September 2004
Last
Month's Meeting
It was a
beautiful day to have our General Meeting.
We had so many exciting presentations planned that we could not get to
them all. We are in the mist of creating
a new interactive environment in which our members may take a more active
role. There is more to come.
Our
featured speaker was Bernie Bailey, CWOCN from Resurrection Hospital. This is the 15th year in which she
came to visit us. Bernie spoke about an
ostomy issue we all are concerned about, peristomal hernias. Many people suffer with these types of
hernias and should see their doctor regarding them. Some may be serious, becoming life
threatening and requiring surgery.
However, the majority of peristomal hernias do not cause the patient any
more than minor discomfort and may be managed effectively with a variety of
support belts made just for this.
There are
three ways for us to reduce the incidence of peristomal hernias.
·
Do not lift anything heavy. This will depend on your current physical
conditioning, but generally, anytime you strain yourself you risk the chance of
tearing an abdominal muscle, which may lead to a hernia.
·
Exercise your abdomen. Never strain yourself when doing an abdominal
exercise. Isometric exercises work very
well for us and offer flexibility when they may be utilized. For instance, when you take your daily walks,
you simple have to hold in your stomach—as much or little, as you are
comfortable. This simple exercise will
tighten your stomach and reduce the chance of hernia.
·
Keep your weight in the normal range. That means that people with ostomies that are
overweight have a higher incidence of hernias.
Mike Cherry
from Hollister, Inc., along with an entourage of colleagues, set up a
conference call with their Fairfax, VA manufacturing facility. They wanted to obtain user response—our
thoughts and feeling—on how full we allow out pouches to fill before emptying
them, along with some of the other product challenges we meet. We have always encouraged manufacturers to
communicate with us. We know that we
must work together because we are in a symbiotic relationship. We are their clients, and they are our source
for ostomy systems. I think we did well
today and hope both of us benefited from the interaction.
In
addition, Mike is creating a professional quality documentary of the Friends of
Ostomates Worldwide (FOW) headquarters located in Glenview. He shared with us the first cut of the work
in progress. The star of the film was
Joan Loyd. Joan gave us a brief tour of
the main operation of FOW dramatizing the fundamentals of this importance work,
which is being done for the poorest people with ostomies in the forgotten parts
of the world. Joan narrated the tour
without a script or prompts with an incomparable dignity, which will surely
advance the mission of FOW.
We have
changed the date of our board meetings.
They will now usually be held on the first Wednesday of the month in the
10th floor East Dining Room or one of the adjacent rooms.
We would
like to recognize two members who accepted the challenges of managing two
important committees. Gayle Gilchrist
has taken on the duties of program chair, and Sue Oldham assumes the newly revised
role of membership chair. We are
grateful that these individuals with such excellent credentials, Gayle and Sue,
are both working professionals with successful backgrounds managing people and
projects, stepped up to assume Chapter leadership. We are all volunteers at our Chapter. Unless people like Gayle and Sue, who have
high-level skills, assume the responsibilities of Chapter leadership; we would
not have a viable UOA Chapter.
Just a
reminder, our Chapter provides much more than our share of the leadership to
the national UOA organization. Some
brief examples are, Joan Loyd, who was and still is instrumental in continuing
the good work of FOW by accepting the huge task of setting up and managing the
world headquarters right here in Glenview; Marilyn Mau, who has been a past UOA
president, was the originator of the Youth Rally and is currently Secretary of
FOW; Mario Pardo, who has accepted the responsibility of Treasurer for national
FOW and is currently managing the warehouse; Dave Rudzin, who is assuming the
officers position of national Treasurer for UOA next month and is currently
chair of the 30+ network. Plus, many
others, Gary Ponti, Mary Jane Wolf, etc., have come from our Chapter to assume
important leadership roles with national.
We’d like to
thank all of you who brought bakery goods to our hospitality table. The lucky winner of the 50/50 was Gerri
Hesselberg, who came to visit her father—our member—at Lutheran General. She told me at the beginning of the meeting
that she came to play the 50/50. Some
luck! The consolation prize went to Lu
Rayman, a longtime member of our Chapter now living in the western U.S., who
returned to Chicago and paid us a visit.
Remember: The Lake County Chapter of UOA is having
their monthly meeting on Saturday, September 18 at 10:00 a.m. at the Hollister
Inc. home office located in Libertyville.
Call Alice
at 847-623-9829 for more details.
President’s
Message:
Recently, it has come to my attention that there is a growing lack of
communication in our lives. I find this
amazing since our lives are filled with all sorts of new high tech
communications! In only the last ten
years, we now have available to almost everyone, many ways to communicate with
others. We have cell phones, text
messaging, e-mail, instant messaging, chat rooms, web sites, wireless phones,
fax machines, pagers and probably many more devices that I do not even know
about. Moreover, even in this high tech
world, people are not really communicating.
Yes, we use all these modern conveniences to let others know what we are
buying at the mall, or what to pick up for dinner, or what time to pick someone
up from school ... but do we really communicate with them?
I am probably one of the biggest
offenders. I may send my friends lots of
jokes or forward an e-mail that I think they would like, but do I ever send
them a real letter … usually not. I am
always jealous of the few people who, no matter what the content of my e-mail,
always respond with a short note of thanks for sending it to them. They usually comment on something about the
e-mail, or just thank me for sending it to them, but they always respond. I wish I would take the time to do that. It really does make an impression on me. It lets me know that I am worth their
consideration and a few seconds of their time.
