Contacts:
Brenda Holloway -- President 282-8181
Ronald Perry -- Vice President 774-4082
Patti Langenbach -- Secretary  396-7827
Beth Carnes -- Treasurer 786-2359
(800) 741-0110 (904) 396-7827 patti@ostomymcp.com

Inside this issue

Ileostomy Do's and Don'ts
Behind the Scenes
Advocacy
Ostomy Chat Room
 

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Ileostomy Do's and Don'ts
From The New Outlook, Chicago's North Suburban Chapter UOA
 
A collection of ileostomy don'ts:

Don't fast
Fasting can lead to serious electrolyte imbalances, even when adequate fluid intake is maintained.
 
Don't limit fluid intake
Ileostomates are always slightly dehydrated due to the constant outflow of fluids, so maintaining
fluid intake at all times is a must. You need to drink at least two quarts of fluids a day.
 
Don't eliminate salt from your diet
Since salt is also lost with the fluid outflow, even those with high blood pressure should not eliminate salt altogether. Be careful adding excessive salt to your diet. The normal American diet is already loaded with more than enough salt for your needs. Consult your physician for your recommended salt intake when other physical problems are a consideration.
 
Don't put things into your stoma
Do not allow anything to be put into your stoma without your own doctor's personal supervision. Less familiar doctors have sometimes given incorrect routine orders in hospitals for enemas, etc. Question any procedure that intrudes upon the stoma, including suppositories. Do know how to irrigate your stoma in case of a blockage.
 
Don't take any medication unless you know it will dissolve quickly and be fully absorbed
Before filling new prescriptions, be sure to ask your pharmacist whether it will dissolve in the stomach quickly. Coated and time-released medications will not be absorbed, and will pass through without benefit. If in doubt, purchase only six pills, and try them before getting the rest of the prescription. Women should be especially alert when taking birth control or estrogen replacement medications.
 
Don't take any vitamin B-12 product for granted
Have your doctor check your B-1 2 level whenever you have a blood test taken. Some ileostomates with some of the small intestine missing may require B-12 injections when they do not absorb enough of this vitamin.
 
Don't give blood
Ileostomates cannot afford to lose fluids even though they are healthy. Giving blood may lead to a serious dehydration issue.
 

Ostomy Discussion Forums 

Ostomy Related Discussion Forums where one may post and or find answers to 

questions about living with an Ostomy:

International Ostomy Association: http://www.ostomyinternational.org/cgi-bin/dcforum/dcboard.cgi
United Ostomy Association: http://www.uoa.org/discussion/

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BEHIND THE SCENES - 5/1/03: Your UOA National Team at Work.

UOA Networks.

As reported in the January Behind the Scenes we now have four distinct youth and young adult “networks” or national groups. Each network will have its own specific programming “Track” at the UOA Annual Conference. Also each network will have its own space on the newly designed UOA Web site and in the Ostomy Quarterly and will be given the opportunity for its own message board and chat room on the UOA Web site.

To remind everybody, our youth networks are: The Parents Network which serves parents of children up to 17 years old with ostomies or related procedures. This year we are introducing our Parents Scholarship Program where we will be sending families to our Annual Conference in Las Vegas for the entire event. The UOA Teen Network serves the 12 – 17 year old segment and complements our annual Youth Rally. They will be introducing a “Mentoring” program where we will be matching up teens with a same sex young adult with the same procedure, like the Big Brother, Big Sister program. Our Young Adult Network focuses on the 18 –25 to 30 year old group. This year we will be conducting the first Young Adult Conference specific to this group. This conference will be July 17 – 19 in St. Paul, Minnesota. Finally we have our Thirty Plus Network for young professionals, singles, newly married ostomates, etc.

Strategic Partners

Several years ago, we concluded that without help from a number of our strategic partners, UOA would have much less ability to both deliver and market its services. The partnership program is now moving into its third year. Following a meeting at Cymed in Berkeley, CA, on May 5, we now have the following partnership meetings scheduled: May 15—AOS in Milwaukee; May 15—Hollister in Libertyville, IL; June 5—CCFA in New York City; June 6—ConvaTec in Skillman, NJ and j-pouch.org in Philadelphia, and June 17—Coloplast at the WOCN Conference in Cincinnati.

