In this Issue
What is the UOAA?
The United Ostomy Associations of America is a national network for bowel and urinary diversion support groups in America that has been organized to fill the void left by the dissolution of UOA. It is a non-profit organization, managed by volunteers with the cooperation and utilization of outside professional help when required.
What does the UOAA hope to accomplish?
The goal of UOAA is to provide a non-profit association that will serve to unify and strengthen the support groups in America, those former UOA chapters and other non-UOA groups that are organized for the benefit of people who have or will have intestinal or urinary diversions and for their caregivers.
Who can join UOAA?
There will not be individual memberships only Chapter memberships. Membership in UOAA is open to any former UOA Chapter or support group.
What are some of the services that UOAA will provide?
UOAA will receive income in the following ways:
Marvin Bush son of former
president George W. Bush was born in 1956 in the oil boomtown of Midland. Marvin
worked primarily in mergers and acquisitions and investment management. In 1985,
Bush's life changed forever. At odd times, he found himself doubled over in
pain; blood began appearing in the toilet. An active 29-year-old, by then married
to college sweetheart Margaret Conway Molster, Marvin thought the pain might
be an ulcer, or even hemorrhoids. It turned out to be ulcerative colitis. Almost
a quarter of a million Americans suffer from the disease, and for 25 percent
of them, the only remedy is major surgery. Bush was part of that 25 percent.
Telling his mother he would be home the next day, Bush checked into Georgetown
University Hospital and didn't emerge for five weeks. His entire large intestine
was removed, and he now wears an external ostomy pouch, which collects waste
and fits under his trousers. In 1991, the CCFA named Marvin Bush as its spokesman,
hoping he could use his natural speaking ability and his family's public profile
to raise awareness of the disease and, perhaps more important, give it a public
face. "Walking around with a pouch around your waist is not an easy thing to
talk about," says Marvin. "And yet, when you think about this insidious disease
that really robs a lot of people of their pride, it really was not that challenging
to visit hospitals or see kids or call as many people as I can. In a way, it's
been part of the healing process for me.Ē
OSTOMY WORLD GOES HIGH-TECH!
Hi Everyone, I'm very excited about the upcoming November meeting; we're going into "cyberspace". Stephanie, our medical advisor, and Ed Withers, our webmaster extraordinaire, are going to offer a web based presentation about surfing the net for ostomy items of interest.
If you've ever been frustrated when you can't logon to a particular website or can't navigate through the 'tech talk' then this meeting is for you. Or if you just want an easy reference to an ostomy site then check us out. They will be presenting the different sites that you can use for particular ostomy/health issues you may have. And they will also show you how to access chatrooms so you can share your ideas with ostomates around the country. So I hope each of you has marked your calendars for Tuesday, November 1st, at 7:30 pm to join us for an interesting and informative gathering to explore our ostomy world.
Thank you for a great October meeting. And thanks again to Jeff and Becky for the wonderful refreshments. I continue to be very thankful for our attendance each month. You are a very caring and concerned group of members who continue to live by the fact that there is a wonderful life with an ostomy.
Special thanks to Teri B. for her presentation. Very informative and always educational about new products. I hope everyone had a chance to talk with her after the meeting.
Thank you for all you do!
Yours in service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dan
Remember to allow 1/8" - 1/16" between the edge of the stoma and the opening in the wafer (skin barrier). Too large an opening may expose skin to stool or urine content. Too small an opening may cause lacerations due to rubbing of the pouch or skin barrier.
Lengthy sitting in one place can force the pouch contents upward around the stoma and cause leakage. Getting up occasionally will help.
Put toilet paper in the toilet bowl before emptying your pouch to prevent splashing.
This month all suggestions seem to be about handling the Stomahesive paste, and thatís a good thing, because getting it to go where you want it when you want it - and not everywhere else - can be a challenge! Do you have other ideas? Share them! The By-Pass offers us a wonderful vehicle to share our ostomy tricks with the rest of the community. If you have an idea youíd like to have included, please contact Jennifer Higdon or Dan Wiley. If you find suggestions posted here helpful, be sure to tell the person who contributed them.
Wet your finger tips with just a little bit of water to make the handling of Stomahesive paste, Eakin seals, etc., much more manageable when changing your pouch. Dan Wiley
After changing your pouch and washing your hands, do you have trouble removing the sticky goo from your hands? If so, wash and then put lotion on your hands. The lotion makes them no longer sticky. Jennifer Higdon
That Stomahesive paste is so hard to deal with. You canít do anything with it unless itís been warmed, and the usual suggestion is to put the tube in a glass of warm water while you clean the stoma. I have found this erodes the tube, so when I get my supplies together for a wafer change, I put the tube under my arm, in the armpit, and hold it there until itís time to use it. By then itís warm and ready for application. Anke Gassen
We Need Your Contributions! We hope that Member Suggestions will be a regular feature of the By-Pass, but we cannot do it without your input! If you have an idea, a special way of handling your ostomy that others may find helpful as well, please contact us! Call or send email to Dan Wiley or Jennifer Higdon, and well be sure to include your ideas in the next edition.
By I. Emre Gorgun, M.D., and Feza H. Remzi, M.D. The Cleveland Clinic Department of Colorectal Surgery
In a majority of individuals, pelvic pouch surgery is the procedure of choice to maintain bowel continuity after removal of diseased colon and rectum for ulcerative colitis or familial adenomatous polyposis. The pouch preserves the normal route of defecation and usually has good functional results. Pouch failure, though uncommon after this operation, is a condition that merits discussion for our patients. Pouch failure, or pouch loss, is defined as unsuccessful medical or surgical attempts at pouch salvage that lead to the construction of a permanent stoma with or without pouch excision (surgical removal of the pouch).
