May 2004
Last Month's
Meeting
Finally spring! Nobody loves spring as much as a Chicagoan,
and it was easy to see the joy at this month’s 29th Anniversary
Meeting. We are changing the formats of our
meetings so that we have better discussions regarding ostomy surgery. Stay tuned to see the new exciting changes
that take place this next year.
Jane Michnik presented a special
recognition to some of our friends at Hollister, Inc., who have been loyal
supporters of the work of our Chapter.
We are very grateful that these individuals have been there for us in so
many different ways. During the
anniversary meeting, we recognize someone who has been especially
extra-ordinary in his/her support of the Chapter by presenting him/her the Al Sarno Award. This years recipient—the obvious choice—is
our treasurer, Tim Traznik. An article
about this is included.
Our guest speaker is a favorite of our
members—Dr. Ernestine Hambrick, a successful and highly respected colon and
rectal surgeon. She created the STOP
Colon/Rectal Cancer Foundation in 1998 and currently serves as its chairperson.
A passionate and persuasive speaker, Dr.
Hambrick told us that virtually nobody has to develop colon cancer. This is great news! Colon cancer almost always starts in
non-cancerous growths called polyps that develop on the lining of the colon or
rectum. The key to prevention is to get
tested starting at age 50 if you are average risk, or at an earlier age if you
are at increased risk. The best test is
having a colonoscopy examination, although even a fecal occult blood test is
better than nothing.
Polyps can become cancerous, but if they
are found early enough through screening tests and promptly removed—a
completely painless procedure done during the colonoscopy exam—the cancer can
easily be stopped before it ever gets started.
In fact, scientific research has shown that up to 90% of colon and
rectal cancers can be prevented just by finding and removing polyps before they
become a cancer.
You can decrease the colorectal cancer
risk by:
·
Finding
and removing polyps
·
Increasing
physical activity level
·
A diet
high in vegetables and fruit
·
Dietary
calcium and selenium
·
Taking
folic acid and aspirin
You can increase you risk of cancer by:
·
Diets
high in red meat
·
Excessive
alcohol consumption
·
Tobacco
use
So
spread the word:
Do the Test.
Find the Polyp.
Skip the Cancer!
We’d like to thank Gary Hesselberg, Frank
Giorno and Vera Miller for bringing treats to our hospitality table, and Joan
Loyd for taking care of the anniversary cake ... good choice Joan. The lucky winner of the 50/50 was special
guest Carol Peters from Hollister, Inc., with the consolation prize awarded to
Gerri Eiseman. Hope to see you again
next month.
President’s Message:
The Lake County Chapter of the UOA is
trying to re-vitalize and will be having its first meeting on May 15 at 10:30
a.m. at the world headquarters of Hollister, Inc in Libertyville. Some of us from our Chapter will be there to
participate in a panel discussion. They
have asked us to speak about what is means to belong to a UOA chapter. I wanted to share what I plan to say.
“I have been asked to speak to you today
about what it means to belong to a chapter of UOA. I believe I can speak to you with some
experience. I have had my ostomy for
almost 30 years. But, I did not join UOA
until after I had had my ostomy for over 10 years ... and then only because a
friend dragged me to a meeting after she had her surgery! Having now been active in UOA for over 15
years, I have been on both sides of the window.
I have always thought of myself as a strong person who did not need help
or support from others outside of my family.
I did survive for 10 years without UOA ... but just barely.
After I joined our Chapter, I found out
that there was new disposable equipment that had been around for a while. I was still using a permanent ostomy system
because I thought that was all that was available. This discovery made a positive change in my
life. I also learned what I could do to
prevent blockages, how to help control odors—a major problem with the old
systems and non-existent with the new—and many more helpful suggestions that
made my life much better. But most
importantly, I learned that there were many other people just like me who had
experienced the same emotional and physical problems after ostomy surgery.
Being part of Chicago’s North Suburban
Chicago Chapter, not only did I learn from other members, but I was also able
to share some of my own tips and suggestions with new ostomates. Now, I could put my experience to use helping
others, and I would leave meetings feeling better about myself. I remembered how I felt my first year after
my surgery, and how I could have used some support from experienced people with
ostomies.
