TheMailbag UOA Jacksonville Chapter #211
Volume 5 Issue 6
Meetings are held at the Baptist Medical Center
8th Floor - Meeting Room C - 3rd Sunday of each month 3PM
Brenda Holloway -- President 282-8181
Ronald Perry -- Vice President 774-4082
Patti Langenbach -- Secretary
Beth Carnes -- Treasurer 786-2359
(800) 741-0110 (904) 396-7827
Please plan to join us
Sunday June 22nd starting at 3 p.m.
Inside this issue
Ileostomy Do's and Don'ts
Behind the Scenes
Ostomy Chat Room
A MESSAGE FROM THE PRESIDENT & VISITATION COORDINATOR
I would like to thank everyone for attending our May meeting. We
broke down into groups to a discussion each different ostomy. Well, it
ended up all of us getting together and telling about our experiences.
Eugene Sommerville reported that he had attended the Chrohn’s Colitis
support group on a Wednesday in May, 2003 at 7:30 p.m. at the
Jacksonville Library, the Southeast Branch off JTB and Gate Parkway. The
next dates for this support group are on Monday, June 2, 2003 and
Monday, August 4, 2003. Anyone can attend if they wish.
Please keep in mind the 41st Annual United Ostomy National Conference in
Las Vegas from August 10–13, 2003. We plan on sending someone to this
conference this year and monies are need to this. If you would like to
donate toward this cause please contact me at (904) 282-8181. Thank you.
We have had no new visitation contact but this may be due to the surgeon
and the malpractice issue.
Thank you for your time and hope you attend the meeting on June 22,
2003. I will be unable to attend this meeting as I have prior
obligations with my church. Therefore, Patti from Medical Care Products
and our secretary will be hosting this meeting since Ron has been ill.
REMEMBER THIS IS THE 4TH SUNDAY DUE TO FATHER’S DAY.
Brenda L. Holloway
UOA, Jax Chapter 211
President & Visitation Coordinator
The United Ostomy Association
41st Annual UOA Conference
Las Vegas, NV
August 10-13, 2003
For more information
about the 2003 UOA Conference please visit the UOA Web: www.uoa.org or
call toll free 800 826-0826
Visit StuartOnline Ostomy Chat Room Tuesday evening 8PM CST:
Sponsored by Medical Care Products
2003 UOA YOUNG ADULT CONFERENCE
July 17-19 2003
Holiday Inn East
St. Paul, MN
http://www.uoa.org/yan/yacflyer.pdf (Adobe PDF, 95kB)
2003 UOA Young Adult
Conference July 17-19, 2003
being held at the Holiday Inn East St Paul MN. For more
information visit the UOA Web: www.uoa.org or call toll free 800
Ileostomy Do's and
From The New Outlook, Chicago's North Suburban Chapter UOA
A collection of ileostomy don'ts:
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
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:
United Ostomy Association:
BEHIND THE SCENES -
5/1/03: Your UOA National Team at Work.
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
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
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
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
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.
Chat Room Weekly Meetings
Peoples with Ostomy2*
- Mondays, 8:00 pm US Central time
StuartOnline Ostomy Chat*
- Tuesdays, 8:00 pm US Central time
Zero (Ostomy) Support*
- Wednesdays, 9:00 pm US Eastern time
Jason's Chat* -
Saturdays, 8:00 pm UK time / 3:00pm US Eastern Time
UK Ostomy Support*
- 1st & 3rd Sundays, 8:00 pm UK time / 3:00 pm US Eastern Time
Provided as a courtesy
by Jacksonville UOA Chapter.
These Chat Rooms are the work of individuals and do not represent any