Ostomy Association of South Texas www.ostomysouthtx.org Support Groups Meeting The Needs of All Ostomates OCTOBER 2010 ~~~~~MEETINGS~~~~~ American Cancer Society 8115 Data Point Drive Last Monday of the month @7:00 pm Contact: Pres. Jan Clark, RN, WOCN 210 734 7544 THIS MONTH INSTALLATION AND RECOGNITION OF NEW OFFICERS Karen Bush, ET Nurse —GOTTA ITCH ? Karen tells about Peristomal rashes and itches ICE CREAM AND CAKE ~~Northeast Baptist Hospital Off 410 @ Starcrest~~ Conversations With Ostomates About Their Concerns Shanna Fraser, RN, ET 210-355-6894 rd 3 Sunday of the month @ 3:00 pm ~~McKenna Events Center New Braunfels, TX~~ 3rd Thursday of the month Cindy Muench, RN 830-606-9111 ext 3359 *****Members will be notified of date and time for future meetings***** ~~Peterson Regional Medical Hospital~~ Kerrville, Texas Molly McCoy, RN, ET 830 258 7891 2nd Sunday of the month @ 3:00PM OSTOMY ASSOCIATION OF SOUTH TEXAS holds its meetings and produce this newsletter under the kind sponsorship of the American Cancer Society. THE PREZ SEZ What you missed at the last meeting Hollister was scheduled, but an illness in the family kept our representative from attending. He canceled in time for a dif- What a great honor to be leading ferent program to be put together. It was presented by Jan this support group for the upcoming Clark and was called “getting to know you.” year! The upcoming installation of offi- All attendees were given questionnaires to fill out. cers should be a time of reflection for our Questions ranged from what kind of ostomy do you have? to organization and a time for renewal of your favorite city/vacation spot, favorite food, best achieve- individual and collective commitment. ment and what Santa should bring? No names on the question- In September 1970, Ralph Kaye, Jack Burkett, Earle Benson naires. The questionnaires were passed around and read and and Larry Rosow met with nurse Ester Munoz to organize a best guesses were made as to who the mystery person was. San Antonio chapter of the United Ostomy Association, which Some were surprises. And some were easy to guess. was founded in 1962. A letter was prepared and delivered to Who knew that Bill Sohm was Chief Plumbing Inspector for ostomy surgeons to be shared with their patients. The first year the City of San Antonio before retirement? Or that Richard the newsletter was one page, with paid advertisements on the Hannert wants a new motorcycle for Christmas? If you take back and was mailed for 8 cents. Jack Burkett was the first Tex Farnsworth out to eat, buy him a steak or baby back ribs! president. When Burkett moved to Houston in 1971, Ralph Our very own Velma Murray was the first woman in San Anto- Kaye took over. That year, the first woman, Thelma Schockner, nio to be a district governor for Toastmasters International! joined the group in 1971. Dues were $5.00 per year. One of Gus and Virginia Garrity both listed “Gone With the Wind” as the chapter goals was to have a full time ET Nurse. By 1973 their favorite movie. Lou Wilson likes all food except Mexi- after much lobbying by Ralph Kaye, Larry Rosow and Dr. Ar- can! Diane Armstead wants ice cream when watching “Pretty nold Walder, Methodist Hospital employed the first ET Nurse Woman.” Did you know Henry Martin used to take care of in San Antonio, Nora Powers. chimpanzees? Art Rodriguez likes to vacation in Port Aransas Ralph Kaye enjoyed writing the newsletter, planning pro- and eat crab legs! grams and making visits. It was his therapy according to his Come to a meeting and visit. You may be sitting next to a per- wife. After a second bout with cancer he passed away. To son who made history, has a hobby like yours, or can tell you honor his work the group changed its name to the Ralph Kaye where to get the best steak in town! We are more than our Chapter. Past presidents include Marie Snocker, Velma ostomies, but that is what brings us together, to get to know Murray and now Diane Armstead. one another! October 2005 our group re-organized, incorporated and be- came a non-profit group and renamed itself the Ostomy Asso- The good doctor was performing rounds at the ciation of South Texas for better recognition. We continue our hospital one morning and while checking up on a association with the re-organized United Ostomy Associations man he asked . .' So how's your breakfast this of America. morning?' ' It's very good except for the Kentucky This is our 40th year of fulfilling our mission. New and estab- Jelly. I can't seem to get used to the taste.'