The only way a good UOA chapter can
survive is with the advice and support of experienced ostomates who come to the
meetings to be a good example to the new ostomate. Yes, good is achieved by visits via the phone
and e-mail, but the up close and personal touch is what people need after they
have undergone such a drastic change in their lives—ostomy surgery. I was a volunteer for the Red Cross Disaster
Services, and the one basic principle they taught us was that after people have
gone through a disaster, (or any life-altering change) they need someone to be
there to be there for them ... to have someone listening who cares.
Members of a UOA chapter not only provide
emotional support but also tangible know how because they have “been there and
done that”. We share our own experiences
in the hope that others may benefit from our experience. This is something that only another ostomate
may help them achieve. Support from
family and friends is great, but only another ostomate can talk to them about
equipment, blockages, food, nutrition, odor….
So, why should someone who has had their
ostomy for many years continue to support their chapter and come to
meetings? Well, things keep
changing. Our bodies change, equipment
choices change, and our home and life situations keep changing. Where else can you obtain useful information
to keep you current than your local chapter meeting? And most importantly, your chapter needs
you! If you didn’t come to the meetings,
who would be there to help the new ostomate?
And, you will obtain great personal benefits. I don’t know exactly why, but our active
members have better, happier and more fulfilling lives.
I believe that many people are like I used
to be and endeavor to struggle through on their own. In doing so, they miss many opportunities for
a better life. Don’t miss your own
opportunities. The UOA chapter is there
for you. Hopefully, you will be there to
share what you received by being an active chapter member.”
Jane Michnik
Advertising
Rates
1/8 page $
400 per yr.
1/4 page $
600 per yr.
3/8 page $
800 per yr.
These rates include an ad in all eleven issues of our
Chapter newsletter, The New Outlook,
plus an ad on our Internet site at www.uoachicago.org .
Lake County Ostomy Group
The first
meeting of the newly reinstated Lake County Ostomy Group will be on Saturday,
May 15 at 10:30 a.m. until 3:00 p.m. at the world headquarters of Hollister,
Inc. (They are located in Libertyville
just north of the Vernon Hills Mall on Milwaukee Avenue.)
Luncheon is provided
and will be at 12:00. Please RSVP if you
are going to join us for lunch. Jane
Michnik and Dave Rudzin will be in a panel discussion during the morning;
Ginnie Kasten will be conducting the afternoon session. An experience Hollister, Inc. ET has been
arranged to be there to make a special presentation.
If you would
like to attend, please contact Nadine Presley at 847-356-0632 or Judy Gaughan
at judy.gaughan@hollister.com
.
Friends of Ostomates Worldwide
Bouquets of
“thank you’s” are blooming at FOW-USA this spring! First, a big thank you to Renard, the editor
of The New Outlook for keeping
all our members up to date on FOW-USA activities.
A thank you
goes to Edmund Gelfund for donating a heavy duty fax machine which we can use
as a copier at our warehouse. Out with
the carbon paper—in with technology. We
really are enjoying your donation, Edward.
A thank you goes to Bob and Elaine Wilke who come the first Tuesday of
every month and spend the morning sorting donations, assembling shipping
cartons, then packing the cartons with supplies to go overseas. You are so loyal and so faithful—and very
much appreciated. A thank you goes to
Morris Chercasky, our newest volunteer, who is willing to tackle any job that
needs doing. Morris, your cheerful
enthusiasm is an inspiration.
A huge thank
you for Mike Cherry. Mike single
handedly recruits from 10 to 16 people to come one Saturday a month to work at
the warehouse. This wonderful crew of
Hollister, Inc. employees sorts, packs, stacks pallets, empties trash ... our
warehouse would not be productive without these willing, hard working people.
Thank you, Mike and thank you to all your amazing friends and co-workers. And of course, a thank you to Mario Pardo and
Marilyn Mau, without whom the mission of FOW just would not happen.
A thank you to
all you, our members of Chicago’s North Suburban Chapter of UOA. Moving the FOW-USA warehouse and shipping
operation to Glenview was a risky undertaking.
