accept an invitation to a party for the first time in two years and really rejoice in being out with your friends again. You drink with freedom and down handfuls of peanuts, you wander to the table set with raw vegetables and dip and join in; the dinner is delicious, including the corn. This has been a truly good night—just like old times.
Two o’clock in the morning and you haven’t been asleep yet. There has been a persistent pain around your stoma that won’t let you sleep. And now it is increasing. You recall that you have not had much effluent in your pouch and what you had was almost plain water. By three, it is much worse and by four you are considering calling your doctor, but you decide to tough it out. You remember remedies that were mentioned. You drink some warm tea; pull your knees to your chest and rock back and forth. You drink some more and get on your hands and knees and rock.
You eat some crackers, drink, and knead your stomach. You drink some more, eat a piece of bread and get in the shower and let the warm water roll down your back. About the time you are ready to pack it in for the emergency room, things seem to ease up a bit and then you notice that your pouch is no longer empty. When you finally empty your pouch, it’s like pouring a bag of peanuts in the toilet.
You have learned a valuable lesson! You may be able to eat nuts, or popcorn, or raw vegetables, or even corn on the cob—but common sense will tell you in the future not to eat them all at the same time. Eat them in moderation and chew, chew, chew!!
HOW TO MAKES SENSE OF MEDICAL BREAK-THROUGHS
From Hope Heart Institute, Seattle, WA, Via: Tacoma WA Newsletter & S. Brevard FL, OSTOMY NEWSLETTER
Breakthrough studies on nutrition and health are announced every day. When reading or listening to a news story, it’s important to be a critical thinker. Here are some tips.
1. Single Study: As a rule, do not make radical nutrition or life-style changes based on the results of a single study. Talk to your doctor if the “news” relates to a medical condition you have. In most cases, it’s best to make changes after several highly-regarded studies have confirmed the results.
2. Conflict: If the new findings conflict with previous studies, look for a reason why. Be aware that the media loves to play up “exciting” news.
3. Quick Fix: Be wary of recommendations that promise a quick fix. If something sounds too good to be true, it probably is.
4. Headlines & Bottom Lines: Read beyond the attention-grabbing headlines. Headlines simplify complex findings. Bottom-line conclusions are usually reported at the very end of news stories.
5. Verification: Read several news reports. Your local paper, USA Today, and the New York Times each may put an entirely different spin on the same research. Look up the original journal article, if possible. You can find most article summaries on the
Medicine Database.
6. Method: Analyze how the study was done. Long-term studies that involve a lot of people are usually more reliable than quick, small studies. “Memory recall” studies are notoriously unreliable. Note that study results may not apply to you if the people studied differ in age, gender, race, locale, health habits, etc.
7. Source: Analyze the source. The best research is conducted by leading
organizations, is peer-reviewed, and is published in leading medical or
scientific journals. Note that publication in a prestigious journal does not guarantee that the
findings are definitive or conclusive.
8. Interpretation: Look for expert interpretation and commentary from
health and nutrition professionals.
9. Bias: Beware of researcher and
or funding bias. Examples: Nutrition studies financed by food
manufacturers should be taken
with a grain of salt. Beware of
health organizations that have
an underlying financial issue at
stake.
10.Specialization: Most researchers are specialists , so you’ll
have to put the whole picture
together by yourself, Example:
a cardiovascular research study
might note that one alcoholic
drink a day decreases the risk
of heart disease, and neglect to
mention that it increases the
risk of some cancers.
I’VE HAD MY POUCH SURGERY….NOW CAN I EVER HAVE A BABY?
By:
Scott A Strong, M.D., from the Cleveland Clinic’s Pouch-O-Gram
Ulcerative colitis and familial adenomatous polyposis are diseases that most commonly afflict young adults with 50,000 individuals requiring operative treatment of their disease annually. In recent years, the ileal pouch-anal anastomosis procedure (internal pouch) has emerged as the operation of choice for many of these individuals, even though some patients are understandably concerned whether the ileal pouch operation will affect intimacy with their partner or the ability to have a family.
The majority of men and women report an improved sexual life following restorative proctocolectomy because of better overall health. However, approximately 2% of men will have difficulties with sexual dysfunction while nearly 25% of women complain of painful intercourse, although this discomfort is usually improved over the pain experienced preoperatively. We also understand that most women with an ileal pouch-anal anastomosis can successfully conceive, yet the infertility rate among these patients is nearly tripled. Women who do become pregnant will often complain of increased stool frequency and worsened control over bowel motions as the pregnancy progresses and the enlarging uterus compresses the ileal pouch. These symptoms are usually tolerable and bowel habits typically return to normal within three months after delivery.