. . . Bob lished members mingle. Our histories and experiences join. We replied. The doctor then asked to see the jelly and are fortunate for the members who attend our meetings, and for Bob produced a foil packet labeled 'KY Jelly. those who can’t attend meetings but continue their membership October is the tenth month of the year in the Gregorian Calen- giving us strength in numbers. We all are making a renewed dar and one of seven Gregorian months with a length of 31 days. commitment each time we attend a meeting or send in dues. The eighth month in the old Roman calendar, October retained We are all needed to make our group successful and accom- its name (from the Latin "octo" meaning "eight") after July and plish our mission. August, after Julius and Augustus Caesar respectively, when the Jan Clark calendar was originally created by the Romans. October is com- Thanks to Ann Strey for a compilation of our history. monly associated with the season of autumn in the Northern hemisphere and spring in the Southern hemisphere, where it is From the Editors Corner the seasonal equivalent to April in the Northern hemisphere and vice versa. In common years January starts on the same day of Medical, Treatment, or Tech- the week as October, but no other month starts on the same day nical items contained in this newsletter are not of the week as October in leap years. October ends on the same intended to be the last and final word. Any medical day of the week as February every year and January in common or technical information is included as information to pique years only. October's birthstone is the opal. The opal is thought someone’s memory or help recognize a situation present with to have the power to predict illness. This is because the opal someone’s family or friend. Remember, the final word on medi- responds to heat. Sickness increases body temperature before cal or ostomy conditions will be with your doctor and/or your signs of illness appear. The increased body heat causes the opal E.T. Nurse. to lose its shine, leaving it dull and lacking If you have any information you think our membership might color. It is also said that be interested in, such as a news article, a publication, a good rec- the opal will crack if it is ipe, an incident or a personal experience please let me know. worn by someone who Contact me via e-mail at: Rpittenger@satx.rr.com or "snail was not born in October. 2 mail", Ralph Pittenger---7626 Stagecoach Dr..--- It’s birth flower is the San Antonio, Tx---78227-3428. Phone 210 674 0295 calendula New Ostomates been blending all his food since he had left the hospital. No by Mark Shaffer, via Hemet-San Jacinto, CA; wonder he had been too weak to attend meetings. How could Green Bay (WI) Ostomy Support Group; this possibly have happened? and North Central OK Ostomy Outlook This is the explanation. When John had left the hospital, One of the most daunting tasks I faced as a new ostomate he remembered hearing them say: “Just keep on doing was returning to the society of people outside my what you’re doing.” And because he had recovered so immediate family. Insecurity about the reliability of my well in hospital, they discharged him before he had moved on appliance, post-operative pain, a sense of being radically to solid food. So John felt that he had to keep on eating mushy different, and a lack of appropriate clothing all contributed food, which he hated. He was slowly starving himself. to a feeling of isolation. It was a delight to see John fill his plate with real food and When I tried to see old friends, I would catch them chow down. And his wife was so pleased she no longer looking me over to see how I’d changed. Though I later had to prepare a special meal for him. Their special realized that this was natural, it was quite disconcerting at Christmas gift was a return to a normal life again. And first. It made me feel diminished somehow. When I that is what our ostomy support group is all about. expressed these feelings to my UOAA visitor, he encouraged me to go to the next ostomy association meeting. (“Encourage” doesn‘t quite tell the story; he insisted, going so far as to pick me up and take me there.) At that first meeting, I found people with the same (Ed note: Rather long but good new information concerning new condition (and many with worse ones—which made it cancer diagnosis) hard for me to continue wallowing