Last Month’s Meeting
We had some special guests at our October
meeting including three caring nursing students from
Joan Loyd relayed the successful shipments
Friends of Ostomates Worldwide (FOW) has made of much needed ostomy supplies to
the very poor in
Peggy Bassrawi, RN, encouraged those of
our members who are at high risk for complications due to the flu to obtain a
flu vaccine this year. One serious flu complication
for many people with ostomies is diarrhea, which could lead to an emergency
situation. However, she warned us about
obtaining a flu shot if we are allergic to eggs as well as other conditions
your doctor would be aware. In addition,
she said pregnant woman should be cautious about getting a flu shot.
As a side note and a key reason for coming
to ostomy association meetings: a man passing by our meeting saw our banner and
stopped in for a moment. He has an
ileostomy and complains that Medicare only covers 20 changes a month. We quickly told him that if he was to obtain
a doctor’s prescription for 30—he changes his ostomy system once a day—they
would gladly accommodate his need for 30 changes a month.
The main feature of the evening was a
discussion by our members on, “What did you do after ostomy surgery that you
did not do before it.” It was a moving
discussion. Some people were very
emotional about the successes they have achieved by agreeing to undergo ostomy
surgery and thereby choosing life. Some
of the activities mentioned included: waterskiing, hot-air ballooning, overseas
travel, getting married and having children, operating an international
warehouse operation benefiting the poor, not looking for every bathroom when
outside the home, not worrying about that “accident” when at work, going to our
ostomy association meetings, etc.
We had
some new people visit us for the first time as well as some current members with
some permanent changes. Cheryl Jones
changed her name after getting married in October to Cheryl Crook. She brought some of her wedding pictures . .
. what a perfect bride. Tim Traznik, who
had hip surgery in October, is recovering just fine. We are grieved to report that a loyal
association member, a past winner of the Al Sarno Award and a great contributor
to ostomy causes, Gary Ponti, died. Dave
Rudzin is keeping us up-to-date about the upcoming national UOAA convention to
be held next August in
According to our new bylaws, we will have our Association elections in January. The slate of candidates includes:
Jane Michnik, President
Renard Narcaroti, Vice President
Tim Traznik, Treasurer
Joan Loyd, Director
Rhoda Gordon, Director
If you have a talent that you would like to share by participating in one of our many diverse committees, please let us know. Some invest as little as an hour a month. If we all pitch in, it makes the burden lighter for all of us. We are still looking for a new meeting location near I-294. If you know of one, please discuss it with us.
We would like to thank Jane Michnik, Renard Narcaroti, Gail Olson and Dave Rudzin for bringing treats to our Hospitality Table. The winner of the 50/50 consolation prize was Daire Barry. Next month is our Gala Holiday Party. We will have it on a special date, Wednesday, December 13, which will take the place of our November and December meetings. Sally Schinberg is chairing the celebration. Please see the attached article. We always have a great time and everyone is welcome. Be sure to come.
Happy Thanksgiving!
Coming Events
December 13—Our Gala Holiday, Pot Luck Party Eating, singing, dancing, carrying-on and just having some fun: Sally Schinberg is managing this affair. (See the article for details.)
January 24—We are fortunate to have the president of one
of the leading ostomy supply retailers
in the world, Erik Kolacinski from Mark Drug Home Healthcare, accept our
invitation to come and visit us to talk about, “How to Buy Ostomy Supplies . .
. .”
February 28—Mary Jane Wolfe will present a slide program
showing the good work of the Youth Rally.
It is inspiring to see the dramatic changes a person can achieve with a
little support. This is a program
especially designed for people of all ages who have gone through ostomy
surgery.
You are welcome
to join us on the third Saturday of every other month from 10:00 AM until
12:00 noon. We hold our meetings in
the cafeteria at the world headquarters of Hollister, Inc. in
November 18
December 16 (
We
need your participation in order to keep our group viable. Contact any board member with questions or
suggestions: Barbara Canter, 847-394-1586; Barb Fiene, 847-740-5492;
Carol Rhodes, 815-459-2691 or Judy Gaughan at judy.gaughan@hollister.com
.
Southwest
Suburban
The Southwest Suburban Chicago Ostomy Support Group is an entirely
volunteer ostomy association dedicated to the mutual aid, education and moral
support of people with ostomies and their families. Meetings are held at 7:30 PM on the third
Monday of each month throughout the year, except July, August, December and January.
2006
November
20—
December—Gala
Call
for details
2007
February
19—Little Company of
Potter
Pavilion
2800
March
19—
127th
&
April
16—
May
21—
June
18—Little Company of
Potter
Pavilion
For information regarding this special ostomy group serving
Support Your Ostomy Association
We are now offering free membership to our
Association. To provide for our few
expenses (mainly the publishing of The New Outlook) we need your
assistance. Please send a contribution
to help maintain our group’s viability.
