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Newsletter Serving Members and Friends
of the Triangle Ostomy Community

November 2005

In this Issue

UOAA - A New Beginning!
Famous Ostomates: Marvin Bush
President’s Message
Calendar - Meeting Information
Tips from Our Members
Preserving the Pouch
Minutes from last Meeting


In Brief

Calendar
November 1 - Ostomy Meeting, 7:30 pm, Rex Hospital
November 11 - Veterans Day
November 21 - Crohns & Colitis Support Group 7:30pm Duke Health, Raleigh Hospital
November 24 - Thanksgiving
 

Meeting Information
NEXT MEETING: Tuesday, November 1, 2005
PROGRAM: Computers 101: Surfing the Net - Getting Reliable Medical Information from the Internet - presented by Ed Withers and Stephanie Yates

Meetings are held the first Tuesday of each month at 7:30 PM in the Rex Surgical Waiting Room, 4420 Lake Boone Trail, Raleigh, NC. Enter through the Rex Hospital Main Entrance, which is near the Parking Garage.

Reminder: In the event of inclement weather on the day of a scheduled meeting, please contact Rex Healthcare at 919-784-3100.

Attention J-Pouchers:
Don’t forget that J-Pouchers are always welcome at our monthly meetings.
Contact Lora Edgars at 919-596-5410 for all the details.

New Schedule for Membership Renewal
If your membership expired Aug 2005, Nov 2005, Feb 2006, please pay your dues of $20.00 now for the year Sept 2005 - Sept 2006. If your membership was renewed in May 2005, it will be extended through Sept 1, 2006, without additional payment. If you have any questions, call Ruth Rhodes at 782-3460.


UOAA - A New Beginning!
Many of you know that UOA dissolved in September 2005. This being the case, a new organization is forming and info about it is found below. As a group, we will be voting as to whether or not we would like to be involved in this new organization. There would be no costs until 2007 associated with affiliation unless you decided to receive their quarterly publication. As a group, we are going to order a couple subscriptions to their magazine so that the members of our group can review it and see if they are interested in receiving it.

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 publish a quarterly magazine, "Phoenix" to which anyone can subscribe. The cost of this publication is $25.00
  • Regional and national conferences
  • network support

UOAA will receive income in the following ways:

  • 50% from the Phoenix subscriptions fees from Chapter dues, $2.00 per member with a minimum of $25.00 per Chapter. The fees for 2005 and 2006 have been waived.
  • advertising
  • sponsorship
  • individual and corporate contributions

Famous Ostomates
We are a vibrant community and we have representatives in all walks of life! Do you ever wonder if there are any folks in the public eye who have ostomies? We do too! Whenever we hear of famous ostomates, past and present, we would love to tell you about them in The Bypass.

Marvin Bush

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

Message from the President

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


Tips of the month
from www.sgvmedical.com

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.


Hints, Suggestions, and Tips from our Members

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 we’ll be sure to include your ideas in the next edition.

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Preserving the Pouch
Revision surgery for pelvic pouch failure

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.

Departmental Experience

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.

News You Can Use
Free Credit Report!
News You Can Use compiled by Jennifer Higdon and www.annualcreditreport.com

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.

Meeting Minutes
from the October 4, 2005 Meeting of the Triangle Ostomy Community

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.

Respectfully submitted, Bonnie Sessums