You have risen to the challenge.
Thank you for your continuing interest and support. When the time comes that you would like to add your
name to our list of volunteers, please call me, Joan Loyd, at 847-724-8002.
Al Sarno Award for 2004
We are very
honored to report that our friend and board member Tim Traznik has been
presented with the Chapter’s highest honor for service to our members ... The Al Sarno Award. Tim has been a member of our Chapter
for over seven years, ever since he had his permanent ileostomy. Tim originally had surgery to create a
j-pouch to cure his ulcerative colitis. Unfortunately, Tim is a borderline
hemophiliac—undiscovered until just a few years ago—and had massive
hemorrhaging after surgery. His surgeons
transfused almost a gallons and a half of blood to keep Tim alive. Although he had these terrible complications,
he was still young and strong ... coming out of the surgery relatively healthy.
Because of this and other issues, Tim needed to have his j-pouch excised and
given a permanent ileostomy. Tim has had
complications from this surgery also; notably a prolapsed stoma for which he
had repaired just a few years ago. But
all in all, Tim will smile and tell you how great things have been since his
surgery.
Tim will
celebrating his 20 year anniversary with United Air Lines this fall. Tim went to work for them right after he
graduated from the University of Illinois—Chicago and has worked his way up to
become senior staff accountant. Tim is
an avid golfer who shoots so well that it is an embarrassment to the rest of
us. He enjoys NASCAR racing when he has the time which is pretty limited right
now with his growing family.
Tim has a
lovely supportive wife, Cathy, whom he met and fell in love with after his
surgery. They have two handsome boys
Kevin—four years old, and Steven—eight months old. We see them all coming to our general
meetings at regular internals.
Although Tim's
life is more than full, he still makes time to serve the Chapter. He
volunteered to become our treasurer five years ago after Frank Giorno retired
from serving in this position for 15 years.
Tim has been a loyal and supportive member of our Chapter, a person I am
proud to call a friend, and he was the obvious choice for this honor.
Self-Concepts and Ostomies
By Dr. Sue Bergman via ReRoute, Evansville, IN
Self-concept can be viewed as, being made
up of several components:
·
Work
Self-Concept: How we see ourselves as workers.
·
Family Self-Concept:
How we see ourselves as parents, spouses, sons or daughters.
·
Sexual
Self-Concept: The view we have of ourselves as sexual men or women.
·
Physical
Self Concept: How we see our bodies.
Ostomy surgery certainly affects the
sexual and physical parts of how we see ourselves. It can also have an overlapping effect on the
other parts of our self concept. We have
to see everything in this new light and the adjustment process may take as much
as one to two years—sometimes longer.
The better we adjust, the more comfortable
we will feel ourselves and the better others will feel with us. This adjustment process after ostomy surgery
takes the form of several major factors:
First, learning how to use an ostomy
system and to find the right combination of equipment. If things don’t fall into place and we don’t
get the “knack” of it, if we are misguided by the wrong information, we can be
thrown into a tailspin which, in turn, can lead to a state of depression which
might be difficult to overcome. But,
once we’ve mastered an ostomy system, we can go on to the incorporation of it
to our entire body image and self concept—how it looks on us with or without
clothes, how it feels in the swimming pool or during sexual relations and what
we need in order to feel more comfortable with it; such as, special covers,
etc.
The next step is the adjustment to the
day-to-day aspects of having an ostomy.
We have to get accustomed to our ostomy system’s presence as a constant
part of our lives. For me, this was a
personal challenge. I had some really
rough times accomplishing the mechanical activity of putting it on. I felt like such a mess. But somehow, I overcame these feelings once I
mastered the application of my ostomy system.
It really is so easy to do.
For me, the hardest part was the
realization that this would be with me for the rest of my life. I particularly had difficulty waking up with
a full puffy pouch every morning to remind me of the everlasting presence of
this thing that was now an intricate part of my self-concept.
However, as time passed, this became a
smaller and less important part of my life.
With each day, I felt more comfortable about my new self-image and
everything in my life fell back into a clearer perspective. It was certainly a slow process for me as I
am sure it is for most people, but feeling healthy again sure makes up for
these small issues.