Name
& Address: ___________________________
__________________________________________
Send
To:
Ostomy Association of Greater
Mr. Tim Traznik, Treasurer
The
One of the programs is an introduction to the
Our Gala
By Sally Schinberg
Yes,
the holidays are right around the corner, and that means Party Time! This
year's potluck dinner and festivities will be Wednesday, December 13, 2006, at
7:00 p.m., in our usual meeting place, the 10th Floor-West Special Function
Dining Room of Lutheran General Hospital. We will enjoy music, games,
prizes, and fabulous food—provided by all of us, of course. Whether you
have a favorite recipe or rely on "carry-out" let me know what you
will bring. We need appetizers, salads,
main courses, side dishes and desserts. Either e-mail me at sallyschinberg@yahoo.com, or call me
at 847-364-0690. If a man answers, it's Jerry, and he takes very good
messages.
In
the spirit of holiday giving, we will have a Youth Rally Money Tree to provide
funds for children with ostomies to go to a weeklong summer camp especially
designed for children with ostomies or diversionary surgery. Donations
are voluntary, but having fun will be mandatory. Bring your spouse or
significant other to share in the joy of the season!
If
any of you are able to come early to help, we start setting up at 5:30
p.m. Assistance with cleanup would also be appreciated . . . we never
turn down capable help.
Have a wonderful Thanksgiving, and we will see you at the Party!
Friends of Ostomates Worldwide
FOW is a charity made up exclusively of caring volunteers for sending desperately needed ostomy and medical supplies to people with ostomies in countries where these products are not readily available. We obtain these supplies by donations from individuals and groups who have brand-new unneeded ostomy equipment.
Our world headquarters is located right
here at 4304 Regency Drive,
We always need capable help. When you are able to assist—if you can come on a regular schedule or if you can give just a few hours occasionally—give Joan a ring at 847-724-8002.
A Sincere Thank You
We
would like to offer sincere thank you to all the donors who financially gave so
generously to our ostomy Association over the past year.
Raymond Baran Carrie Lyn Gronau
Mabel Richards Gordon
Jeanne Dwarshuis Marlene Greenberg
Joseph/Mary
Frank Mesch Josephine Meyer
Vera L Miller John Russell
Ed Stipulin Rev Walter Turlo
Elaine Wilke James Frediani
Morris Chercasky Connie Edwards
Claire Guistolise Rita Jermal
Bernyce Justice
Rita Lauzon Judith Orenstein
Dorothy Ralph Ramon Ruiz
Bernice Seidel
Ellen L. Credille Raymond Elvey
August Gatto Richard Guggenheim
Rick Kolpek
Jan Lorys Daniel McCue
Vicki
Luella Rayman Judy Reisdorf
Ella Ross Peter Scola
Annette Soltysiak Frank Vajarsky
Liduina Barbantini John Bzdusek
Karen Cassin Jennifer Dore, CWOCN
Donald Field Robert Fricke
Gayle Gilchrist Beth Garrison, CWOCN
Mark Goldman Margaret Hawley
Wendy Helfand
James Kalivoda Roberta Kransy
Darlene Lang Judith Marx
Kenneth McCormick Robert McGouey
Raymond Roman David Rudzin
Philip Shapiro Emmet Skroch
Teri Smarzewski Richard Stallman
Jane Steinbach Ruth Steinhagen
E.R. Sutherland Judy Svoboda
Rick Termine Tim Traznik
Peter Zonsius Aggie Carney
Rosalie Kowalski Louis/Barbara Pressburger
Diane Rudden Robert Salata
Muriel Kaplan Jeanette Jenkins
Patricia Jones Diane Vrlich
Herwin Blitstein Jay Danielian
Richard Dorman Barbara Ebner
Reuben Erickson Kathleen Fox Polizzi
Don Fradkin
Michael/Rhoda Gordon Catherine Kamermayer
Jason King
Kate McVay Jane Michnik
Earl Mueller Harriet Musielak
Renard Narcaroti Gladys Ostergaard
Mario/Sharon Pardo Miro Haviar
Jerry Pospisil Fredrick Shulak
Martin Snitzer Joseph Stastny
Loretta Stempinski Dominic Venturi
Lois Czech Mary Dyer
Allen Kabat Robert/Marilyn Mau
Dolores Obregon Gustav Totzke
Jim DeYoung William C Stein
Kathleen King Peggy Bassrawi
Paul A. Odell Kathleen Larsen
Mark Drug Home Health Hollister
Incorporated
Youth
Rally—A
By Mary Jane Wolfe
The first Youth Rally was held in 1978. Each summer, about 100 young people between the ages of 12 and 17 who have had bowel or bladder surgeries or related procedures live in a college dormitory for five days with adult counselors and WOC nurses. Teenagers who have never met another person with their diagnosis find out that they can share their feelings and fears with others who truly understand. They are able to learn about new procedures and new products that may even change their lives.