Frequency of Pouch Failure
In some series in the medical literature, the risk of pouch failure at 10 years has been estimated at 9 percent. However, in a large series from our institution consisting of 1,911 pelvic pouch patients, the rate of pouch failure was 3 percent at six yearsí follow-up. Overall, since 1990, the pouch failure rate at the Cleveland Clinic Department of Colorectal Surgery stands at 3 percent in more than 2000 patients with up to 13 years follow-up. The most frequent causes of failure are pelvic infections, severe pouchitis, high stool volume, Crohnís disease, and uncontrollable fecal incontinence.
Studying the Risks Associated with Pouch Failure
We recently conducted a study to show the risk factors associated with pouch failure. We found eight main factors that were related to pouch failure: pathologic diagnosis (Crohnís disease versus non-Crohnís disease), patientís co-morbidities (other chronic illnesses), prior anal diseases, diminished anal sphincter manometry measurements, separation of the pouch connection, outflow stricture, pelvic infection, and perineal fistula (abnormal passageway) formation.
Repeat Pouch Surgery
Pouch salvage, or repeat pouch surgery, is usually performed in an attempt to improve pouch function, maintain fecal continence and avoid pouch failure. Repeat pouch surgery is defined as an operation for a malfunctioning pouch using an abdominal approach with complete or partial reconstruction of the pouch. Repeat surgery can be challenging and has not been popular among surgeons because of concerns about difficulties in re-operation. For this reason, it is important that patients considering pouch revision surgery choose an institution that has experience with this procedure.
Our departmentís experience with repeat pouch surgery has been published and the reported overall pouch salvage success rate was 86 percent. The success rate increased to 96 percent in patients with ulcerative colitis but fell to 60 percent in patients with Crohnís disease. A high rate of seepage and pad use was observed in the Crohnís patients. However, 90 percent of the patients stated that they would still choose to have surgery again.
from Pouch-O-Gram (fall/winter 2004), a publication provided by the Department of Colorectal Surgery at The Cleveland Clinic to help people deal with issues associated with the pelvic pouch.
Thanks in part to a federal law, as of September 1, 2005, all residents of the US can receive their credit report for free from www.annualcreditreport.com. AnnualCreditReport.com is a centralized service for consumers to request annual credit reports. It was created by the three nationwide consumer credit reporting companies, Equifax, Experian and TransUnion.
AnnualCreditReport.com processes requests for free credit file disclosures (commonly called credit reports). Under the Fair and Accurate Credit Transactions Act (FACT Act) consumers can request and obtain a free credit report once every 12 months from each of the three nationwide consumer credit reporting companies. An individual can either pull all 3 reports at once, or spread it out and pull 3 reports over a year's time. AnnualCreditReport.com provides consumers with the secure means to do so. Keep in mind that when pulling reports from the 3 different reporting companies, the information contained within them may differ. This is normal, as some banks, credit cards, etc. only report to one or two agencies instead of all three.
The three nationwide consumer credit reporting companies have always encouraged consumers to regularly review their credit reports. By viewing your credit report, you may find errors that you can have corrected, you might find out that you have a balance due on something you forgot about, and you also have a better chance of seeing if you are a victim of identity theft. AnnualCreditReport.com offers consumers a fast and convenient way to request, view and print their credit reports in a secure Internet environment. It also provides options to request reports by telephone and by mail. Please note that by receiving your credit report, it does not include your credit score. This can be purchased from Equifax, Experian or TransUnion for a fee ranging from $8 to $20.
AnnualCreditReport.com is the only service authorized by Equifax, Experian and TransUnion for this purpose. Please note that, as a security precaution, consumers should never provide their personal information to any other company or person in connection with requesting free annual credit reports under the FACT Act. AnnualCreditReport.com will not approach consumers via email, telemarketing or direct mail solicitations.
After enjoying delicious refreshments provided by Jeff and Becky Burcham, Dan Wiley, President, opened the meeting at 7:45 PM and welcomed the 32+ members and guests. He thanked Ruth Rhodes and Jennifer Higdon for their ďlabor of loveĒ in getting out the newsletters. Dan announced that extra newsletters were available for anyone who did not receive one and stated that our newsletter is one of only eight to ten that is published on the new UOAA web site. We have gotten some positive feedback for the new newsletter style created by Anke Gassen. Berit Veum suggested that seals be used for future newsletters as the staples were hard to remove. Dan said that seals would be used in the future.
Dan introduced Michelle Green and her husband, Bryant, as visitors. Michelle is to have ostomy surgery October 26. He then passed around a form for members to check for their attendance. Dan also suggested that members may want to visit other area ostomy support groups in nearby areas in the future. All interested members are to contact Dan. He then welcomed Becky Burns, Stephanie Yates' assistant. She stated that Stephanie is a wonderful mentor and is teaching her about ostomy care.
Dan introduced Teri Barber, Ostomy Sales Specialist for Coloplast, as our guest speaker. Teri told us that Coloplast, whose headquarters are in Copenhagen, Denmark, is the number one ostomy product company in Europe; number two internationally (ConvaTec is number one); and number three in the USA due to a slow start. The USA headquarters is in Marietta, Georgia. She then explained that Coloplastís wafer adhesive is the only ostomy product on the market that is completely synthetic. Teri passed out quarterly newsletters from Coloplast and explained that members who filled out a sample request form would automatically receive them in the mail. She then showed us a number of new Coloplast products and had a question and answer period.
Dan then thanked Ed Withers for provided new name tags for everyone and also for updating our web site and including the newsletter. He thanked Ruth Rhodes, Treasurer, for getting all of the membership dues notices out and Jennifer Higdon for her work on the newsletter.
Thanks again to Jeff and Becky Burcham for the wonderful refreshments. The November meeting will be Tuesday, November 1. The meeting was adjourned at 9:00 PM.