By way of the Internet
Colostomy:
·
If you use
just a pad instead of an ostomy system, use a little K-Y Jelly over the stoma
to keep things soft and lubricated.
·
If you
irrigate; allowing too much water to enter the stoma too quickly may cause a sudden
evacuation of waste but leave much of the feces still in the colon, along with
most of the water. Periodic evacuation may follow. This is not really diarrhea,
but is simply a delayed emptying of the colon.
Ileostomy:
·
Usually,
people with ileostomies experience hunger more often than other people. When this happens, drink fruit juice or water
and eat soda crackers, followed by a meal as soon as possible.
·
If you
need to eat a snack at bedtime or during the day in order to ward off nausea,
try to cut down on calories somewhere else in the daytime or you will gain
weight.
·
Never
skip meals in order to lose weight. An ileostomy keeps working whether you have
eaten or not.
Urostomy:
·
If it
is necessary to have a urinalysis, remind the nurse to take the specimen
directly from the stoma, not from the appliance.
·
If you
are out of Uri-Kleen, soaking your urinary pouch in straight white vinegar for
thirty minutes will kill all common bacteria found in urine.
·
Mucous
in the urine is normal. The ileal conduit is made of mucous secreting
intestinal tissue. It doesn’t stop doing its job even though it is transporting
urine.
An Added
Tip: If you use a two-piece system, the pouch may not be totally secured when
you snap it on and could fall off when half full. Make sure the pouch is snapped to the flange
securely. Start snapping it together at
the bottom and work your way to the top.
Give a little tug on the pouch to test its lock, but make sure you hold
the faceplate/wafer so you don’t break the seal.
A Response to 20/20 from a Friend
UOA Discussion Board
I guess I, too,
was a bit disappointed that nothing was mentioned at the end of the 20/20
episode on March 12, but only because it seemed as if it had been promised to
us. If only they had said something on the order of:
"We have received a lot of contacts from people who
felt that during Barbara's recent interview of Meredith Viera, her question
about ‘the bag’ as well as Meredith's response, implied a stereotypical,
negative view of ostomies. For further
well-balanced information on the subject of ostomies and the way in which
ostomy surgery may save lives or at least return a sense of normalcy to an
otherwise disease or pain-ridden life, call, write, or e-mail the United Ostomy
Association at . . ."
Of course, that is perhaps a bit idealistic on my part.
In this
business a good, strong leader—UOA—can present an opportunity to us, inspire us
to do our best and motivate us to keep moving forward. In the end, however, it is up to us to do the
work. We have to continue to make our
own positive press.
The problem
with looking for someone with no personal investment in the matter to present
an opportunity to change the negative image having an ostomy has acquired is
the same as relying on a politician to solve all of our problems. No matter what they promise, they simply
can't solve everything for each us. We
have to take the initiative and make our own positive press. We also have to support—financially and with
our time—those organizations doing their best to present the positive side of
life with an ostomy.
Perhaps the
"offending" network in any case (this is not the first time it's
happened and I'm sure it will happen again) could be persuaded to do a small
feature during the health segment of the morning or evening news/talk shows?
Even more
important, in my personal opinion, is to focus on educating all medical
personnel. The attitudes of many of the
people I encountered as I continued to pharmaceutically battle my Crohn's were
what colored my opinion of a life with an ostomy. Not once during that time was I ever
presented with anything really positive about the surgery and it's aftermath,
and I saw many different medical personnel during that time.
To this day,
when I have x-rays or other medical testing which involves disrobing or
manipulation of the part of my body which contains the external pouch, I find
myself answering questions from medical staff who seem to be totally
unacquainted with the day-to-day care and maintenance of my ileostomy. Oh, they are aware of it as a clinical term,
but as far as living with it—they don't have a clue!
My decision to
have my surgery was made based on two facts presented to me by my surgeon,
"You may get to be almost medication—free for at least 8-10
years." And, "If you don't
schedule the surgery now, you'll soon be in emergency surgery and the outcome
may not be as good as with a planned surgery,” meaning that I’d be dead.