I could share many stories of individuals who would say themselves that this event truly changed their lives but here are just a few examples. One young person first came to the Rally with a poor self esteem and called herself “crippled” despite the fact that she was a very attractive young woman. Not only did she stop considering herself handicapped but also this last summer she appeared at the pool modeling a two-piece bathing suit looking and feeling gorgeous.
Another very tough teenage first came to
the Rally from
Another young woman first came to the Rally with a tough outer shell. She was being passed from foster home to foster home because she did not like herself. At the end of the Rally week, she went back to her foster family a different person. The family adopted her because she was finally able to share her feelings with others at the Rally. This young woman came back several years later as a counselor because she knew how much the Rally had changed her life.
The Youth Rally is now a separate
organization from UOAA and relies on your donations to keep it going. Your donation will help to sponsor
scholarships so that those teenagers whose families cannot afford the airfare
and Rally registration fee are still able to attend. Many of you are probably grateful that you can
talk to others at your support group meeting and get advice. However these teenagers usually have not met
anyone their age in their local area that have an ostomy or continent diversion
or their condition. They need the Rally
and your donations will help these young people know that they are not alone!
New Ostomy—Encouragement
By Tiny Iwaschevitz
Do not forget:
Even if changing your ostomy system seems to
take forever when you just get home from the hospital, with practice, it will
soon become a very small part of your normal schedule. "Waste disposal" for you once again
will become a private matter . . . honest!
Learn to care for yourself from the start. It is nice to count on others in an
emergency, but you should perform all ostomy care the same as you would if you
had your natural parts. You should not
rely on always having someone around to assist you. Do not make yourself an invalid. This may sound insensitive, but it is meant
to tell you that you are really all right.
If you have physical issues, it is an entirely different situation. However, most of us have no physical issues
when performing ostomy care by
ourselves. Be independent.
Think
of a healthy baby boy when he is due for potty training. He is not happy about it. Boys are the worst. But with gentle coxing, and persistent
encouragement, he finally goes to the toilet by himself. Ostomy surgery is similar. We have to be potty trained all over again,
and just like before, the boys are the worst.
Just like when they had their diapers changed, they like their mamas,
their wives, to do it for them. Just to
let you know, this situation is not that common. Of course, you feel bad because you are sick
and needed ostomy surgery. That is all right,
for a while. You will smile again. I am sure of it. The sooner you are able to begin a healthy
adjustment, the sooner you will come to accept your new life. Most of us want complete independence. We are gifted with a new life, and we are
going to do everything better this time around.
Do go to your ostomy association meetings. This may be the only place where you may talk
to others plainly, openly, without anybody wincing, about any ostomy
issue. Some people have serious health
issues that still exist after ostomy surgery, like heart problems, but we are
here to offer emotional support to you and others trying to be sensitive to
each individual’s challenges. You will
be surprised at the ease with which you can discuss ostomy issues, once you are
here. On the other hand, if you are shy
at first, you may just want to listen to the program and enjoy the topic of
discussion. There is much good advice
shared. Not only that, but whenever we
get together with other people with ostomies, we somehow have a good time. I do not know why, but I always feel better after
I come to a meeting.
Bring family members with you to the
meetings. It is important to have them
understand ostomy issues and potential solutions. It is good to expose them to other people
with ostomies. They may receive some
insight regarding the benefits of living with an ostomy. Let us be honest. If we did not
have surgery, we would probably be dead or near death and/or in terrible
pain. The people that love us would
rather see us alive and without pain. An
ostomy is more our issue that anyone else’s anyway. Nevertheless, it is good to share it with
them. It will make you feel better to
have the support and understanding of someone close to you, and it will help
them to understand your new life.
A special note to people with a new
ileostomy, if you are concerned that your ostomy seems overactive, think back
if you can to the coal stove. The more
coal you put in, the more heat it gave off.
Your ileostomy works in much the same way. The more food you stuff yourself with, the
more active your ileostomy will be!
Remember, you are
your own advocate. It is your life and
you need to understand what is going on with it. If you do not understand something, need more
clarification or information, or are just confused, do not be afraid to speak
up. Be bold and say, “I do not
understand.”
How to Change in a Locker Room
By Renard Narcaroti
You have made the decision to start
exercising and/or swimming after your ostomy surgery. You plan your excursion to the health fitness
facility and suddenly realize that you will have to change clothes in the
locker room.
How are you going to do this in front of all those other men? (I use men because I do not know what goes on
in a women’s locker room, although some of the same situations may exist.) Although you may be proud of your ostomy
surgery, as I am, you realize that you might offend the often-delicate
sensibilities of the other men around you.
I
had the idea of writing this article because of my own clumsy attempts of
changing in a locker room when I started to begin a physical fitness program
after my ostomy surgery. As most of us
become after surgery, I felt very healthy but was weak. However, I was not ready to become an old man
at 50 so I persevered. Most of the
advice I received from others, which I will mention, was of some help, but the solution
I use currently is more effective and so simple.