Sometimes, if I get an e-mail from someone whom I have not spoken to in
a while, I will respond with a short note, ask how he or she are doing and what
is new in their life. Some of them just
never respond back. Then I wonder, is it
because I have not bothered to keep in touch with them in a while? Am I only a name in their computer’s address
book? More than likely, it is not
personal, but that person is giving out the message that they are just too busy
to answer you. So, eventually, I stop
trying to communicate with them at all.
Even if you are not into high tech, how long has it been since you sat
down and wrote a letter to someone? Most
of us enjoy getting mail (as long as it is not bills or junk mail), but do we
take the time to do it ourselves? Most
people say they do not have the time to do it, but it does not have to be a
three-page letter—just a short note to say “thinking of you”. Even an e-mail greeting card that takes a few
minutes for you to compose would be nice.
Just letting people know you are thinking of them could brighten up
someone’s bad day considerably.
So the next time you have five extra minutes, write someone a short note
(or longer if you have the time) or send them a personal e-mail letter, or call
them up and ask how their days is. Take
advantage of all the forms of communication that we have available to us to
keep in touch with your friends and those you love. Let them know you are thinking about
them. Keep open those lines of
communication—they are your lifeline to the people you love.
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
.
September 18—Lake County Chapter Meeting. The Lake County Chapter is going and growing with monthly
Saturday meetings at 10:00 a.m. at Hollister Inc. home office in
Libertyville. The September 18th
meeting will include a “Round Table Discussion” session. For more information, participation or
directions call Alice at 847-623-9829.
September 22—Bari Stiehr, CWOCN from Alexian
Brothers Hospital will share ostomy insights.
Maureen Conway—we rescheduled her from the August meeting—from Sterling
Medical Services will present an overview of the ostomy products and services
currently available. Plus, the long
awaited reports from the UOA Conference.
October 27—Barbara Gacki, CWOCN from St.
Joseph Hospital will be here for questions and answers.
December 1—Our Gala Holiday Party
Celebration featuring special guest entertainment.
UOA President’s Award
It is
with great pride that we announce that a member of our Chapter was awarded the
UOA President’s Award at the UOA Convention last month in Louisville.
Marilyn
Mau was presented this award for her untiring efforts to establish, design and
manage the UOA Youth Rally. Marilyn’s
initiative has provided education and encouragement to thousands of children
dealing with the personal challenges associated with ostomy surgery. This award is an inspiration to us all, and
it is long overdue. We wish to sincerely thank you Marilyn for all your good
work in the past as well as your present contributions to UOA. Be sure to say hello to Marilyn the next time
you see her at a Chapter meeting.
Friends of Ostomates Worldwide
Our world
headquarters is located in Glenview, and is run entirely by volunteers. We continue to receive record numbers of new
shipments of ostomy supplies that have been generously donated by Americans all
across the nation. They are there
waiting to be repackaged and sent out to needy people with ostomies. Our next donations are scheduled to go to
South American and to the sub-continent of Africa. Won’t you please help?
In August, we
arranged a special evening session to help relieve the congestion in the
warehouse. Over a half dozen people
answered the call and showed up to help.
We packed almost two skid-loads of supplies in two hours. Our volunteers are good.
Mike Cherry
has organized a group of Hollister, Inc. employees who come on the third
Saturday of the month in the morning.
Mario Pardo volunteers here Monday, Wednesday and Friday from 9 a.m.
until noon. Joan Loyd covers Tuesday and Thursdays.
Be sure to
keep updated on the results of all FOW activity by viewing their Internet
site. It may be reached by going to our
site at www.uoachicago.org
, going to “Useful Links” and clicking on the FOW site...easy.
When you would like to
invest your talent one day a month helping us on a weekday morning in our
clean, well-maintained facility—when we actually do our shipping and
receiving—please call Joan at 847-724-8002.
Crohn’s Disease
By Sue Oldham, RN, Chicago’s North
Suburban Chapter of UOA
Many people
with ostomies suffer from Crohn’s disease, and I am one of those people. I was diagnosed in 1986, and in 1995, I had
my colostomy done. My goal in this
article is to acquaint you with the group of diseases called inflammatory bowel
disease (IBD), which includes Crohn's disease.
Crohn's
disease is a sister disease to ulcerative colitis. These diseases make up what is
called IBD. There has recently also
been a third classification of IBD found, that of indeterminate colitis. These patients, who make up about 10% of
those with IBD, cannot be fully classified as having either Crohn's or ulcerative
colitis. There are about one million
people known to have IBD in America alone.
IBD is a disease made up of flare-ups, when the disease is active, and
remissions, when the disease seems to go into hiding. There is no medical cure for IBD however; new
treatments for managing these diseases are appearing all the time.
Scientists are
actively working to discover what makes these diseases tick. They feel there
are two main factors: heredity and the immune system. There is
definitely a hereditary link; IBD has been shown to run in families. The immune system in a person with IBD is
thought to turn somehow on itself. The
body basically attacks the digestive tract and doesn't know how to stop. The reason why this condition exists is
probably the hottest area of research right now. Some scientists also have been thinking that
substances in the environment may play a part in triggering the
disease.
Ulcerative colitis confines itself to the large intestine. When it is active, normally only the mucosa
(inner lining) of the colon is inflamed and/or ulcerated (having open
sores). When a person with ulcerative
colitis has a proctocolectomy, which is basically surgical removal of the large
intestine, he/she is cured. Make no
mistake. IBD can be deadly if not
managed with adequately medical treatment.
Untold millions have died prematurely because of direct complications
from the symptoms of IBD.
Crohn's
disease, on the other hand, can be found anywhere in the entire GI system, from
mouth to anus. This disease can affect
the entire thickness of the intestine.