Lately, many surgeons and obstetricians share the patients’ concern about which mode of delivery should be utilized. While vaginal delivery would possibly benefit the health of the infant or mother, cesarean section might avoid irreparable damage to the ileal pouch, the sphincter muscles, or the nerves that control these muscles. Fortunately, studies from three large centers, including the Cleveland Clinic Foundation, report that bowel function is not significantly altered by the mode of delivery. We are unsure, however, if these short-term similarities will continue to be comparable decades later when delayed effort
of vaginal delivery combines with other detrimental factors to cause worsened bowel function. Therefore, we generally suggest delivery by cesarean section unless this approach introduces excessive risk to the infant or mother.
THE RITUALIZATION OF APPLIANCE CARE
Via: Metro
Washington By-Pass, the Oklahoma City Ostomy News & the Cleveland Ostomy News
A person who has had an ileostomy, urinary diversion or colostomy for a long time usually has experienced occasional problems with the stoma, skin or equipment.
The ostomate has sought help from the ET nurse, physicians, friends and others. As advice was given, the ostomate heeded each suggestion into the routine for changing his pouching system.
Changing the pouching system took more and more time. I have observed persons using several different kinds of soaps or disinfectants to cleanse the skin, applying skin sealants using several skin barriers and then affixing the pouch over all this.
Often the result of this is that the person will take hours to change the pouching system and care for the stoma and skin.
Periodic evaluation of the changing procedure should be done. At each step, the ostomate should ask himself: “what am I accomplishing doing this step? Can I eliminate it?”
The pouching system should guarantee freedom from leakage of stool or urine; maintain normal peristomal skin, be odor proof, and be invisible when the person is dressed. The procedure should be uncomplicated with as few steps as possible. No step or use of a product should duplicate another.
Care of the stoma, skin and changing the equipment should take no more than 15-20 minutes. The stoma should accommodate the lifestyle of the person who has it, and take as little time as possible.
BEING THE MOTHER OF A CHILD WHO HAS AN OSTOMY
By: Dawn Steeves, Via: Regina Ostomy News
Kale was born in 1987 with medical problems that ended up with him wearing an ostomy pouch. He was born in Humboldt Hospital, then taken by ambulance to the Royal University Hospital in Saskatoon. Dr. Rossi talked to me about his surgery. I trusted him to do what he thought was best for Kale. Kale was only a few years old when he had surgery. When I saw him afterwards, I almost fainted. There was this little baby boy, great big eyes, long eyelashes and a “pouch”. I said to the doctor, “What am I supposed to do with that?” Thank goodness for Teri and Phyllis (ET nurses) and NorDon Drugs as their help was greatly appreciated.
Kale has had many, many surgeries in his short life. We moved to Alberta for about 6 years and then we moved back in 1996. Teri contacted us about the ostomy camp that Kale could attend. I was very leery about it. He really wanted to go, but I wasn’t sure. Who would look after him? Who would remind him when to empty his pouch? What would he do without me to help him?
Well, I tried to phone him after he was there a day or so. They told me he was out wall climbing. I almost fainted. They asked me if it was an emergency. I said I just wanted to talk to him. They told me he was fine, he was having a great time, he was all right, to relax, and I would see him in a couple of days. I wasn’t sure I liked that, but I didn’t call again.
I would like to thank the Ostomy Association for making it possible for Kale to attend camp, because without you, he simply could not go. My family cannot really afford to send him. I know he has gained a lot from camp. (Editor’s note: Both the United Ostomy Association of Canada and the United Ostomy Association, Inc. (U.S.A.) sponsor camps for ostomy children & youth annually. In addition UOA Inc. has a network for “Parents of Ostomy Children.”
HELPFUL HINTS FROM EVERYWHERE
If the stomahesive paste (karaya paste) becomes hard and will not push through the end of the tube...take a mug/glass and fill half way with water. Then place the mug/glass in your microwave for 45 seconds heating the water. Remove from the microwave and place the tube, cap down in the water, let it set for a few minutes, then remove and dry it off. Your paste is ready to be pushed out of the tube.
Vitamins should be taken on a full stomach. Otherwise, they irritate the lining of the stomach and produce the sensation of feeling hungry.
Try strong-brewed tea before the purchase of a “diuretic”. Hot tea twice a day will wake up your sluggish kidneys.
Tomato juice is lower in cost per cup while providing as much sodium and 5 times more potassium as a low cost alternative to Gatorade. Orange juice is another alternative providing the same amount of sodium and 15 times the amount of potassium. Tea, however, contains approximately the same amount of potassium as Gatorade, but only negligible amounts of sodium.
Some people find a large teaspoon of bulk gelatin dissolved in water or lemon juice once a day will firm up a loose stool.
If you are taking calcium, medical experts advise taking calcium at night to obtain maximum benefits. During the night, the body depletes calcium in the bones to maintain normal blood levels.
Eating Rice Krispies can help slow down the amount of stool, and is a great breakfast choice with a small amount of milk or eaten dry.
Emotional pressures and over-all fatigue can cause bowel upsets, especially when traveling. Do not allow yourself to become over tired.
Don’t be afraid to shower without your appliance. Soap cannot hurt the stoma. Just remember to rinse well.
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