My
first issue was what to wear under my workout shorts. You see, a 12” pouch will be exposed when working
on an exercise machine that requires one to lie flat. This would be embarrassing as well as
inappropriate. A smaller pouch could
work, but there is still the issue of it flapping around, or worse, coming off
or leaking during an exercise. The
solution I use involves wearing a lycra shorts liner especially made to be worn
under athletic shorts. A liner will hold
the pouch snugly yet offer complete freedom of movement as well as piece of
mind if a leakage should every occur. (I
always prepare for this possibility.
Although in seven years, I have never had at leak while doing any
exercise or sport. This has been true no
matter how physically demanding the task.)
Using a liner is not as easy as it may sound. Most regular men wear these liners well below
the waist; I needed to wear one above my waste, or in other words, at my waistline.
I tried some on at a local sports
equipment store and to my disappointment, none of the liners my size would
fit. They were all excessively small
around my bageebers. It was suggested to
me to try a store that sold large women’s liners and try one of these. You see women wear these liners higher up the
abdomen and therefore they may work for us.
The best solution came from my wife.
One day, she stopped at a sporting store and bought a liner for me that
was much bigger that I would have ever thought to try. However, because it was so big, I could
easily pull it up to my waistline and have it fit comfortably yet snugly where
I wanted it.
Still, how was I going to change my clothes in the locker room without
anyone noticing that I wore a prosthetic?
Some gave me the advice to find a locker in a corner so that I could
face it when I would take off my pants. This
seems fine in theory except when I was trying to quickly take off my pants and
put on a bathing suit. Then all of a
sudden, my pants became stuck half way down and I could not seem to find the
correct leg on the bathing suit to step into.
Some said to change in a toilet stall.
Imagine having your clothes lying on the stall floor soaking up all the
urine there while you put on your pants.
I thought that there must be a better way.
After trying all of these different methods, and to be fair, these all do
have some merit, I discovered a common sense way of changing clothes in a
locker room. I am able to take my time,
and yet maintaining the complete privacy of my ostomy system. After spending a lifetime putting on my
clothes, I realize that I had formed certain habits that most other men follow
as well. When we undress, we take off our
shirts first and then our pants. To
dress we do the opposite, put on our pants first and then our shirts, except in
unusual circumstances like dressing in formal attire.
I
found that if I left my shirt on and then took off my pants, I could leisurely
put on my bathing suit before removing my shirt. When I came out of the pool, after rinsing
off, I would do the opposite, first put on my shirt and then take off my towel
to put on my pants. Nobody would be any
the wiser to my ostomy. I change right
in the middle of a locker room and nobody ever notices. I know that they do not notice because when
there are teens or other children in the room, they broadcast every unique
feature of every man’s body that they see, yet they do not see my pouch. (Of course, you know children are
curious—they are always looking everywhere—and blurt out whatever they are
thinking, it is part of their unique charm.)
Some notice the scar on my tummy, much less scary than it was the first year
after my surgery. Adults pretend not to
notice, but children will ask, “What’s that big scar?”
So
there it is. Simple reversing the paradigm
of how I put on my pants and shirt made changing in a men’s locker room a non-event. I have been using this procedure in all types
of public venues without ever having any man think I had any different parts
from any other man. Even those that go
with me to a gym and change their clothes with me, perhaps secretly hoping to
get a glance at my pouch, are disappointed that nothing is reveled in the most un-private
of atmospheres.
The moral of the story . . . what I really want to communicate by
writing this . . . you can enjoy exercise, swimming and sports without any
worries about embarrassing moments, or by compromising your modesty. And most important, you can get out there and
live your life as you choose. Never let
the gift of an ostomy slow you down or limit you. You may need to change your paradigms, the
way you look at life, but using common sense and determination, you can be
anything you could have been before your ostomy. Stay in the short grass.
Locked Your Keys in Your Car?
If
you lock your keys in your car and the spare keys are at home, call someone at
your home on any cell phone. Hold the
cell phone about a foot from your car door and have the other person at your
home press the unlock button of your key fob (clicker), holding it near the
phone on their end.
Your
car doors will unlock. This saves
someone from having to drive your keys to you.
Distance is no object; you could be hundreds of miles away, and if you can
reach someone who has the other "remote" for your car, you can unlock
the doors.
Dear Ostomy Association
Member,
At the age of twenty I was diagnosed with Crohn’s disease; two years
later I underwent colon surgery. My name
is Leah Humphries and I have created a beautiful line of lingerie coverlets for women with ostomies. My
Heart Ties launched its web site this summer for women who want to feel
truly feminine again. The My Heart Ties coverlet provides security
and beauty for those intimate moments.
The
heart shaped design offers elegance, comfort, ease of use and security for sexually
active women. The luxuriously quilted
and trimmed My Heart Ties coverlet is
simply unlike anything available to female ostomy patients today.
My
Heart Ties coverlet can transform
the way a women feels about herself and her body. This wonderful heart shaped coverlet gave me
back my personal dignity and freedom, and that in itself is a priceless gift.