Two of the complications are perforations and fistulas, where a hole(s)
or channel(s) develops from the intestine into the peritoneum, to the outside
skin or to other organs causing major problems.
This disease
cannot be "cured". Most people
with Crohn's disease take medication every day for their entire lives to try to
keep their Crohn's under control. Many
also eventually have surgical procedures done to take out areas of disease; it
is estimated that about 60 to 75 percent of patients with Crohn's disease will
require some sort of surgical procedure in their lifetime.
The good news
is that people with Crohn's disease can and do lead full lives. I am a registered nurse, have been working
full-time and raised a family while battling this disease. I am not alone in this. Many people in our UOA Chapter have the
same experience. We can only hope that
someday soon scientists will unlock the key and make a discovery that can cure
IBD.
Avocados Boosts Absorption
Ohio State University research shows avocados
act as a “nutrient booster" that helps the body absorb cancer-fighting
nutrients. Adult men and women ate salads and salsa with and without fresh
avocado. Subjects who consumed lettuce, carrot and spinach salad containing 2.5
tablespoons of avocado absorbed 8.3 times more alpha-carotene and 13.6 times
more beta-carotene—which helps protect against cancer and heart disease.
The subjects
also absorbed 4.3 times more lutein, which contributes to eye health and
protects against macular degeneration, the leading cause of blindness in the
elderly.
Stay Limber for Life
Adapted By The
New Outlook
Whoever you
are, whatever you do, stretching needs to be a
fundamental part of your everyday life.
In the simplest terms, there are two primary reasons to stretch. 1) It is good for the body, and 2) It is good
for the mind. Nevertheless, let us take
a closer look at how it all breaks down.
·
Stretching
will make you stand taller. Stretching
helps to prevent age related height loss.
In addition, stretching can help maintain proper joint alignment,
leading to a more erect posture at any age.
·
Stretching
will make you feel better. Stretching is
an excellent way to relax and reduce stress.
Many people stretch with intensity, holding extreme, overextended
positions. However, proper stretching at
a lower intensity can be a therapeutic way to relax and naturally vent anxiety.
·
Stretching
decreases the chance and/or the severity of injury. Stretching makes our tissues more elastic and
less likely to tear or strain. It is not
the cure-all to injury, but it is one of the most important injury prevention
measures you can take.
·
Stretching
helps relieve age-related muscle stiffness.
As we age, muscle stiffness makes it more difficult to perform routine
daily tasks. Regular stretching can
combat age-related stiffness by helping to keep our muscles and other tissues
elastic.
·
Stretching
focuses the mind. By spending time
stretching before a workout or competition, we can prepare mentally for
upcoming physical activity. This allows
us to focus on the task ahead and commit ourselves to a specific goal, be in
competitive or personal.
·
Stretching
could save your life. It is true;
stretching prepares the body for the increased demands of physical activity by
elevating the heart rate and increasing blood flow. This can prevent a stroke or heart attack
caused by an immediate strain on the heart and circulatory system.
Whether you are just beginning an exercise program or
continuing with an existing one, stretching should be an essential part of your
daily routine. You know you need to
improve your flexibility when you truly believe a good stretch is fully
extending the footrest on your favorite recliner. The symptoms of poor flexibility:
·
General
stiffness
·
Aches
and pains
·
Sharp
pains in full range of motion activities
·
Discomfort
in sitting for a long time
·
Difficulty
getting out of bed in the morning
·
Muscle
discomfort in the morning that improves over the course of the day
·
Tension
headaches—usually caused by neck and back stiffness
·
Chronic
isolated muscle injury
·
Feeling
of general muscle fatigue
·
Joint
pain
If you do not know how to stretch, you can find
stretching routines on the Internet; your local health club; your
chiropractor—they are experts on customizing exercises for your exact needs;
etc. Moreover, many private fitness
facilities teach Thia Chi—a Chinese form of exercise suitable for people
of all ages. Students learn a series of
graceful, flowing movements that look a bit like karate in slow motion. Yoga is a great way to increase strength,
muscle tone, and yes, flexibility. Yoga
is an excellent way to relax and, at the same time, improve your
flexibility.
Some
stretching dos and don’ts
Do...
·
Stretch
at least four times a week
·
Stretch
only to the point of mild discomfort
·
Hold
each stretch for 10 to 30 seconds
·
Repeat
each stretch 3 to 5 times
Do not...
·
Bounce;
this tightens your muscles
·
Hold
painful positions; this can tear your muscles too much
·
Exercise
an injured area without consulting a medical professional
·
Hold
your breath; this starves your muscles of oxygen
Some other important reminders: Do not stretch cold—starting a workout with
intense stretching can be dangerous.
Before you stretch, do a couple of minutes of light movement—a
two-minute walk will work. Don't sweat
it—young people are generally more flexible than older people are, and women
are generally more flexible than men are.
So know your limits, and set realistic expectations.
2004 UOA Convention, selected topics
It was repeated over and over again that
when you have concerns about your ostomy system performing to your
satisfaction, “Don’t Suffer in Silence”.
There is a plethora of resources available to people who seek them
out. Not only are there ostomy nurses,
but there are also manufacturers, your local UOA chapter, UOA conventions as
well as your personal physician. If you
are having problems with your ostomy system that you feel lessen
your quality-of-life...don’t suffer in silence.
UOA is evolving as an organization. Our original primary mission was to be all
the things you think of when we say we are a “support group”. We are becoming an education group.
The biggest reason for people with
ostomies going to the emergency room during a vacation is dehydration. The signs of dehydration very often imitate
those of a blockage; i.e., abdominal pain, nausea, dizziness.