in self-pity). To my surprise, these people looked and acted like everyone else I knew. They were living normal lives, working, raising DNA Test May Speed Colon Cancer Diagnosis children, falling in and out of love just like the rest of the A new generation of DNA tests for colon cancer seems world did. If there was a difference, it seemed to be that likely to improve the detection both of cancers and of the pre- they enjoyed life more than most. And, they were all very cancerous polyps that precede them. The tests, if validated, nice people…every one of them. They were more than could reduce the burden of disease substantially by detecting willing to share their experiences, discuss any topic I tumors at an early stage, including those not picked up by a chose to raise and suggest practical solutions to practical colonoscopy. Colorectal cancers tend to grow slowly and are problems. They gave me phone numbers and told me I easily removed if caught early. But many people over 50 do not could call them anytime. Some of them remain friends comply with the recommendation to have a colonoscopy — a today. I still had adjustment problems, large and small, but time-consuming procedure in which a tube is threaded up the I knew I could solve them and I knew there were people intestine — and even colonoscopies do not catch everything. who would help me do so. Colorectal cancer has become the second most common cancer If I were asked to give only one piece of advice to a new in the United States; each year it causes more than ostomate, it would be this: Go to a Meeting! That one 50,000deaths and costs about $14 billion to treat. action, almost forced on me, made all the difference. Colon tumors provide considerable evidence of their pres- ence by shedding blood and cells that are detectable in the stool. Tests for blood have reduced deaths from colorectal can- Who Will Eat All this Food? cer only modestly, because they are not very sensitive to pre- Ed Tummers; via Metro Halifax (NS) News;and cancerous polyps, the stage at which cancer is best prevented. North Central OK Ostomy Outlook Researchers turned to measuring mutations in DNA after Dr. A few years ago, I visited a gentleman in hospital after his Bert Vogelstein of Johns Hopkins University discovered the ostomy surgery. He was recovering very well and was series of mutations by which a colon polyp advances to full excited about going home. As he left, the hospital staff cancer. But no single mutation predicts a patient’s risk, and the said to him: “John, you are doing great. Just keep on doing mutation tests, though more accurate than the blood tests, have what you’re doing.” not been a decisive improvement. Two months later, I called John to invite him to our By 2004 it was clear that looking for the Vogelstein muta- monthly meeting. His wife answered the phone and said tions was “neat biology but not a home run,” said Dr. David that John had no energy and was too weak to attend. Ransohoff, an expert on colon cancer screening at the Univer- Repeated invitations got the same response. Finally, I sity of North Carolina. convinced John and his wife to attend the Christmas A new generation of tests being developed depends on a dif- auction and banquet. ferent process in cancer cells. All cells switch off the genes We greeted John and his wife at the door and introduced they do not need by attaching small chemicals them to a few other members. Seeing all the delicious called methyl groups to certain sites along their DNA. In can- food spread out on the banquet tables immediately caught cer cells, there is generally less methylation than their attention. But, they asked, where was the food for the usual, except for certain regions of DNA where ostomates? What would John eat? the methylation process is taken to excess, per- We innocently answered that John could eat whatever he 3 haps because wanted. What we heard next totally shocked us. John had (con’t page 4, Test) naturally with age. But the DNA methylation tests are promising in principle, he (Cont’d Test) said, and it seems feasible for Exact Sciences to get a sensitivity the cells need to shut down tumor suppressor genes. These of better than 90 percent and a false positive rate of only 5 to 10 and other genes are highly methylated icolon tumors and percent. “We can tolerate 5 to 10 percent false positives because other kinds of cancer. those people will just get colonoscopies,” he said. Exact Sciences, a company based in Madison, Wis., is For cancers above the colon, there are many enzymes that developing a colon cancer test based on highly methylated digest DNA, so whether such cancers can be detected efficiently DNA. Its researchers reported last month that by testing for can be answered only with experiments, Dr. Vogelstein said. methylated DNA at four markers, pieces of DNA drawn And false positives would be more of a problem, since for these from specific genes, they could detect colon tumors and cancers there is no easy verification method like colonoscopy. polyps, distinguishing them from normal tissue with 100 “That’s when these false positives really start to be the devil,” percent sensitivity and with no false positives. he said. The tests of methylated DNA were performed directly on Dr. Ransohoff said the Exact Sciences test was still at a pre- tumors and are expected to be less accurate in the real liminary point. “This is neat and it’s promising,” he said. “But world, in which they would have to work in stool samples. we’ve been down this road before and we need to be hopeful Almost all of the DNA in stool is from bacteria, and the without being carried away.” methylated DNA is a fraction of the 0.01 percent that is human DNA. Still, Kevin T. Conroy, chief executive of Exact Sciences, said he expected that the four-marker test, when applied to A Sign of the Times stool samples, would detect at least half of all precancerous When I bought my Blackberry I thought about the 30-year polyps and 85 percent of actual cancers. Results of a trial business I ran with 1800 employees, all without a cell now under way in 1,600 patients will be reported in Octo- phone that plays music, takes videos, pictures and ber, he said. communicates with Facebook and Twitter. I signed up The test would cost less than $300, and samples could be under duress for Twitter and Facebook, so my seven kids, collected at home. Patients would be advised to take the test their spouses, 13 grandkids and 2 great grand kids could every three years. People with a positive result would then communicate with me in the modern way. I figured I could have a colonoscopy to verify and remove handle something as simple as Twitter with only 140 any polyps, with the result that colono- characters of space. scopies could be focused on high-risk pa- That was before one of my grandkids hooked me up for tients instead of the popula- tion at large. Tweeter, Tweetree, Twhirl, Twitterfon, Tweetie and Exact Sciences’ test is based on Twittererific Tweetdeck, Twitpix and something that sends work by Dr. Vogelstein, Dr. Sanford every message to my cell phone and every other program Markowitz at Case Western Reserve Uni- within the texting world. versity and Dr. David A. Ahlquist of the Mayo Clinic. Dr. My phone was beeping every three minutes with the Ahlquist, who is a scientific adviser to the company, identi- details of everything except the bowel movements of the fied some of the highly methylated genes the company is entire next generation. I am not ready to live like this. I testing as markers for colon cancer. keep my cell phone in the garage in my golf bag. Dr. Ahlquist said that if the test worked as well as hoped The kids bought me a GPS for my last birthday because on stool samples, “this will be the first noninvasive test that they say I get lost every now and then going over to the will reliably detect malignant lesions.” Cervical cancer has grocery store or library. I keep that in a box under my tool been virtually eliminated by the Pap test, he said, and “we bench with the Blue tooth [it's red] phone I am supposed feel that colon cancer could be eliminated to the same ex- to use when I drive. I wore it once and was standing in tent.” line at Barnes and Noble talking to my wife and everyone The four-marker test can pick up a kind of precancerous in the nearest 50 yards was glaring at me. I had to take tissue called a serrated polyp which is often missed by my hearing aid out to use it, and I got a little loud. colonoscopies, Dr. Ahlquist said. It also ignores most in- The GPS looked pretty smart on my dash board, but the nocuous small polyps. lady inside that gadget was the most annoying, rudest Using different sets of four markers, other kinds of cancer person I had run into in a long time. Every 10 minutes, can be detected. “We can detect all of the cancers above the she would sarcastically say, "Re-calc-ul-ating." You colon — pancreas, esophagus, stomach, bile duct,” Dr. would think that she could be nicer. It was like she could Ahlquist said. Thus in principle, all the cancers of the gas- barely tolerate me. She would let go with a deep sigh and trointestinal tract, which account for nearly a quarter of all then tell me to make a U-turn at the next light. Then if I cancer deaths in the United States, should be detectable made a right turn instead…well, it was not a good from stool samples. relationship. Dr. Vogelstein said tests for DNA mutations would be When I get really lost now, I call my wife and tell her the better in theory than tests for DNA methylation because name of the cross streets and while she is starting to “mutations are entirely specific and they are what is driving develop the same tone as Gypsy, the GPS lady, at least she loves me. (Cont’d pg 5 Sign) 4 the tumor”; the methylation is less causative and increases (Cont’d -- Sign) individuals and organizations in the United States and ships them to developing countries where ostomates do To be perfectly frank, I am still trying to learn how to use not have access to these vital supplies. The donated prod- the cordless phones in our house. We have had them for 4 ucts are sent to the FOW-USA warehouse space in the years, but I still haven't figured out how I can lose three Louisville, KY, area at the donor’s own expense. A team phones all at once and have run around digging under chair cush- of volunteers gathers regularly at the warehouse to unpack the ions and checking bathrooms and the dirty laundry baskets when supplies, organize them, match the donations with needs, and the phone rings. repack them for shipment overseas. A volunteer communi- The world is just getting too complex for me. They even mess cates with organizations in the receiving country, such as hos- me up every time I go to the grocery store. You would think they pitals, clinics, and ostomy associations, to identify product could settle on something themselves but this sudden "Paper or needs and ensure that the supplies will be distributed free of Plastic?" every time I check out just knocks me for a loop. I charge to needy ostomates. From its founding in 1986 through bought some of those cloth reusable bags to avoid looking con- January 2007, FOW-USA has shipped over 220,000 pounds fused, but I never remember to take them in with me. Now I toss of ostomy supplies to 60 countries worldwide. The value of it back to them. When they ask me, "Paper or these supplies is estimated at over $11,000,000. FOW-USA Plastic?" I just say, "Doesn't matter to me. I am bi-sacksual." also funds memberships in the World Council for En- Then it's their turn to stare at me. I was recently asked if I terostomal Therapists (ETs)for people who care for tweet. I answered, No, but I do toot a lot. ostomates in developing countries, and has pur- chased video cameras for clinics in Zimbabwe and Pakistan to help experienced professionals teach Antacid Users Beware both health workers and ostomates about ostomy by Elizabeth Smoots, M.D. care. Almost everyone has indigestion occasionally, and it is probably all right to take an antacid pill now and then, but many Things NOT To Do If You're An Ostomate health authorities warn that taking antacids regularly may not be via Chicago North Suburban and Halifax (NS) News wise, especially for ostomates. Here’s why: Magnesium hydrox- ide causes diarrhea and reduced absorption of vitamins and min- This is a collection of items compiled from the Internet and erals. Aluminum hydroxide causes constipation, reduced phos- many other sources. It is just a reminder that we should not phate levels leading to fatigue, poor appetite and bone loss. It also take ourselves too seriously. So, Don’t:drop a clip in the toi- contains aluminum which has been linked to Alzheimer’s disease. let. It is a prudent idea to always carry a spare clip. Stand up Calcium carbonate may cause acid rebound where, when the too quickly when the clip is caught on the edge of the toilet antacid wears off, stomach acid suddenly shoots up. It may also seat. The clip will lift the seat and you feel like a fish caught on cause constipation, a potential disturbance in the body’s calcium the end of a line This is especially a problem for a woman. and phosphate levels called milk-alkali syndrome, which in turn Imagine being at someone's home and dropping the toilet seat may lead to nausea, headache, weakness and kidney problems. loudly just before you leave the bathroom. Everyone wonders All antacids may reduce absorption of certain medications such as iron, digitalis and tetracycline. Many antacids contain lots of why a woman would be dropping a toilet seat. When drying salt, which can elevate blood pressure. your appliance with a hair dryer use the cool setting only. Plas- tic melts. Don’t have your dog jump on you when your pouch is full. The dog's nails will puncture the pouch Don’t Drink Power Ade, Mountain Blast or Gatorade Blue Bolt before a doctor visit. It turns your output bright green. This is especially Accolades and Thank You true if you have an ileostomy. All food dye turns your stool the Accolades to —Shanna Fraser who received the WOCN Of the color of the dye, temporarily. It will surprise you the first time Year Award for the South Central Region, which included it happens. This includes Blue Hawaiians or red beets. Beets Texas, Oklahoma, Arkansas, Mississippi and Louisana. Shanna make you look like you are bleeding to death. Beer may blow is employed with SAMMC (Brooke Army Med Center) and up your pouch with gas. This may be helpful when you need a works with our group at NE. Baptist Hospital. flotation device. Don’t accidentally lean against an oven door, Thank You to —Jalynn, (Shanna’s Daughter) Diane Armstead, barbecue grill or fireplace. The pouch melts quickly. Don’t Bill Fuller and Jan Clark who packed our excess supplies to be put underarm type deodorants around the pouch or barrier. It is shipped to Friends of Ostomates Worldwide.(FOW). In Louis- made of either plastic or a latex material and will dissolve it. If ville, Kentucky. (See separate article) you want to use some type of odor control--although modern pouches are odor proof--use mild mouthwash or one of the commercially made products that will not harm your stoma or Friends of Ostomates World Wide (FOW) your pouch. Many chemicals can damage an appliance. The Friends of Ostomates Worldwide-USA is a volunteer-run, non-profit organization providing ostomy supplies and educa- tional materials to ostomates in need around the world. Through The 50-50-90 rule: Anytime you have a 50-50 chance of getting something right, there's a 5 Project SHARE (Sending Help and Rehabilitation Everywhere) 90% probability you'll get it wrong. FOW-USA collects new, surplus ostomy supplies from generous This Month’s Holiday Recipe SALMON BALL 1 (15-ounce) can red salmon and bones and flake. In small 1 (8-ounce) package cream mixing bowl, cream the cream cheese cheese, lemon juice, onion, 2 tablespoons lemon juice horseradish, salt, Worcester- 3 tablespoons grated onion shire sauce, cayenne pepper 2 tablespoons horseradish and liquid smoke. 1/2 teaspoon salt Blend in salmon and salt. Dash of Worcestershire sauce Form into 1 or 2 balls, then Dash of cayenne pepper roll in a mixture of pecans and 1/2 teaspoon liquid smoke parsley. Chill. Serve with your 1/2 cup chopped pecans favorite crackers. 3 tablespoons minced parsley Makes 1-2 balls. Crackers, for serving Drain salmon, remove skin Source: 1983 Cookbook OFFICERS President Jan Clark , RN, WOCN (210) 684-2775 Vice President Art Rodriguez (Programs) (210) 403 3226 Treasurer Velma Murray (210) 641 5183 Secretary Joan Wilson (210) 479-6926 BOARD OF DIRECTORS Newsletter Editor Ralph Pittenger (210) 674-0295 Patient Services Cecilia Gutierrez (210) 434 7303 Director Bill Fuller (210) 342 6995 COMMITTEES Newsletter Distribution Danny Vargas (210) 521-3501 Membership Sign In Bill & Hattie Sahm (210) 333-4792 Northeast Satellite Shanna Fraser, RN, ET (210) 355-6894 Kerrville Molly McCoy, RN, ET (830) 258-7891 New Braunfels Cindi Muench, RN (830)606-9111 x 3359 MEDICAL ADVISORS Mary Wilson, RN, ET, Medical Advisor (210) 724-4510 MEMBERSHIP APPLICATION Note: Just your name for renewals. NAME _________________________________ BIRTHDAY __________ ADDRESS________________________ ______CITY,STATE & ZIP_____________________________ PHONE___________________ E-MAIL ADDRESS _______________________ Newsletter VIA E-mail (Circle one) YES NO Gender M F DATE OF SURGERY______ CIRCLE ONE: COLOSTOMY ILEOSTOMY UROSTOMY OTHER________________________ Please send completed application with payment of $9.00 to: Ostomy Association of South Texas, 8115 Datapoint Drive, San Antonio, Tx 78229 6 You are welcome to pay your dues at the monthly meeting. The newsletter is included in the cost of membership.
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