The
entire collection of My Heart Ties can
be viewed securely online at www.myheartties.com . My
Heart Ties is shipped beautifully gift-boxed and discreetly packaged to
your door. It is our sincere hope that
you will share this information with your support group members. Please visit the website, then email or call
us toll free at 1-888-338-TIES to request free brochures for your ostomy
group.
Exercise after Ostomy Surgery
A summary of newly published
research
There have been some new studies published by
the
Alzheimer’s disease and some cancers. It
can also add years to a person’s life, although the studies also mention that
there is no guarantee that these actions produce the desired results in all
people all the time. Otherwise, everyone
who exercised would never get sick or never die.
What
is also so remarkable is that much of what was thought of as symptoms of aging
are actually symptoms of disuse, especially after the age of 50. This means that health is not only dependent
on age but also how actively one lives his/her life. This is under our own control. Studies dramatically demonstrate that our
bodies are built to become obsolete after age 50; but that a regular, active
lifestyle slows this process.
The most dramatic decline due to getting older is a loss of muscle
strength. It is estimated that adults
lose about six pounds of muscle per decade.
This event in our bodies’ composition will reduce our strength, lower
our metabolism and exposes us to greater risks of age-related disease. The loss of muscle, which is accompanied by a
proportional increase in body fat, can change the composition of a health body
chemistry leading to heart attack and stroke.
Building muscle is relatively easy.
Strength training just 30 to 60 minutes a day, five or six times a week,
for three months can rebuild about three pounds of muscle and increase the body’s
metabolism by 10%. A boost in metabolism
will make a person feel more energetic, more alert and more vital and
alive. The added muscle also has the
positive effect on our other bodily systems, like reducing blood pressure;
improving the ability to use glucose from the blood, which reduces the risk of diabetes;
increasing bone mass and producing gastrointestinal efficiency.
As
an added bonus, regular physical activity can reduce the risk of dying in the
next eight years by about 40%. It also
increases brain function thereby cutting the risk of diseases like Alzheimer’s
by up to 60%. This is especially true
for those of us who have had ostomy surgery and may have multiple chronic
conditions to manage.
Research into how these mechanisms work is finding that exercise has a
tremendous impact on every cell in the body.
It reduces inflammation; increases the blood flow; and even reverses the
natural declines in oxygen efficiency and muscle mass that come with aging. A recent nursing home study published in Mature Fitness was conducted with
residents of an average age of 89 who used wheelchairs. They did just 15-20 minutes of strength
training five days a week. After three
months, almost everyone was out of his/her wheelchair, and one woman went back
to living independently.
The Journal of the American
College of Cardiology published that people in their 60’s and 70’s who
walked or jogged, biked and did strength training for 90 minutes, four to five
times a week for six months increased their exercise efficiency—the ability to
exercise harder without expending more energy—by 30 percent. This compares to a similar group in their
20’s and 30’s that increased only two percent.
Older people improve more than younger people do.
Some of the reasons are thought to be that exercise increases the
mitochondria, which produce adenosine triphosphate—a key substance that muscles
use to fuel energy. Exercise also fights
oxidative damage. During exercise, there
is a huge burst of oxidative agents that injure tissue. However, while exercising, the heart rate
increases resulting in a slower resting heart rate, making it more
efficient. Therefore, exercise reduces
the overall rate at which the body creates free radicals.
There is another benefit of exercise that will soon be publish which
shows that exercise slows down the rate at which our telomeres shrink. Telomeres are DNA sequences, located on the
ends of chromosomes that shorten as we age.
Exercise keeps them long.
Evidence has shown us that daily physical activity can transform a
person’s life. It is never too late to
start. Many people do not start taking
exercise seriously until they reach their 80’s, and become stronger than they
were in their 40’s.
Two Way Mirrors
By Ray Miller
I
think this is quite interesting! I know
in about 30 seconds, you are going to do what I did and find the nearest
mirror.
Do
you know how to determine if a mirror is two-way or not? This is not to scare you, but to make you
aware. A policewoman, who travels all
over the
When
we visit restrooms, hotel rooms, changing rooms, etc., how many of
you know for sure whether the seemingly ordinary mirror hanging on the
wall is a real mirror, or actually a two-way mirror (i.e., they can see you,
but you cannot see them?) There have
been many cases of people installing two-way mirrors in female changing rooms. It is very difficult positively to identify
the surface by just looking at it. So,
how do we determine with any amount of certainty what type of mirror we are
looking at? Just conduct this simple
test.
Place
the tip of your fingernail against the reflective surface and if there is a gap
between your fingernail and the image of the nail, then it is a
genuine mirror. However, if your fingernail directly touches the image of
your nail, then beware, for it is a two-way mirror.
So
remember, every time you see a mirror, do the "fingernail test." "No space, leave the place."