All surgical operations have
complications. Some may be very small,
such as, requiring the patient to increase his/her circulation by walking for
20 minutes at a time, six periods a day.
If one lives long
enough, all people with an ostomy will experience a peristomal hernia. Of course, you may have to live to 120 years
old to reach this spot. In addition, if
one has an ileostomy at age 30, stays in good shape, and lives a prudent life
style, the probability of having a peristomal hernia at age 70 is only
20%. People with colostomies have a much
higher occurrence of peristomal herniation.
One main reason is that a larger hole is made in the abdomen for a
colostomy, which means the abdominal wall is compromised more than with a
urostomy or ileostomy, which only uses the much smaller ileum to penetrate the
wall around your stomach.
“No doctor anywhere...no matter how
brilliant...has all the right answers”, Dr. David Beck, University of
Louisiana. Seek additional medical
opinions on serious medical issues.
Believe me; all the doctors said that they want their patients to seek
“second opinions”. They will not be
insulted. The great majority of doctors
truly want to perform only the best medical procedures that will provide the
best results for a patient.
If you are over 65, you should regularly
see a CWOCN for check-ups and to resolve ostomy issues. Medicare pays for this benefit.
Different brands of pouches will not fit
on any barrier except the one they are manufactured to fit. A ConvaTec barrier will not securely tighten
to a Hollister pouch. They may seem to
fit, but upon close examination, you will see that the ridges and thickness of
the plastics are different. Some of us
that do mix brands do so holding them together with belts and cements. This may be an acceptable method for
you. Just be aware that unless you use
these extra ordinary methods, the pouch will fall off.
Chagos’ Disease is caused from a parasite
transmitted by the bite of certain types of Bolivian beetles. The parasite is only in South and Central
America. It probably will never be in
North American because our environment is too hostile for it to survive. The protozoan goes into the blood stream and
about 10% of the victims develop deterioration in the nervous system, the heart
or the colon. About 100 million people
are at risk for this, and about 20,000 die each year. If it attacks the colon, surgical removal is
usually required to save the patients life.
The pictures we saw of removed colons shocked us. They had 20-inch diameters in places and
weighted 25 lbs. The people in Bolivia
have a form of socialized medicine to pay for their ostomy supplies. But, the ostomy supplies they receive consist
of a box of Saran Wrap and some masking tape.
FOW sends supplies to Bolivia.
The pictures we saw of the boxes we personally packed sitting next to
these poor people was quite an inspiring and emotional experience.
There have been over 1000 small intestine
transplants performed. There are no
plans anywhere to develop large intestine transplants because we can live quite
well without a large intestine.
Sepra Film is a new product that surgeons
are beginning to use during abdominal surgery to wrap around the intestines to
reduce the incidence of adhesions.
Probiotics are seen as being the best hope
for people who have continent fecal diversions to avoid inflammatory outbursts
like pouchitis. There are more bacteria
in a small intestine without a colon attached than there are with one. There seems to be more of a need for
probiotics for people without a colon.
The reason seems to be the need to reinforce the flora in the small
intestine because of the slower transit time that develops because of the change
in the digestive process.
There
is currently research and trials being made on creative ways to provide options
for people with diversionary surgery.
Some of these include:
·
An
automatic irrigation system for people with colostomies that would reduce the
time it takes to irrigate from 45 minutes or longer to about 15 minutes total.
·
Stoma
plugs are in experimentation to help make ileostomies continent. These things still do not work at all, but
research dollars are being used to experiment with this option. Hollister, Inc. has told us that they have
stopped work with stoma plugs, but ConvaTec has poured money into research with
no success.
·
There
has been some success with artificial sphincters. They work somewhat on people with fecal
incontinence that have strong, healthy sphincter
muscles. There are also experiments on
pigs where the entire anal canal is removed, just like on us with permanent
ostomies, and an artificial sphincter is used to achieve continence. There has been minor success in this
area. The artificial sphincter is really
a very simple device...a steel band that wraps around the sphincter or
intestine. A real sphincter is
tough. The device allows it to open and
close at will. The problem with using it
just on intestine is that it wears through the intestine with repeated opening
and closing.
·
The
University of Iowa is experimenting with a parasite whose eggs are swallowed
every day for 12 weeks by people with Crohn’s Disease. They are not exactly sure what the bug does
but it is theorized that it stabilizes the inflammatory response. So far, out of 26 patients that have tried
this, 24 have achieved remission of symptoms.
Reasons for Skin Breakdown
By Marvin M. Schuster, M.D.
Skin breakdown is one of the most common problems people with ostomies
encounter, but can be avoided by proper care and management. Different problems
arise for people with ileostomies, colostomies, or urinary diversions, but no
matter what the disorder or whom it affects, prevention is always much easier
than treatment at late stages.
For this reason, the person with an ostomy should give particular
attention to the state of the skin and take immediate steps if he or she
notices anything unusual. This is
especially important because good, healthy skin makes for a better fitting
appliance, which, in turn, makes for a good, healthy skin. Skin breakdown may be due to one of three
causes:
Allergy:
An allergy may be due to the adhesives, cement, or the material of which
the appliance is made. Fortunately,
Karaya—used in many barriers and paste—itself is so inert, that it is extremely
rare for a person to be allergic to it.
Other skin barriers, like ConvaTec’s Stomahesive or Durahesive and
Hollister’s SoftFlex or Flextend, are specifically designed for skin
comfort. In addition, many suspected
cases of allergy in fact are simply skin sensitivities to certain
products. For example, many people do
not wear a wool sweater directly on their skin because it is itchy; yet, they
are not allergic to wool, just sensitive.