Conferences and Events

We now are moving into the busiest time of the year for conferences and events. In the next three months your leadership has the following:

WOCN Annual Conference, June 14–17 in Cincinnati.
UOA Youth Rally, July 12–16 in St. Paul, MN.
UOA Young Adult Conference, July 17–19 in St. Paul, MN.
UOA Annual Conference, August 10–13 in Las Vegas.
UOA Canada Annual conference, August 14–17 in Saskatoon, Saskatchewan.

The SARS epidemic has reached into our international activities. The World meeting of the International Ostomy Association scheduled for October has now been cancelled over SARS concerns
 

Advocacy and Prevention

In March and April UOA members took part in two events in Washington, DC, both aimed at increasing the funds for two federal agencies:

The National Institutes of Health for research into diseases that lead to ostomy;
The Centers for Disease Control & Prevention, for activities to promote colon cancer screening.
Nine members attended the Public Policy Forum of the Digestive Disease National Coalition March 23-24, and 3 members attended the lobbying effort of “One Voice Against Cancer” April 7-8. Team visits were made to Congressional offices to educate Congressmen about the value of research.

UOA continued to follow developments in California and Oregon – both states may terminate access to ostomy supplies for their residents who rely on Medicaid. A number of California members who received letters from UOA began to educate their legislators, and several attended a Budget Committee hearing on 3/24, where one member was able to testify to the fact that ostomy supplies are not optional. We have proposed ways that California may save Medi-Cal funds on ostomy supplies without cutting them completely.
Government Affairs Committee (GAC) Chair Linda Aukett and GAC member Vince Puma presented information about United Healthcare and Florida Medicaid to a meeting of the Florida Association of ET nurses on 3/15 to alert them to progress made and build a basis for collaboration in the future.

GAC Chair Linda Aukett and Consultant Colin Cooke, and others from the Coalition for Access to Medical Services, Equipment and Technology (CAMSET) met with General Accounting Office officials to discuss the problems inherent in competitive bidding, a mechanism that Congress seems intent on implementing in urban areas. Since then we have submitted additional background information.
Content was perfected for a “web sticker” that chapters can add to their own website, directing their site visitors to the UOA Advocacy page to send Congressional messages.

Statistics:
The GAC chair responded to 70 calls and e-mails seeking assistance with Medicare, other reimbursement problems and other advocacy issues.

Nine issues were added to the Advocacy page at www.uoa.org/advocacy.
Seven Alerts were sent to the members of the “Advocacy Action E-List.”
Three Medicare updates were sent subscribers to the Distributors e-list.

On April 4–6, Ann Favreau was part of a panel and distributed UOA materials at the Colon Cancer Alliance Conference in Washington, D.C.

 Ostomy Chat Room Weekly Meetings

 Yahoo Peoples with Ostomy2* - Mondays, 8:00 pm US Central time
http://clubs.yahoo.com/clubs/peopleswithostomy2

 StuartOnline Ostomy Chat* - Tuesdays, 8:00 pm US Central time
http://www.stuartonline.com/chatroom.htm

 Community Zero (Ostomy) Support* - Wednesdays, 9:00 pm US Eastern time
http://groups.yahoo.com/group/ostomatessupport/

Shaz & Jason's Chat* - Saturdays, 8:00 pm UK time / 3:00pm US Eastern Time
http://www.ostomy.fsnet.co.uk/chat.html

 Yahoo UK Ostomy Support* - 1st & 3rd Sundays, 8:00 pm UK time / 3:00 pm US Eastern Time
http://clubs.yahoo.com/clubs/ukostomysupport

Provided as a courtesy by Jacksonville UOA Chapter.
These Chat Rooms are the work of individuals and do not represent any organization.