Taking Your Ostomy to Work
The ostomy surgery was a success! You have come home from the hospital now for about two months, are gaining your strength back and are feeling more comfortable with your ostomy. What first seemed like an insurmountable task in the hospital—learning to empty your pouch and change your ostomy system successfully—is becoming easier to manage and service in your own home.
“Maybe this will work out after all”, you think to yourself. One day leads to the next and before you realize it, the weeks have gone by and now it is time to return to work. What do you do now?
While some of your associates may be aware that you had some type of surgery, most will not know much, if anything, about what an ostomy is. Of course, how much detail you wish to share with people at work depends on you alone. Some of us might simply say, “Oh, I was very sick and required abdominal surgery, but the surgery cured me and I am feeling much better.” Others may bore the bageebers out of their fellow workers by going into intimate detail about their new sporty elimination process. One needs to share only that information that is comfortable discussing. Most people are asking about surgery only to be polite anyway. Some may be “nosey” but even they will cool down quickly when you start talking about elimination. You see, they will become very scared that you will ask them about their poop.
It is prudent to let your immediate manager know that you have had abdominal surgery. Realize that very few people will understand the words ostomy or diversionary surgery, so be sure to speak to people in simple, easy-to-understand language so as not to confuse them. It is rarely necessary to go into the technical details about your illness or your new ostomy; people will not be able to picture it correctly anyway. This is one of the reasons we belong to support group. We are able to share details of our most intimate lives with others who understand what we are talking about and the language we are using.
While talking privately with your manager, make sure you reassure him/her that your surgery will not interfere with your ability to perform your job. In fact, mention that you should now be able to exceed his/her expectations of you and for him/her to expect extra-ordinary job performance. We have been told that an ostomy may sometimes limit ones performance, however, we have never, ever heard of such a case, except in situations of chronic self-pity.
Terry Green, a teacher from
Most employers will be accepting of people
coming back to work after ostomy surgery.
In fact, most are very happy that an employee is healthy and able to
work reliably once again. There were
rare instances in the past where people with ostomies have been reassigned to
different positions or attempts made to force them to leave their employer for
no other reason than that they had an ostomy.
This is so rare that we are a bit loath to mention it. But if it does, it is important for you to
familiarize yourself with the provisions of the Americans with Disabilities Act
(ADA), which you can learn all about at the following Internet site www.usdoj.gov/crt/ada/adahom1.htm
. A good resource is Advocacy for
Patients with Chronic Illness, Inc. at www.advocacyforpatients.org,
where you can obtain information, advice and advocacy services. That organization publishes a book entitled, Know Your Rights: A Handbook for Patents
with Chronic Illness. The book also
covers insurance and Social Security issues as well as your rights under
So, now that you are back to work successfully and resuming your duties, it is the time when you need to be prepared for those rare times an emergency may occur; i.e., you have a leak. This is especially relevant to people who are in their first year after ostomy surgery. There are often operator errors that occur and lead to challenging situations of ostomy system failure. You may need to change your ostomy system, or a part of it at work, shopping, during sports, seeing friends and family or whenever. You may have your own ideas of how to prepare and/or plan for these times.
Everyone should have an emergency kit of some sort with you or available to you at your workplace and when you go out. This kit should include a complete ostomy system change—skin barrier, pouch, paste, clip, wipes, disposal bag, etc. A complete change of clothes is also prudent to have available. We would like to dramatize a case we know about. He was playing golf, it started to rain and his shoes became completely soaked. He was going for a snack after golf and was able to change his socks and shoes from his emergency kit. What? Did you think this was an ostomy example?
When members of the UOAA General Discussion board were asked recently how they plan for and deal with the unexpected at work, those times when a quick change is in order, here is some of what they had to say. Maybe some of their experiences will be helpful to you in planning your strategy.
Linda Penelli from
Mary Miller, an accountant with an ileostomy keep spare ostomy supplies in her purse, in her gym bag with exercise clothes and in a locker at work. “My employer put personal lockers in the ladies restrooms. That has been a convenient place for me to store my supplies. I also keep some aluminum foil with my supplies, which I would use to tightly wrap around a used skin barrier and pouch if I ever needed to discard them discretely.”
Caroline Polochewicz shared “My two-year old ileostomy is pretty much a non-event at work. Only one time did I had an “opps” in the bathroom due to being inattentive. I cleaned up without anyone noticing.” She keeps spare ostomy supplies in her briefcase and exercise bag. She has a change of clothes at work, but has never had to change either her clothes or ostomy system at work. She feels that she would probably just go home if that ever happened. Caroline had more narrow escapes with having to rush to the toilet with Crohn’s disease before her surgery.
Billy-Ben Williams from
Clem Hopper—who has a transverse colostomy—shares that he typically needs to empty his pouch once during every workday. He uses a closed-end pouch and often empties it late in the morning. “The biggest challenge is that I work in an office building with multi-stall restrooms, so having someone else in the stall next to me is a real possibility. I try to avoid lunch hour and the morning/afternoon break times. In addition, I have never had a serious leak that made it to my outer clothing. I have gotten a t-shirt stained a couple of times, but that is about it. I have made a skin barrier change a few times to head off a potential leak situation. However, that was when I was still a newbie. That never happens to me anymore.”