If there is any suspicion of allergy, the person with an ostomy should
test whatever material he/she seems to be allergic to on a part of the body
remote from the stoma, say the chest or arm for example. One can do this by putting a small amount of
tape or cement or suspected material in a patch in the test area and observe
for further effects. Should the skin break down on the test area,
obviously, it will not interfere with adherence of the appliance.
Sometimes one can eliminate allergic response simply by switching to
another brand of ostomy supplies.
Becoming sensitive to one type of barrier happens to many people even
after years of using a product with excellent results. Again, this is best determined by trial,
using the patch test as suggested.
Exposure of Skin to Digestive
Enzymes:
This problem is more common to people with an ileostomy than a colostomy
or to people with urinary diversions, since the ilea
excretions are rich in digestive enzymes whereas the other two fluids are
not. Prevention also begins with a
sufficiently protruding stoma, which may be achieved by using a convex
barrier. If skin breakdown is present,
there are a number of substances, which can be used to promote healing, and an enlightened
physician or ostomy nurse can handle this problem. ConvaTec and Hollister, Inc. both have
barrier rings, strips and pastes designed specifically to protect the skin
against digestive enzymes.
Infection with Bacteria or
Fungus:
This problem often gets started from one of the other two problems,
especially when there is a poor fit to the appliance, and leakage occurs. If you have little red raised bumps under
your barrier, there is a good chance you have a fungal—also called a yeast
infection. Two very good agents for
handling this situation are micro-granulated fungal powders like Mitrazole or
Mycostatin powder, which may be purchased without a prescription in Illinois.
A steroidal skin prep, like Desonide lotion or
Kenalog spray—that removes itching like magic but requires your doctor’s
prescription—will help with the healing of certain types of infection. Lotions and sprays may interfere with the
adherence of an ostomy appliance on depending on one’s skin type and the ostomy
system used—so be careful.
By Pat Murphy, CWOCN
Each of us can
make life better—for ourselves and for those we meet who might someday have to
face ostomy surgery for their own good.
I’d like to suggest two ways to do this:
First, support
the United Ostomy Association—not only financially but especially by offering
your talents as a volunteer with your local UOA chapter. Your involvement keeps
the chapter strong and makes it interesting and fun.
Second, become aware of the image of an
ostomate that you project to others. Be
sure it’s a positive one! Whether an
ostomate or not, everyone at some point in life chooses between life and death.
You can tell which one people have chosen by observing their attitudes and
lifestyles. We are advised to choose life.
And that involves projecting a positive image to others.
President
Bush’s brother, Marvin, said in an article that his ostomy surgery had given
him a “second chance” to live. What a marvelous
thing to be able to have—a second chance!
To be able to live, enjoy family, friends and work or play, is the
greatest joy. Marvin Bush wrote how
grateful he was to have a second chance to live.
We should all
feel this way, because we have chosen life. Sometimes, though, we can get on a
negative track and focus on our problems instead of being grateful. Look at
yourself today. Have you been focusing on your complaints and problems? What
kind of image do you project to others?
Here’s a simple
plan to help us all become more positive and project a better image: Watch yourself for a few days; see if
negative thoughts and feelings keep repeating. Replace negative thoughts with
thankful thoughts. You can’t just remove negative thoughts; that leaves an
empty spot, and they’ll just come back.
You must put
positive thoughts in their place. Express your thankfulness to those around
you. Be optimistic in what you say,
instead of saying, “I’m so busy, I don’t know what to do,” for example, you
could say, “I have so many interesting challenges I don’t know which one to
take on first.” Make thankfulness a habit.
If you do, you will project a wonderful, powerful, positive, attractive
image to all you meet. This will help
others to choose life—or an ostomy, if need be—in their future.
Too
Much of a Good Thing
By Wanda Herdzina, CWOCN
Do you need an
hour and a half to change your ostomy system?
Does your stock of supplies resemble the storefront of the local
pharmacy? Do you need a road map to
remember what product goes on first, second, etc.? If so, then you may be the victim of the “too
much of a good thing” syndrome.
Occasionally,
an individual will come to a stoma clinic carrying a large sack with a vast
array of skin care products. He/she
explains, “All these items are needed in order for me to apply my
appliance”.
Unfortunately,
the reason he/she usually needs assistance is due to a problem with the
adhesion of the barrier—usually due to scars, skin folds or weight changes;
skin irritation or skin breakdown. One
particular gentleman who comes to mind was utilizing a special skin cleaner and
cream, two types of skin cement, a double-faced tape disc, a paste and a
popular skin-barrier wafer before the pouch was applied.
He had started
out with a fairly simple ostomy system right after surgery. However, in his quest to achieve what he felt
should be a seven-day wearing time, he had been adding product after
product. Besides the many items he was
now using, he had what he described as a “closet full of products at home”.
After checking
his abdomen, it became obvious that what he needed was a product change in the
convexity of his barrier and not the addition of another product. He also needed a more realistic view of
wearing time for his particular situation.
Practically
speaking, not everyone may be able to achieve a seven-day, leak-free wearing
time with no skin irritations. It is
much better to anticipate leakage and establish a regular changing time prior
to this. You know, there are ostomy
systems for colostomates designed to be changed in about 30 seconds, whenever
full—even several times a day. Europeans
prefer this method. Here are a few hints
to remember to help achieve a successful ostomy management system:
Keep it simple. Do not use extra
cement, skin-care products or whatever unless medically necessary. Usually, extra products actually interfere
with barrier adhesion or create skin problems—especially with the new extended
wear systems. And as far as washing your
peristomal skin, plain water is still the best cleaning agent.
Do not continue to use therapeutic
products after a problem has been solved.
As an example: A steroidal cream and an anti-fungal
micro-granulated powder should not be used routinely when changing the
barrier. These products are prescribed
for particular skin problems. A
steroidal cream is usually recommended for its anti-inflammatory effects,
chronic skin itching and systematic relief of the discomfort associated with
skin irritation.
However,
continued and prolonged use of steroidal creams after the problem is resolved
may lead to thinning of the outer layer of skin. This will lead to a greater susceptibility to
skin irritations. Also, stop using an
anti-fungal powder when the fungus—also called a yeast infection—is gone.
Low-Carb/Cholesterol Diets
Adapted By The
New Outlook
The new
“flavor of the month” in ways to stay thin is the low-carbohydrate diet. Make no mistake ... if you reduce your carb
intake, then you will lose weight. But...
Carbohydrates
are what make up the fibers, starches and sugars in foods which when converted
to glucose in the body is the main building block of our energy. It is recommended that people eat about 130
grams of carbs each day for adequate brain function.
Most people
consume far too many empty calories from carbs.
Processed sugars from foods like sodas, cakes, pies, french-fries, white
bread etc. provide little nutritional value and the calories add up
quickly. But, extremely low-carb diets
can comprise adequate grain, fruit and vegetable intake, which have been shown
to fight cancer and heart disease.
Not all carbs
are the same. Each day everyone should eat
a variety of foods including whole grains, fruits, vegetables, lean meats, and
low-fat dairy foods. Eating these while
reducing your caloric intake and at the same time reducing or eliminating
processed sugar products will result in improved health, more energy and less
weight. In has already been proved.
Don’t forget
to keep up your physical activity. A
hundred pounds is not a hundred pounds.
Which do you want to be a hundred pound pillow all round and soft, or a
hundred pound steel rod—slim and hard?
And another
thing: The American Heart Association
still recommends that dietary cholesterol intake be limited to an average of no
more than 300 mg/day. If your diet is
otherwise low in cholesterol, an egg a day can be eaten. It has become clear that excluding
high-cholesterol foods from the diet has little benefit and experts say an egg
a day is OK.
Eggs are
inexpensive, highly nutritious, easy to prepare, easy to chew and are a
convenient source of high-quality protein.
Egg yolks are naturally high in an absorbable form of lutein, which
helps prevent cataracts and macular degeneration. Lutein is not made in the body so it needs to
come from diet.
There is
evidence that omega-3 fatty acids can help prevent stroke, blocked blood vessels
and coronary heart disease. There are
currently eggs available, which include an increased amount of omega-3, lutein
and vitamin E due to adding flax seed to the hen’s feed.
Obtaining your
vitamins, minerals and nutrition from foods is the natural way to good
health. Supplements may be necessary, if
prescribed by your doctor, but most are not absorb the way you think by the
body. If they are absorbed, they often overwhelm
the body making it difficult or impossible for it to obtain the many other
vitamins and minerals it needs for good health.
Irrigations—To Do or Not to Do
By Susan Wolf, CWOCN
Many people
with a colostomy just do not like to irrigate. They find the whole procedure disagreeable,
time consuming and often not very successful; i.e., despite irrigation, they
experience passage of stools one or more times a day.
Irrigation
does not work for everyone. For one
thing, your colostomy has to be in the descending or sigmoid colon. A colostomy in the ascending or transverse
colon will not be able to be controlled satisfactorily with irrigations because
the stool is too watery. One should
never attempt to regulate an ileostomy with irrigation.
People who had
a very unpredictable bowel schedule before surgery will probably continue to do
so after surgery, despite efforts to achieve regulation with irrigations. On the other hand, some people whose bowel
habits were irregular before surgery find that irrigation helps them achieve
regularity. Some people have work
schedules or lifestyles that do not permit them to irrigate at a consistent
time each day. This too can cause
irrigation to be unsuccessful or inconsistent.
You don’t
have to irrigate your colostomy.
Your bowel will work anyway, irrigation or not. The purpose of irrigating a colostomy is to
achieve regulation of the bowel so that no stool is passed between
irrigations. The main reason for
regulating the bowel is for the person with a colostomy to have an alternative
in order to be more comfortable. If
irrigating is not accomplishing regulation and is in fact making your more
uncomfortable, you should not be doing it.
Why you
were taught to irrigate in the hospital?
Some doctors use irrigations to stimulate the bowel into activity
after surgery. Some simply assume that a
person with a colostomy would prefer it.
If you do not want to irrigate, check with your doctor to find out if
there is a medical reason why you should irrigate. If there is none—which is usually the
case—the choice to irrigate or not is yours.
You may
prefer to irrigate but do not have success.
Before you give up, seek professional advice from an ostomy
nurse. You may call any one of the
nurses listed on page two of The New Outlook or our Internet site at www.uoachicago.org
and simply schedule an appointment.
You may have to modify your technique.
The experience and knowledge of a caring ostomy nurse will help you.
Some
successful pointers:
·
Hang
the irrigating container about 18 inches above the shoulder height. The bottom of the container should be about
level with the top of the ear. A bungee
cord is a versatile and adjustable device for hanging the container when
traveling.
·
Use
only up to 1000 ml of tepid water. A
volume of 500-800 ml is typical—about a quart.
Remove any air bubbles that may be trapped in the delivery tubing.
·
Insert
the lubricated come into the stoma very, very gently. The cone does not have to be pushed in all of
the way. Just enough to create a snug
fit so that no water leaks out around the cone.