I had to
actively seek out information from other sources as I really found no positive
information in the medical offices I visited.
I read a good book Coping with
An Ostomy, which covered all the various aspects of life with an
ostomy. I spoke with a friend of a
friend who had her ileostomy surgery in her twenties since she wanted to be
able to enjoy life with her two young children.
She said she had never looked back, and her only regret was in delaying
for so long. Those were the positives I found along the way.
After the
surgery, I started lurking and then occasionally posting to a couple of the
electronic support groups and received positive reinforcement from people
living positive, energetic lives.
We have seen in
national publications, and on TV spots, information about continent ostomies.
Why don't we see the same sorts of things from UOA? Is there just not enough money being
contributed/raised?
It seems as if
all the "marketing" I have seen has been geared toward the person
with an ostomy and his/her family. It should
also be geared toward the currently healthy individuals who may one day need to
have ostomy surgery or to help a friend or family member to live joyously with
theirs.
I have had my
ileostomy for a little over nine years now.
It has been a great nine years, very different from the 11-12 years
before I had the surgery. It didn't have
to be 11-12 years of problems—had I received more positive information about
life with an ostomy, I would have had the surgery much sooner.
I am just
trying to get across the fact that we have got to help those in the medical
field understand that an ostomy can be a beginning—not only lifesaving, but
often a blessing in a life filled with medication or other side effects related
a disease or injury. Their attitude—typically
of an ostomy as a very last resort—is often the very thing which makes patients
feel as if it is a thing to be avoided at all cost.
The literature,
videos and CDs which show the positive aspects of our lives as people with
ostomies needs to be in the waiting rooms of gastroenterologists, urologists,
oncologists ... not just in the surgeon's office (if that). It should also include local UOA chapter
contact information as well as sources of additional information.
It should have
pictures of folks with ostomies, young and old, famous or not, at work and at
play, wearing the kinds of clothing those folks would normally wear.
The young woman
I spoke with prior to my surgery told me that not only could she hike many more
miles than her husband without having to make a "pit" stop, she could
wear a two piece bathing suit without any sign of her pouching system. That "clicked" with me. When she told me how much better she felt
even before she had fully recovered from the surgery, I knew I was making the
right decision.
It is right for
us to point out to news and TV show producers that having an ostomy is not the
negative thing they are stating on these shows, but when they won't present the
other side, we need to focus on those things which can help.
If you don't
have money to contribute, try participating in your local UOA chapter. If you don't have a local chapter, start
one. If there aren't enough folks for a
chapter, then you just have to become an educating committee of one! Karen F
Does Your Stoma Hurt?
By Victor Alterescu, ET
Quite often people tell me their stoma
hurt. This surprises me a great deal
since stomas don’t have any sensation. You
could cut, burn, do virtually anything to the stoma and you would not feel a
thing. That’s hard to believe but
true. Stomas do not have receptors for
pain.
Sometimes the lack of stoma sensation can
lead to problems. For example, an
incorrectly fitting ostomy system may cut into the stoma, but no pain will be
felt. A stoma can be badly damaged
before the problem is noticed. For this
reason, it is important not to wear your barrier for more than a week. It is necessary to see the peristomal skin
and see if the stoma is in good condition.
Actually, when people talk about stoma
pain, they are usually talking about pain from the skin or tissue from around
the stoma. Peristomal skin is full of
nerve receptors that are sensitive to such things as heat, cold, chemicals and
adhesives that can cause significant pain.
It is the skin or surrounding tissue that is sensing the pain and not
the stoma itself.
In addition, severe pain may be caused by
a blockage either in the bowel or at the point where the intestine comes
through the skin. These are different
types of nerves that will sense this effect.
Plus, the systems in the body are related and when one system is causing
a problem another may cause a sensation to take place alerting us. These types of systems should not be confused
with the absence of felling in the stoma.
If any unusual symptoms or irritations are
noticed, contact your ET nurse for an evaluation. He/she can offer advise and treatment for
virtually any problem you have with your stoma.
Do not settle for mediocrity in ostomy management.