One important piece of advice we obtain from most experienced people regarding ostomy management is this . . . when making a system change, or just emptying your pouch, take that extra few seconds to do it perfectly. Never rush. Pay close attention to what you are doing. Accidents usually happen during times when we are in a hurry. Zippers can be caught on the pouch and tear a hole in it, the pouch can be yanked off when pulling up your pants or panty hose too quickly or the pouch clip can drop in the toilet. Make a deliberate effort when managing your ostomy to completely eliminate mistakes.
The UOAA General Discussion board at www.uoaa.org is a great resource when looking for specific advice about taking your ostomy to work with you—instead of leaving it at home. You will find many people there willing to share what has and has not worked for them in all aspects of work. This includes dealing with questioning co-workers, clothing choices, noise reduction tips and the like. No question or concern is off-limits on this discussion board. However, if you need medical advice, see you doctor or WOC nurse. We can share our experiences, but we are not medical professionals. Moreover, each of us talks from our own perspective, so read the responses with a grain of salt.
With the advances in ostomy equipment over that past decade—gargantuan over the past 25 or 50 years—people with ostomies are involved in every imaginable occupation. We have never heard of an occupation that people with ostomies are not doing. This is a bold statement, but it has never been contradicted. Whether firefighters, teachers, mechanics office workers, actors, retailers, athletes, body builders, belly dancers, etc. there are people with ostomies performing all kinds of work and enjoying fulfilling careers.
A person with an ostomy was once asked when taking a trip, “Are you really going overseas with you ostomy?” She replied, “Well, I cannot exactly leave it at home.” Just as she successfully took her ostomy with her halfway around the world, you too can take your ostomy to work. Be brave. Be inventive. Be flexible. And most of all, be grateful for the health you now have that allows you to take your ostomy to work.
Choosing Wellness
Pursuing wellness in our lives—physical, emotional and mental wellness—is
a choice that we must make every day. To
be honest choosing to be well can be hard work.
Some days it can seem easier to eat whatever we want, remain inactive,
let our minds fill with negative thoughts and neglect our relationships.
It
takes a conscious effort to eat a healthy diet, take proper medications—if
needed, exercise regularly, concentrate on positive uplifting thoughts and
cultivate meaningful relationships.
There are two parts in all of us, the one part that just wants to accept
things as they are regarding our health and the other part that wants to live
better, to be well and thrive. We must
decide which part will win out. We need
to choose wellness.
It
is true, there are many people who would give anything to be physically well .
. . but cannot. Sadly, it is also true
that there are people who could be physically well but choose not to be. Being well, if possible in our own personal
life, involves choosing to do so and working to achieve the goal of wellness.
This is especially true of some of us that were cured though ostomy
surgery, like those who had ulcerative colitis.
One goes into the hospital usually close to death and within two weeks
is at home walking around healthy. It
seems like this would be simply wonderful, which it is. However, we become attached to our
illnesses. It is physiologically
wrenching to change into a healthy person so drastically. We need time to adjust. We need to make the decision to be happy
being well.
Choosing to be well demands so much from us as well as testing our inner
resolve. It is a goal we must really
have the desire to achieve. Not choosing
wellness can leave us tired, overweight, irritated, depressed or lonely. In those conditions, we are unable to service
others and look beyond our own needs to see the needs of those around us. When we are working to be well, we will have
more opportunities to help others and really enjoy our new life.
Having come through ostomy surgery of one form or another—and many cases
the disease that led to surgery—we all know what it is to be sick. Now in many cases we have been given a second
chance at life by undergoing ostomy surgery, the time has come for us to choose
and work toward wellness, as much as is possible.
Indeed, the path towards wellness can be challenging at times, but it is
worth every step we take on that path to reach our goal. Our steps may be small at first, such as
choosing the right foods to eat, beginning an appropriate exercise program or
enacting some other sort of change in our lifestyle that will lead to wellness.
However, the important thing to remember is to take one-step at a time,
realizing that each positive step taken towards wellness is one-step taken
further away from sickness. While
physical wellness may not be completely possible for some people, emotional and
mental wellness is very crucial to one's overall well-being and should not be
neglected. Stay connected with your
friends and family. Read inspiring and
uplifting books. Write letters of
encouragement to others not as fortunate as you are.
There is a saying, “Look for the beauty in each day.” Choose wellness in your life. You will see and enjoy beauty in each day as
never before.
Secrets You All Know About QOL
By Gail Meyers, CWOCN
We
wanted to present to you an outline of the magnificent presentations given by
Gail Meyers, the WOC nurse at Centegra Hospitals in McHenry and Woodstock, at
our September 2006 General Meeting. Gail
developed each of these subjects in a special way offering examples and
inspirational stories on each topic.