·
If you
use a catheter tip to irrigate, never ... never ... never insert more that 8 to
10 cm—3 to 4 inches—as there is a danger of perforating the bowel. Press the plastic disc that comes with the
catheter tubing against the stoma to prevent leakage. In fact, unless your stoma is so tight or so
small that only a catheter will fit, you might consider permanently switching
to a cone. A cone poses much less risk
of perforating the bowel.
·
Instill
the water over a period of 5 to 10 minutes.
Be patient. If inflow doesn’t
start or it is slow, try taking a few deep breathes or altering the angle of
the cone. Choose a rate that is
comfortable to you and that does not cause cramping. If cramping occurs, stop the flow, take a few
deep breaths, wait until the cramping stops, and then resume the flow at a
slower rate.
·
After
instilling all the water, remove the cone from the stoma, close the top of the
sleeve and wait for the returns. After
about 20 minutes, you can wipe off the end of the sleeve, fold it up or clamp
it, and do whatever else you want to do for the next 40 minutes or so until the
returns are complete.
·
Remove
the sleeve, cleanse the skin and apply a pouch, cap, or gauze pad—whichever you
like to use as a stoma cover. A shower
is usually the most effective means of cleaning up after irrigation.
Remember: If you
are not having success with your irrigations, see your ostomy nurse.
Enteric-Coated Pills Question
UOA Discussion Board
Q I had my ileostomy surgery in 1979 when I was 51 years
old with very few problems these past 25 years.
But, I can't seem to communicate to my doctors in Florida that
enteric-coated pills don't usually work with an ileostomy. They are designed to work on someone with a
complete colon. Of course, I have no
rectum or colon. I inform them that
after about six hours the medicine is in my pouch. They do not seem to understand. Any ideas?
A Show them this information which was translated from the
British National Formulary—the guide for British doctors on prescribing and
considered a world authority.
1.8 Stoma care
Prescribing
medications for patients with a stoma calls for special care. The following is
a brief account of some of the main points to be borne in mind:
Enteric-coated and
modified-release preparations are unsuitable, particularly in patients with
ileostomies, as there may not be sufficient release of the active ingredient.
Laxatives, enemas
and washouts should not be prescribed for patients with ileostomies as they may
cause rapid and severe dehydration.
Colostomy patients
may suffer from constipation and whenever possible should be treated by
increasing fluid intake or dietary fiber.
Bulk-forming drugs should be tried.
If they are insufficient, as small a dose as possible of sienna should
be used.
Anti-diarrhea drugs
such as loperimide, codeine phosphate, or co-phenotype (dioxalate with
atropine) are effective. Bulk-forming
drugs may be tried but it is often difficult to adjust the dose appropriately.
Antibacterials
should not be given for an episode of acute diarrhea.
Antacids have a
tendency for diarrhea if made from magnesium salts. Plus, constipation from aluminum salts may be
increased in these patients.
Diuretics should
be used with caution in patients with ileostomies as they may become
excessively dehydrated and potassium depletion may easily occur. It is usually advisable to use a
potassium-sparing diuretic.
Digoxin used in
patients with a stoma make them particularly susceptible to Hypokalemia, if on
digoxin therapy and potassium supplements, a potassium-sparing diuretic may be
advisable.
Potassium supplements
in liquid formulations are preferred to modified-release formulations.
Analgesics such as
opioid analgesics may cause troublesome constipation in colostomy patients.
When a non-opioid analgesic is required, paracetamol is usually suitable but
anti-inflammatory analgesics may cause gastric irritation and bleeding.
Iron preparations
may cause loose stools and sore skin in these patients. If this is troublesome and if iron is
definitely indicated, an intramuscular iron preparation should be used.
Modified-release preparations should be avoided for the reasons given above.
Patients are
usually given advice about the use of cleansing agents, protective creams,
lotions, deodorants, or sealants while in the hospital, either by the surgeon
or by an ostomy nurse. Voluntary organizations can offer help and support to
patients with a stoma.
How to Call the Police
Contributed By Jane Michnik
George
Phillips of Meridian, Mississippi was going up to bed when his wife told him
that the light was on in the garden shed.
George opened the back door to go turn off the light, but saw that there
were people in the shed stealing things.
He phoned the
police, who asked, "Is someone in
your house?" and he said, “No.” Then they said how all patrols were busy, and
that he should simply lock his door and an officer would be along when
available. George told them okay, hung
up, counted to 60 and phoned the police again.
"Hello I
just called you a minute ago because there were people in my shed. Well, you don't have to worry about them now
because I've just shot all of them." Then he hung up.
Within five
minutes, three police cars, an armed response unit and an ambulance showed up
at the Phillips’ residence. Of course,
the police caught the burglars red-handed.
One of the policemen said to George, "I thought you said that you'd
shot them!"
George said,
"I thought you said there was nobody available!" A true story.
By Ralph Kaye, San
Antonio, TX
Stomal
stenosis is a narrowing of the lumen of the stoma as it passes through what is
referred to as the fascia. It is located
an inch or so below the ostomy opening and may be described as a narrowing of
the ostomy opening due to a tightening of tissue about the ileum or ostomy.
The peristomal
hernia is a widening of the defect of the abdominal wall through which the
ileum passes to reach the surface. If
this defect becomes too large, then more ileum can move into the space between
the skin and the lining of the abdominal cavity. The ileum in this space can
then twist or kink on itself and cause a blockage. Any type ostomy can
become narrowed or develop stenosis.
Your doctor
can help resolve this medical issue by several methods. Stenosis that develops right after surgery is
usually attributed to mucocutaneous separation—the stoma separating from the
skin to which it is sutured. Stenosis
that develops later may be caused by a disease; i.e., Crohn’s Disease or a
tumor; excessive scar tissue formation at the skin or fascial level; trauma
resulting from improperly fitting equipment; hyperplasia or chronic irritant
dermatitis around the peristomal skin.
Preventive
measures include maintenance of a secure pouch seal to prevent peristomal skin
breakdown, measures to acidify ones urine, prompt treatment of hyperplasia, and
awareness of signs and symptoms of partial stoma obstructions.
By Terry Gallagher, UK
When we had our ileostomy surgery,
our colon was removed. In a normal
person; i.e., a person with a full, working colon, the colon is responsible for
absorbing much of the water we drink and that is contained in our food. In addition, electrolytes such as sodium and
potassium, essential to maintaining good health, are absorbed there.
Removal or disconnection of the colon
immediately causes an initial problem because of the removal of the ileo-cecal
valve. This valve is between the ileum
or small intestine and the colon where the appendix is attached. Its purpose is to dispense the contents of
the ileum into the colon with a measured response to maximize food
absorption.
When we lose this valve, food and water
pass through our digestive system without a regulator, for a short time
anyway. The body does adjust quite well
to our new plumbing, and soon our transit rate slows to a third or a quarter of
that of people with normal colons to help make up for this loss. The ileum begins to absorb more water to compensate
for the loss of the colon but still absorbs much less
than a normal colon usually would.
Effluent from the ileum normally has about
30% of the original water taken into the body remaining, while normal stool
from a colon has about 10% remaining ... quite a difference. In addition, we lose ten times as much sodium
and potassium as someone with a colon.
Because of all this, anything that upsets this balance in our bodies has
a faster and more dramatic effect.
A typical example is gastroenteritis. A normal person with this infection may be
sick and have diarrhea for a couple of days, whereas we could end up in the
hospital with exactly the same symptoms as these because of the loss of fluids
and electrolytes. This may apply to
other problems that upset the digestive system’s balance. When these occur, a normal person may
experience nausea, vomiting, fever, abdominal cramps, bloating, bloody diarrhea
and signs of dehydration—including the veins on the back of the hands and
elsewhere becoming invisible.
People with an ileostomy may experience
these signs differently. When I had flu,
my ileostomy produced enough output to fill my pouch in just a short time. I felt nauseous and developed abdominal
discomfort. I rapidly began to
experience the symptoms of dehydration, which include a dry mouth, decreased or
virtually non-existent urine output, heart irregularities and dry skin.
In my case, I could see my urine output
had ceased as I have a urostomy as well.
This is a medical emergency! In
less than a 15-minute trip to the hospital by ambulance, the driver remarked
that I had visibly deteriorated during the trip, even with a saline IV being
administered. If hospitalized for
dehydration, you may expect IV solutions to be given. The fluid given will be saline, potassium, or
potassium and glucose to replace those essential electrolytes lost through
diarrhea. Expect an EKG to check for
heart problems, bloods to be taken, and stool and urine samples, to check for
infection, and chest and abdominal X-rays.
Dehydration is a serious medical emergency
that can lead to shock, unconsciousness and death if not treated soon
enough. Delaying treatment can also lead
to kidney damage, which may be permanent, requiring life long dialysis or a
transplant. If you become ill with
diarrhea, have vomiting and fever that persist, find yourself with a pouch
continuously filling with fluid, and have little or no urine output, seek
emergency treatment immediately.
Normal people may sneer that we’re making
a lot of fuss for a simple “tummy bug” — we’re not! It is much more serious for
us than for people with a normal colon.
Some Basic
Ostomy Hints
Via the
Internet
·
Don’t behave as if having an
ostomy makes you less of a person or some freak of nature. There are lots of us and most of us are glad
to be alive.
·
Build a support system of people
to answer questions when you have a problem.
Consider our ostomy nurses and your officers who are listed in this
newsletter.
·
Don’t play the dangerous game of
making your appliance fail by putting off a change. There aren’t any prizes given for the longest
wear time except accidents.
·
Don’t wait until you see the
bottom of your supply box before ordering more.
Always expect delays in shipping when calculating delivery times—although
most suppliers can deliver ostomy supplies to you in a day or two.
·
Zip-lock sandwich bags are useful
and odor-proof for disposal of used ostomy pouches.
·
Don’t get hung up on odors. There
are some great sprays and some internal deodorants. Remember, everybody creates some odor in the
bathroom. Don’t feel you are an
exception.
·
Hydration and electrolyte balance
is of vital importance. Be sure to drink
enough fluids to maintain good hydration, especially people with ileostomies.
·
Read and learn all you can about
ostomies. You will not only serve
yourself, but you never know when you may find an opportunity to educate
someone about the life-saving surgery that has extended so many of our lives.
·
Learn to be matter of fact about
your ostomy surgery and never embarrassed.
Few folks get out of this life without some medical problems and
unpleasant situations with which to cope. You may be amazed at how people will
admire your adaptability and courage.
·
In the beginning after surgery,
almost everyone experiences some depression.
If you fit into this category, you are certainly not alone. But it need not be a lasting condition. Try something as simple as walking…long walks
with a friend. If the depression seems
to linger, don’t be afraid or ashamed to seek professional help. There is help
out there!
·
The bottom line is...we are
alive! If we lived just a few years ago,
or in another country, we might not be.
Medicine and techniques today have given us an opportunity to experience
this second chance. It is certainly an
opportunity worth accepting and exploring.
The most important part of you as a human being has not changed.