Take some time and see if you can also think of ways to take advantage
of each of the “Secrets.”
Keep ostomy management simple
Cultivate humor
Extend kindness to someone every day
By yourself
Honor your body
Seek help when you need it
Focus on staying healthy
Enjoy your life
Explore recreational activities
Learn something new
Relax
Breathe
Forgive
Accept your feelings
Notice beauty
Honor your spiritual life
Concerns with the J-pouch
By Dr. Tracy Hull,
Patients with ulcerative colitis (uc) who were treated surgically previously
underwent a total proctocolectomy with permanent ileostomy. However, in the late 1970s, when the pelvic
pouch (J-pouch) procedure was first introduced, the surgical approach to uc was
revolutionized.
The
pelvic pouch has now become the “gold standard” in surgical treatment. Although the operation avoids a permanent
stoma and usually improves the patient’s quality-of-life, it does not restore
the bowel function to normal.
Patients
can expect to have many stools per day—as few as two or three for the fortunate
few and as many as 40 for the less fortunate, with the average being around
eight—and these stools are pasty to watery in consistency. As with any bowel operation, patients
experience many changes, both short- and long-term. This article will discuss some of the
potential long-term problems that patients with a pelvic pouch may experience.
Diarrhea:
The function of the pelvic pouch will change over the first year—improve as the
pouch stretches and becomes larger after the ileostomy closure. However, there are still some people who have
20 bowel movements or more, daily. Dietary
changes may help these people to decrease the number of bowel movements. Foods, which have been found to help decrease
the water content of the stool, may help to reduce the number of trips to the
toilet.
These
foods include applesauce, bananas, rice, creamy peanut butter, potatoes,
cheese, marshmallows, pretzels, toast, yogurt and tapioca pudding. Bulking agents such as Metamucil, Citrucel,
Fibercon or Konsyl also help thicken the stool.
These
products are ingested with little fluid to allow extra fluid in the
gastrointestinal tract to be absorbed. A
doctor to slow down stools sometimes prescribes medications such as Lomotil or
Imodium. They should not be used without
your doctor’s approval. Limiting the
intake of fried and fatty foods and milk products may decrease diarrhea. Reaction to foods varies with each individual,
and other foods may be found to increase the amount of stool produced or change
the consistency.
Bowel
obstruction and emptying concerns: To construct the pelvic pouch, the small
bowel is stretched, along with the blood vessels that provide blood to the
pouch, in order to reach the anus. This
stretching may predispose a patient to bowel obstructions from scar tissue,
twisting or kinking; surgical intervention may be required to relieve the obstruction. Another concern, which may lead to problems
with pouch emptying, is a narrowing or stricture at the pouch-anal joint
(anastomosis). This is diagnosed by an
exam of the anal area. Strictures may
cause symptoms that result in a progressive need to strain more and more to
move one’s bowels. Usually, dilation
solves the problem and rarely is an operation needed to correct the problem.
Pouchitis:
Pouchitis is a non-specific inflammatory condition of the pouch. The cause is unknown, but it occurs much more
frequently in patients who have a J-pouch for IBD versus those who have one for
familial polyposis. Patients are at risk
to develop pouchitis over their entire lifetime, as long as they have a
functioning pelvic pouch. For some
patients, pouchitis is an isolated event, but others can experience multiple
episodes or even continuous “chronic pouchitis.”
The
symptoms are similar to a mini-attack of uc.
Patients report increased bowel movements, pelvic pain, abdominal
cramps, malaise, fevers or blood in their stools. However, it is common for patients with a
pelvic pouch to notice blood on the toilet paper with normal function of the
pouch and yet not have pouchitis. The
most common treatment is Flagyl (metronidazole) 750 to 1500 mg daily for 7 to
14 days. This is effective about 85% of
the time. Improvement is usually seen
within 48 hours.
Emergency Card
Contributed By Fred Shulak
In
some recent correspondence from the UOAA, they suggested that people with
ostomies carry medical information on their person in the event that they require
emergency care. In as much as so many of our members are seniors,
however, an emergency can befall anyone at anytime and in a multitude of places,
I thought you would like an outline of what they suggest.
Emergency
Room Information for Ostomates
a) A brief medical history of when and why the
ostomy was performed as well as any other important medical information
b) List each of your doctor’s names, address’s
and telephone numbers
c) List the medications you take, their
strength, dosage and reason you take them.
Note: Most pills with an enteric
coating will pass through the stomach and into the small intestine within 45
minutes. They will end up in the ostomy
pouch of a person with an ileostomy almost intact.
d) List your allergies and the allergies you
have to all know medications
e) Provide your ostomy data, i.e., ostomy type,
stoma size, supplies used
f) Provide insurance data, i.e., your primary
provider, certificate number and telephone number; supplemental coverage
certificate or policy number
g) In case of emergency notify: