The New Outlook
April 2004
Last Month's
Meeting
Spring is
here. We finally had a warm mild day for
our general meeting. We were fortunate
to have two special speakers with very interesting programs presenting to our
group.
First, we had a first time guest, Carolyn M.
Shinn, RN, the Clinical Manager at Swedish Covenant Wound Care Center. She discussed the subject, “Skin problems can
be so irritating!” Included in her talk
were the common skin care problems that need attention; the correct way to
clean and moisturize the skin; and skin care dos and don’ts. She also moderated an active question and
answer session. She gave us some
interesting material we will reprint in future articles of The New Outlook.
We were
very fortunate to have Earl Sternfeld, R.Ph. from Walgreen’s in Schaumburg as a
return guest and our featured speaker.
Earl is a positive, upbeat presenter who transforms technical medical
information into an easy to understand format.
He discussed subjects relating to odor generation in the intestinal
tract; the differences between name brand and generic medications; the
positives and negatives of herbal supplements as well as intelligent
perspectives on many of the current pharmaceutical political issues. Along with his presentation, Earl brought an
assortment of gifts for our members.
We would like to thank Gerri Hesselberg, Renard Narcaroti
and Sharon Pardo for bringing a great assortment of bakery goods to our
Hospitality Table. Remember: next month
is our 29th year anniversary and the Chapter will be providing an
anniversary cake for all of us to share.
The lucky winner of the 50/50 was Sam Hesselberg, and the consolation
prize went to Henry Schneider. Our 29th
Anniversary meeting is in April with Dr. Ernestine Hambrick as our featured
presenter...be sure to come!
President’s Message:
This is one of the nicest stories I've ever heard. You
will know
precisely what
this little girl is talking about at the end!
Kleenex may be
required ... I
promise it is worth reading.
"Danielle keeps repeating it over and
over again. We've
been back to this animal shelter at least five times. It has been weeks now since we started all of
this," the mother told the volunteer.
"What is it she keeps asking
for?" the volunteer asked.
"Puppy size!" replied the
mother.
“Well, we have plenty of puppies, if
that's what she's looking for."
"I know ... we have seen most of
them," the mom said in frustration.
Just then Danielle came walking into the
office.
"Well, did you find one?" asked
her Mom. "No, not this time," Danielle said
with sadness in her voice. "Can we come back on
the weekend?" The two women looked
at each other, shook their heads and laughed.
"You never know when we will get more
dogs. Unfortunately, there's always a
supply," the volunteer said. Danielle took her
mother by the hand and headed to the door.
"Don't worry, I'll find one this
weekend," she said. Over the next
few days both mom and dad had long conversations with
her. They both felt she was being too
particular.
"It's this weekend or we're not
looking any more," dad finally said in frustration.
"We don't want to hear anything more
about puppy size either," mom added.
Sure enough, they were the first ones in the shelter on Saturday
morning. By now
Danielle knew her way around, so she ran right for the section that housed the
smaller dogs. Tired of the routine, mom
sat in the small waiting room at the end of the first row of cages.
There was an observation window so you
could see the animals during times when visitors weren't
permitted. Danielle walked slowly from
cage to cage, kneeling periodically to take a closer look. One by one the dogs
were brought out and she held each one.
One by one she said, "Sorry, you're not
the one."
It was the last cage on this last day in
search of the perfect pup. The volunteer
opened the cage door and the child carefully picked up the dog and held it
closely. This time she took a little longer. "Mom, that's it!
I found the right puppy! He's the
one! I know it!" she screamed with joy. "It's the puppy size!"
"But it's the same size as all the
other puppies you held over the last few weeks," mom said. "No not size—the sighs. When I held him in my arms, he sighed,"
she said.
"Don't you remember? When I asked you one day what love is, you
told me love depends on the sighs of your heart. The more you love, the bigger the sigh!"
The two
women looked at each other for a moment.
Mom didn't know whether to laugh or cry. As she stooped down to hug the child, she did
a little of both.
"Mom, every time you hold me, I
sigh. When you and daddy come home from
work and hug each other, you both sigh.
I knew I would find the right puppy if it sighed when I held it in my
arms," she said. Then holding the
puppy up close to her face she said, "Mom, he loves me. I
heard the sighs of his heart!"
Close your eyes for a moment and think
about the love that makes you sigh. I
not only find it in the arms of my loved ones, but in the caress of a sunset,
the kiss of the moonlight and the gentle brush of cool air on a hot day. They are the sighs of God. Take
the time to stop and listen; you will be surprised at what you hear. "Life is not measured by the breaths we take, but by
the moments that take our breath away."
Jane Michnik
Youth
Rally
UOA sponsored its first Youth Rally in
1978 through the efforts of Chapter member Marilyn Mau and others in UOA. It is a five-day camp held each year at
different locations—usually at a college campus.
The Rally includes any young person, age
11 through 17, who has an ostomy; a continent procedure; IBD; or
incontinence. The
campers, as participants are called, are joined by counselors who have an
ostomy, continent procedure or IBD.
Many of the counselors are former campers themselves. Nurses are available to assist with self-care
and education.
The week is full of all kinds of events
and activities. Each young person is shown that they are not alone. While most come from communities where they
know of no one else with the same medical condition, at the Youth Rally, the
kids share common challenges.
Those challenges do not limit their
activities. Besides general educational
sessions dealing with their medical conditions, self-esteem, social issues and
making wise choices as a teen, there are plenty of camp activities to enjoy: swimming,
softball, football, arts & crafts, karaoke, and rap sessions just hanging
out with friends to name just a few. In
addition, field trips to amusement parks, beaches and other local attractions
are available if campers choose to participate.
There’s a
graduation ceremony and dance the last night to celebrate the end of the Rally. It’s a busy five
days, but there will be smiles, laughter and friendships that last a lifetime.
The registration fee is $300 and does not
include transportation but does include room, board and activities. The 2004 Youth Rally is in San Diego from July
10-14. The Chapter sponsors a single
scholarship each year by making a direct donation to
the Youth Rally. For more information,
please check our Internet site at www.uaochicago.org , go to “Useful Links” and
click on UOA.
A New Book on Ostomy Surgery
Now Available from the UOA Book Store: Straight from the Gut: Living with Crohn’s & Colitis. This excellent reference book written by
California UOA member, Cliff Kalibjian, includes a chapter on living with an
ostomy, combines the latest medical research, numerous practical coping tips
and hundreds of personal vignettes from over 40 people touched by Crohn’s and
ulcerative colitis.
How come when you mix water and flour you get glue. Then you add eggs and sugar, and you get
cake? Where did the glue go? Think about it. There's a perfectly
logical answer ... The glue is what makes the cake stick to your butt.
Partners
to Improve Ostomy Care
On March 31, the Chapter had the
opportunity to talk to over 50 CWOCNs at a clinical educational session
sponsored by Hollister, Inc. featuring the new Lock N Roll ostomy system. This excellent program reinforced the external
relationships we have in the ostomy world; i.e., the manufacturers, the
suppliers, the ostomy nurses and UOA. We
all work together in our own capacity to enhance the life of that person who
has an ostomy. There were also
representatives from the DuPage UOA Chapter and the new revitalized Lake County
Ostomy Association.
We gained new insights into some of the
latest developments in ostomy care. You
will see these presented at our Chapter meetings and in future articles in The
New Outlook.
New Lake County Ostomy Assn.
The Lake County Ostomy
Association is once again alive!
Originally chartered in 1972, it disbanded when there were no longer
members who wanted to take leadership roles.
But today, there is a renewed effort to offer
the benefits of a local UOA chapter. We
will be featuring a monthly article in The New Outlook letting you know
about events and programs being offered. Also, check our Internet site at www.uoachicago.org
for up-to-date information on our little sister.
The kick off meeting will
be held in May at Hollister, Inc.
If you are interested in attending, please contact
Nadine Presley at 847-356-0632 or Judy Gaughan at judy.gaughan@hollister.com
.
Urostomy Question
Dear Renard,
My friend found you on your Internet
site, www.uoachicago.org
, when we were wondering about urine specimen collection and appreciated
your help. I have another problem which I have
discussed with the ConvaTec ET nurse. I had been having problems with
itching under my flange and it has been partially resolved since I started
routinely cleansing the area with the adhesive remover and washing it all with
Ivory soap. I do rinse the area well to remove all the
soap residue but have a problem with the length of time my bag stays
on.
It will last a
week and then the next week I have to change it three days in a row. My
routine is the same and nothing is significantly different in my diet or fluid
intake. I have had an ileo-conduit for almost five months now. I
use stoma paste around the cut-out hole which is measured to snuggly fit my
stoma. I
would appreciate any thoughts or suggestions you may have to help me get a week
out of every change.
I never wear it more than seven days when it lasts. Thanks for your help in advance.
Nancy
Dear Nancy,
We have asked
this same question many times to a variety of ET nurses as well as some of the
scientists at Hollister, Inc.
The best
method of changing an extended wear barrier—I believe you are probably using
one—is a little different than your current
routine. After removing the barrier, an adhesive remover should be used only sparingly, maybe once a month or so,
because the alcohol in it will dry the skin and make it itch. Also, there is virtually no need to ever wash the skin
around the stoma with any type of soap, especially Ivory. Soap will dry
out the skin and make it itch. Wash the skin that is under the barrier
with only warm water and gentle hand rubbing, it is all that is necessary.
You probably
should not use paste with a urostomy. The residue from it may enter the
stoma and cause infection. Most urostomy patients use a convex wafer with
perhaps a belt to hold it in place to achieve satisfactory results from their
ostomy system without any leaking. Using
a flat barrier may lead to leaks and not offer you the same wear time.
An ostomy
system managing a urostomy should be changed about twice
a week on average. If you are trying to make it last a week, it may not
be prudent. The skin under the barrier needs to checked
every few days to make sure there is no damage from a minor leak.
Just a drop of two of urine under the barrier will compromise the skin over
time. It is best to catch these little problems early, and we all get
them.
If there is still itching under the barrier—this can be very annoying
and significantly diminish one's quality of life—a dermatologist can prescribe
Desonide lotion. Only a drop is necessary, and it will stop the
itch. It is a steroidal based product and is not
recommended for every day use because it may thin the skin and be absorbed by
the skin and enter the body. Regardless, it is a miracle for people with
itching issues.
In addition,
if there are any red pin-head sized bumps on the
peristomal skin, this may mean the presence of fungus. This will cause
itching. Using a micro-granulated anti-fungal powder will solve
this problem. Your doctor can give you a prescription for Nicostatin
powder, a must for all people with ostomies.
I hope this little bit of information has been of help,
Renard
Ostomy Poll
What is the best thing you’ve
found about having ostomy surgery?
Results from 148 people
I’m free from
all medication and pain 23%
I’m
free from looking for nearest toilet 17%
I can
mostly do what I want, when I want 13%
I have
freedom 14%
I’m
free of my disease 10%
There
is no good thing about it ... I hate it 6%
I’ve only just
had surgery
6%
No
surgery but am contemplating it
11%
Who have you told?
Results from 757 people
Nobody—It’s my own business
4%
Only
those who need to know 20%
Only close family
5%
Only
close family and friends 27%
Anyone
who cares to listen 44%
A Baby’s Ostomy
If your child
is crying, the stoma may darken but will return to normal when the crying
stops.
A child with a
fecal or urinary ostomy will still have to be diapered
for the other output. You can diaper an
infant with the ostomy pouch inside or outside the diaper—whichever is easiest
for you.
When the baby
starts exploring its body and discovers his/her pouch, guess what? Off it comes.
So change methods. Tape the shirt
to the diaper—don’t pin it—to keep the pouch out of
sight and not hanging loose. Use
one-piece outfits, overalls or coveralls when the crawling and toddler stages
begin.
Remember, a baby sucks a lot of air with
his/her bottle. This will fill up a
fecal ostomy pouch with air. Release the
gas from the pouch often to prevent it from blowing off. And, make sure it is
emptied before letting him/her lay on his/her stomach.
Bath time can
be with or without the pouch. Water doesn’t hurt the stoma.
A Pouch Falling Off
Adapted By The
New Outlook
One of the
most embarrassing situations that can befall a person with an ostomy is to have
an accident because the barrier or the pouch pulled loose.
Multiple
reasons exist to explain the falling off of an ostomy
system:
The
stoma
The
skin around the stoma
The
barrier
The
pouch
The stoma may be placed too
close to a scar, crease or bodily prominence so that the twisting or bending
loosens the barrier. This is no single
solution for a misplaced stoma. A
different barrier may be tried; e.g., one that is softer and more pliable like
the new and improved version of Hollister’s New Image Ostomy System.
An irregular
area may be built up with the new seals—like
ConvaTec’s Eakin Seals—or with paste.
Using these products will usually solve most challenges.
A stoma may
require surgical intervention if one has a prolapsing stoma that is pushing the
pouch off. Conversely, a flat or
recessed stoma may cause pooling of the effluent around the stoma eroding the
adherence and eventually lifting the barrier from the skin. Fortunately, manufactures have developed
ostomy systems with curved barriers that put minor pressure on the skin around
the stoma. These convex ostomy systems
are a growing product line of retailers as more and more people discover the
advantages of wearing a convex barrier.
The most
stubborn falloff problem can usually be solved by
using a seal with a convex barrier held on with a belt. Your ET nurse is expert in solving these
types of issues.
The skin
around the stoma might be too oily or too irritated for the barrier to hold
satisfactorily. Bath oils and greasy
creams should be avoided. But, there are
products that may be put on the peristomal skin to treat skin irritation
problems. Ostomy product manufacturers
all carry skin care products that will treat peristomal skin and yet at the
same time allow your barrier to adhere firmly to your skin.
There are many
different producers of many different barriers.
They offer you a large choice of products that may work for you. You need to try different products if you are
having problems. One barrier will not
work for everyone in the same way. For
instance, one urostomate in our Chapter had a problem with falloff using a
flat, Stomahesive barrier. He saw an ET
from our Chapter and she recommended he try a Durahesive barrier with convexity
along with a belt to gentle hold it in place.
It worked! Our member was so
pleased that he could resume his life doing the same activities he did before
surgery.
A well fitting
pouch that is suited to your needs and lifestyle is essential. If your pouch keeps coming off, have your
entire ostomy system evaluated by an ET nurse.
Do not settle for less than excellent service from your ostomy
system. There are solutions to most any
problem with ostomy management. Invest
the time to talk to a professional ostomy nurse—at a hospital, through your
retailer, at a Chapter meeting or even by calling one of the manufacturers
themselves. There is no need to suffer!
Ileus—The Other Blockage
Forwarded By ReRoute, Evansville, IN
Bowel obstructions come in two varieties, mechanical and
non-mechanical. Most ileostomates have
encountered the mechanical variety, usually when we eat something fibrous and
do not chew it well enough.
Ileus, also called paralytic ileus, is the
non-mechanical variety. It happens when
peristalsis stops. Peristalsis is the
natural wave-like contractions of the intestines that move material through the
bowel. The symptoms can be very similar
to those of mechanical bowel obstruction, and includes pain, vomiting,
constipation and diarrhea. Several
causes are cited for ileus: infection of the peritoneum (the lining of the
abdomen and pelvic cavities), or disruption for lowering of the abdominal blood
supply.
Heart disease or kidney disease, when coupled
with low potassium levels, can trigger the condition. Certain
orthopedic surgeries, such as joint replacements or back surgeries and some
chemotherapy drugs such as vinblastine (Velban, Velsar) and vincristine
(Oncovin, Vincasar PES, Vincrex) also can cause
ileus.
So how do you know if your bowel
obstruction is due to ileus? First, see
a physician. Ileus is characterized by a
few or no bowel sounds, which your physician can easily check with a
stethoscope. Diagnosis can be confirmed by x-rays and
CT scans. Blood tests can also be useful
in diagnosis. If you do go for x-rays,
note that barium swallows are definitely contra-indicated as they can
complicate the situation.
Barium enemas can be used to visualize
blockages but administration can be a problem in persons with ostomies. A soft catheter should always be used
in the case of ileostomies. Colostomates
who irrigate should bring their irrigation catheter or ask for something
similar.
Hospitalization is
indicated. Treatment involves
rest and intravenous administration of necessary salts, water and glucose. The stomach intestinal contents may be removed via a nasogastric tube. Peristalsis usually restarts spontaneously
after two to three days of resting the bowel.
In cases where a partial mechanical blockage triggered the condition,
surgery may be performed. Fortunately, ileus is a relatively rare
condition. Very few people will ever
have this happen to them. But, this is good to know about if you happen to be that one
in a thousand.
By Ellice Feiveson
This is a milestone year for me,
it has been almost ten years since my ileostomy surgery and ten years as a
volunteer for the Metro Maryland Ostomy Society. I know in these past years I have touched
peoples’ lives and I am proud of the work I do as a volunteer.
I have spoken with and counseled women who
had ostomies due to Crohn's disease, ulcerative colitis (as I had), cancer and
other diseases. I feel that I give my
patients hope that they will live normal lives with an ostomy. It is very rewarding for me to visit a
patient at home or in the hospital knowing she may be depressed, anxious or
un-accepting of her ostomy, and then weeks later, via telephone calls or extra
visits, find that the patient is beginning to adjust to her new lifestyle,
slowly, but surely.
I must admit that volunteer work is hard,
but rewarding. I must walk into that
hospital room smiling, self-confident and pleasant. Whether I have numerous errands to run or
appointments, it is my responsibility to give each patient my undivided
attention and time, and I do.
Each patient is so different. Some patients have tons of questions for me
and others barely want to talk to me—perhaps they are in denial at that
moment. That is okay too. I think that the trick in being a good
volunteer is to be patient and understanding no matter what the circumstances. I always remember back to
when I was in that bed— sick, frightened and confused.
I have truly become a more compassionate
and caring person in the last ten years.
I have maintained friendships with some of my patients and counsel them
through the long months of healing. One
of my special patients is a young woman who lives in Washington State. She had a rare cancer and has an
ileostomy. I visited her several times
at the hospital and we truly bonded. She is a brave
woman, smart and funny, and I hope I am helping her cope
as she gets better.
I have received
notes from patients and really appreciate their kind words as to how I made a
difference by visiting them and caring. I have definitely been fulfilled these last ten years. Being a volunteer and helping others is
wonderful because I feel like I did make a difference.
Volunteering is not for everyone. If you truly love helping others, then go for
it. I know I will be continuing this work for a long
time to come. Helping others is truly my passion.
Indian River Ostomy Association, FL
As baby boomers age, there are a greater
number of illnesses just waiting for them.
Years of fast foods and stress make a breeding ground for intestinal
problems. When they can no longer deny
that their fast-paced lifestyles and poor eating habits have caught up to them,
they seek medical help.
When tests confirm intestinal problems
that require surgery, their whole world seems to explode around them when the
doctor says, “You need an ostomy.” If
the patient is fortunate enough to have a doctor who is aware of the local
ostomy association, he/she will ask the ET nurse managing the pre-surgery
examination to arrange for a visit.
It is only when an ostomate talks to other
ostomates that the problems that seemed insurmountable are gradually chipped
away. That is what the UOA and local
chapters are all about — ostomates helping other ostomates. And where is the
best place to find this information and help?
Why, at a monthly chapter ostomy meeting, of course.
Bar Codes on Medication
The
U.S. government moved to require human drugs and biological products to have
bar code labels
to reduce errors and protect patient safety.
The final rule issued by the Food and Drug
Administration calls for linear bar codes—similar to those used on millions of
consumer goods—on most prescription drugs and some over-the-counter drugs
commonly used in hospitals. The bar code
will provide company information about the drug—possibly down to details about
lot numbers and expiration dates.
The rule also requires machine-readable
codes on containers of blood and blood components for transfusion. Hospital patients will get computer-readable
identification bracelets with a bar code, which combined with information on
the drug bar code can verify the proper medication goes to the right person in
the correct dosage.
FDA said the bar code rule could help
prevent 500,000 adverse events and transfusion errors over 20 years—saving $93
billion in healthcare costs. New medications will have
to have a bar code within 60 days of FDA approval, while manufacturers of
existing medicines and blood products will have two years to
fully comply with the rule.
Medications and an Ostomy
By Jill Conwill, MSN, ET, Corpus Christi Ostomy
News
There are a variety
of forms in which medications are dispersed.
Many of the medications prescribed by a physician are
done with the knowledge that their patient is a person with an
ostomy. With the many specialists in the
medical field, it is a good practice to remind your physician that you have
an ostomy just in case the medication needs to be dispersed in a more
digestible form. The following list
discusses some of the forms in which medications are
dispersed and how they affect the ostomate:
Chewable means it should be completely chewed. Any fragments left may be found in the
effluent—stomal output. If you routinely
chew all of your tablets or separate capsules, you may be looking for trouble. Many medications are not
meant to be chewed.
Enteric Coated tablets have dissolution delayed. These tablets have diminished or minimal
effectiveness for someone with an ileostomy.
Gelatin Coated are less effective than liquids if the person with an ostomy
has short bowel syndrome.
Liquids are more rapidly absorbed. If
you have difficulty swallowing pills, ask for the
medication in a liquid form.
Sustained Release medications take 8 to 12 hours to absorb. These capsules should not
be chewed or opened—unless approved by your pharmacist. These capsules are designed
to release slowly after they pass through the stomach, not before. Side effects may be
exacerbated if directions are not followed.
Sugar Coated tablets do not dissolve completely until the tablet
reaches the ileum. Watch for traces of
the tablet in the effluent.
Uncoated tablets begin to dissolve in the stomach. But, the complete
time taken to dissolve may vary among different products ... always ask your
pharmacist to be on the safe side.
Here are some special notes regarding
certain medication groups.
Antacids use basic compounds—alkaline—which are
used to reduce acidity of the gastric contents. Sodium bicarbonate based antacids are high in
salt. Magnesium based antacids have a
laxative effect—which means do not take them if you have an ileostomy,
irrigate, or have renal failure.
Aluminum based antacids delay the emptying time of the stomach; inhibit
the absorption of iron; are constipating; and increase the excretion of
products in urine like aspirin.
Antibiotics may often result in diarrhea. If so, then increase your fluid intake. Antibiotics alter the normal bacteria found
in the large intestine and may result in a fungal—yeast, candida—infection. The large intestine has either bacteria or fungus, it is never “clean”.
Make sure you use a micro-granulated anti-fungal powder under your
barrier whenever you are taking antibiotics in order to fight off fungal
invaders.
Anti-flatulent medications help in
the dispersing and prevent the formation of gas—Mylicon or Gas-X. If the flatus is the result of the types of
foods; i.e., beans, broccoli, try Beano.
Chemotherapy may cause
gastrointestinal tract disturbances. If
you are currently irrigating and diarrhea begins, stop until the stool regains
consistency. Make sure you inform your
doctor about all side effects as well as any vitamins, supplements or
medications you are taking. Many react
to chemotherapy.
Diuretics may result in fluid and
electrolyte imbalances. Ileostomates
should not take these—unless seriously researched by your doctor. If you irrigate, you may find you get poor
results due to the dehydration of the colon.
Laxatives should
never be taken by a person with an ileostomy. Mineral oil should not be taken with a meal
... it delays the emptying time of the stomach.
Bulk-forming products—Metamucil—must be taken with sufficient water or
it will be constipating. The best way to
control output is through diet. Natural
laxatives like warm prune juice as well as adding fruits, vegetables and fluids
are best.
Odor Control can be obtained by
medications that have a bismuth subgallate base—Devrom Tablets. Chlorophyll is in parsley but may be purchased in capsule form. They will turn the stool green.
Pain Medications are constipating
so be sure to drink plenty of fluids.
Salt Substitutes reduce sodium and should be avoided by people with ileostomies.
Vitamins are
often taken without consulting your physician. Always inform your doctor if you are taking
vitamins. There are instances when
prescribed medications can interact with vitamins resulting in ineffective
absorption or cause adverse reactions.
When starting a new medication, ask what
you should expect in the way of side effects related to your ostomy. Most pharmacies present a list of actions and
side effects with each prescription. If
problems arise, call your physician so that the problem does not get out of
hand. Communication with your doctor and
your pharmacist will always pay off in the end.
Plus, most doctors and pharmacist will have to
call the drug manufacturer on some medications because absorption by someone
with an ostomy may be obscure.
March 2004
Last Month's Meeting
We had
over 50 people attend a very interesting meeting with surprise visits by some
special guests.
First,
Connie Kelly, RN/ET, discussed the anatomy of the
digestive system and the various openings that may be made through it. An ostomy may be created anywhere from the
mouth to the bottom meaning that fecal ostomies may occur anywhere along the
intestine depending on one’s diagnosis and physiology.
Plus, Connie mentioned how the various types of urostomies
work. Stomas are different. In an example, she mentioned how if we each
sewed a scarf, they would each reflect our own individual artistry. The same with stomas, they demonstrate the
artistry of the surgeon.
She also
noticed that many of her new urostomy patients have the traditional “gold
standard” procedure of an ileo-conduit.
Many are choosing this surgery over the newer continent options because
it has fewer complications and offers the patient a better quality of life.
Connie had
many questions asked of her and was available after the presentation for
private consultations.
We had
Mike Cherry and David Fradin from Hollister visiting our meeting, and Joel
Cohen from ConvaTec. Joel gave out free
samples of a Aloe Vesta 2-in-1 Skin Conditioner by
ConvaTec. It is used to help prevent and
temporarily protect chafed, chapped, cracked or wind burned skin; plus treat
and prevent minor skin irritation due to diaper rash and seals out wetness. In addition, he demonstrated the new ConvaTec
Esteem Clip Less Pouching System. We are privileged to have such knowledgeable guests attending
our meeting to volunteer relevant expertise from their own personal time. They present to us the cutting edge of
technology in ostomy systems as well as offer personal advise
on issues involving product satisfaction.
Our
featured speaker of the evening was Jeff Sorensen—cousin of member Gail
Olsen—of the Park Ridge Fire Department.
He once again had an entertaining demonstration of techniques to save lives. In addition, he brought lots
of goodies from the fire department that he handed out to our
members. We are grateful that he
accepted our invitation for a return speaking engagement.
We’d like to
thank Sam Hesselberg, Lois Knaack, Jane Michnik, Vera Miller, Renard Narcaroti
and Helen Schneider for bringing bakery goods for our hospitality table. The lucky winner of the 50/50 was Mario
Pardo, and the consolation prize went to Gail Olsen. See you again in
Spring ... it’s finally here. Remember: March is Colorectal Cancer Awareness Month.
President’s Message:
Many of you may already know that a recent
20/20 featured a Barbara Walter's interview with Meredith Viera, one of
the hosts of the ABC show The View. Meredith discussed her
husband's battle with MS and subsequent colon cancer surgeries resulting in an
ileostomy. While Barbara Walters used
the expression "wearing a bag"—which we find offensive—we are just
happy to have heard the word ileostomy used on the show.
For some
time, UOA has been trying to interest 20/20 in doing a show about
ostomy surgery as a life-saving procedure.
It seems even more appropriate now since the topic was
introduced in this recent interview.
We would also be thrilled to have Meredith Viera's show do a program on
ostomy surgery since it has affected her own life. But we need your voices to tell ABC that
ostomy topics must be discussed in a positive fashion on television.
Would you
send an e-mail to either Barbara Walters or Meredith Viera? Click
on: http://abc.go.com/daytime/theview/index.html
. On the upper left of the screen you
will see a choice to E-mail Barbara or E-mail Meredith. Select
one or both and offer your opinion.
You may wish to tell them a little about
your ostomy story. You may want to lend
support to the idea that it is time for television to talk about a topic that is not often discussed in public but should be. You will know what to say, I'm
sure.
Maybe together, we can convince the
network that it's time to discuss “the ostomy” because
we are leading productive lives as a result of our surgery. We also want to let people with ostomies to
know that UOA is here to help.
Jane Michnik
Friends of Ostomates Worldwide
Excerpted in part from the FOW newsletter
Sometimes I
wonder why all of us who are involved with FOW sacrifice so much personal time,
energy and money to help some sick person totally unknown to us? While watching our FOW video recently, I
remembered a story told by a Catholic nun at a shelter for homeless children, I think it says it
well:
On the street I saw a small girl
cold and shivering in a thin dress,
With little hope of a decent meal.
I became angry and said to God:
“God, Why did You permit this?
Why don’t You do something about
it?”
For a while God said nothing.
That night he whispered to me, I certainly did
do something about it
I made you.
It is greatly
appreciated if you are one of the “you’s” who has been
supporting FOW either by donating supplies, funds or talent.
Fred Moore
Our world
headquarters is located in Glenview, and is run
entirely by volunteers. Mike Cherry has
organized a group of Hollister, Inc. employees who come once a month on a
Saturday morning. This month they’ll be here on the 20th. Mario Pardo volunteers here Monday, Wednesday
and Friday from 9 a.m. until noon. Joan Loyd covers Thursdays and Marilyn
Mau Tuesdays. If you could invest your talent one day a month helping us during
one of these days, please call Joan at 847-724-8002.
New Book about Ostomy Surgery
I recently
received an email from a Crohn's patient who read our book, Living Well with
an Ostomy, and he strongly suggested I contact the individual UOA chapters and inform
them of this book.
Living Well
with an Ostomy was very favorably reviewed in the Fall
2003 issue of Ostomy Quarterly, as well as the WOCN
News. If you have any questions about
Living Well with an Ostomy, please don't
hesitate to contact me. Laura
Tulchinsky, Marketing Director, Sarahealth Press, www.ostomybook.com , Bulk orders: 1-866-638-6884 .
Racial Differences in Rectal Cancer
A study points to gaps in rectal cancer
treatment, including differences in care for blacks and whites and a lack of
post-surgery radiation for all. The
study, published in the Archives of Surgery, notes cancer of the colon and
rectum is the fourth most common form of malignancy in the United States, and
the second-leading cause of cancer death—lung cancer if the first.
The University of Michigan Health System
scientists found blacks with rectal cancer were more likely to have reached an
advanced stage before their cancer was caught. They were also more likely than
whites to have the kind of life saving surgery that removes the
sphincter at the end of the rectum.
Therefore, they will have a permanent ostomy. Blacks also were less likely than whites to get radiation treatments before or after
surgery.
February 2004
Last Month's Meeting
Our meeting was held on one of
those days that Chicagoans just about stop believing in spring. It was bitterly cold and snowy, but still
over 50 members and visitors came to participate.
Our guest speaker was Sue Neu,
RN/ET, who spoke to us about resources for obtaining information about ostomy
surgery. She left handouts and was
available for personal questions afterwards.
The highlighted event for the
evening was a panel discussion featuring:
Gerry Eiseman
Gayle Gilchrist
John Paruolo
Dave Rudzin
Fred Shulak
Tim Traznik
Each guest shared a bit of his/her life and the conditions that lead to
ostomy surgery. They also answered questions
on their individual quality-of-life and how they adapted to
having an ostomy. Each of our
panel had an ileostomy due to either Crohn’s Disease or ulcerative colitis.
As a side note: Every one of our panelists was delighted with
his/her ostomy. They had each gone
through terrible illnesses, and ostomy surgery gave them a new life. Fred and Dave, who had a combination of over
75 years with an ostomy, had very few physical issues with it even over all
this time.
It is always
a moving event to hear the obstacles each has overcome. We appreciate the openness of each one of our
panelist. We are grateful for them
sharing their successes in overcoming serious disease.
We’d
like to thank Jane Michnik and Helen Schneider for bringing bakery goods to our
hospitality table. The lucky winner of
the 50/50 was first time visitor Roxanne Dall, who accompanied her father to
our meeting, and the consolation prize went to Gustav
Totzke. Hope to see you again next
month.
President’s Message:
Friends,
For those of you who missed
our January meeting, we had a very interesting program that featured six of our
members answering questions about living with an ostomy. Fred, the “veteran” had his ostomy for 42
years. Gayle, the “newest” had hers for
only five months.
As you can expect, the panel
members had many similar situations and feelings, but also dealt with their
ostomies in many different ways. What
was surprising to me, however, was that not one of these people with an ostomy had
a visitor during his/her surgery or recovery period. A few knew of our support group and sought us
out, either before or after their surgery, but none of their surgeons, ET’s or
healthcare providers requested a visitor for them!
What that says to me is that
we have lots of work to do within our Chapter.
We must contact our own doctors, nurses or health care providers and let
them know what valuable work our Chapter can provide for their ostomy patients.
I know, I wrote about this
topic just a few months ago, but since our visitor training session, our
requests for visits has not changed—and that means we are not doing your
job. Our healthcare providers are very
busy people, and we can’t expect them to remember to
call us every time they have a patient who is undergoing ostomy surgery.
But
maybe, a kindly occasional reminder phone call to your nurse, or ET (CWOCN),
from you, a former patient, would remind them of our great work helping these
patients feel that they are not alone.
If you feel frustrated trying to call them and getting
switched from one extension to another, how about sending them a note by mail,
or even e-mail?
If you are getting
called to visit patients by your own doctor or nurse, then please communicate
this to our Visiting Coordinator, Jeri Zaslavsky. We can add their names to our mailing list to
receive The New Outlook free for three months, plus
send them other informative materials.
We can put patients in touch with other members of our support group who
can also help them recuperate physically and emotionally.
It is very important to me,
and probably to many of you, to let these people know
they are not alone. Even if their
surgery is only “temporary”, they still need to know how to live with it until
their surgery is reversed.
So please, get out there and
spread the word! The United Ostomy
Association does not have a designated “awareness month”, like the Heart
Association or Breast Cancer, (except for World Ostomy Day, which is only one
day every two years). We have to spread
the word ourselves. Word of mouth is the
most effective advertisement, so use it—and don’t forget to be a great example
of a productive, active, healthy and happy life after ostomy surgery!
Jane
Michnik
New Chapter
in Salem, IL
By Linda Mobley
A
group of people with ostomies started meeting quarterly in Salem, IL, during
June 2002. There are approximately 14 people with
ostomies along with spouses and friends who attend the meetings.
The group starts each meeting with a mixer in order for us to get to
know each other better. Copies of The
New Outlook are distributed to the group.
There have been a variety of programs:
·
A dietitian talked to the group about food selection;
·
A colorectal surgeon concerning new diversionary techniques;
·
An enterostomal therapist about the history of ostomies and appropriate
appliance selection;
·
A holistic nurse about relaxation techniques;
·
A nurse concerning osteoporosis with free heel bone scans provided; and
·
Various appliance vendors.
The networking that is
shared is our most important accomplishment. For more information about our group, please
e-mail Linda at Lmobley88@aol.com.
Ostomy Educational Theatre
The acclaimed series of Hollister Educational Videos now includes an
on-line group of modules to help you choose the most appropriate ostomy products
for your needs.
Visit them at www.Hollister.com
and go to the resource center for ostomy videos. It will help in selecting what’s
right for you.
Note: To view the video modules in the Ostomy Educational Theatre, you must
have Windows Media Player installed on your computer, which may
be obtained online at www.microsoft.com
.
January 2004
Last
Month's Meeting
As you walked into the room, to your eyes
would appear not eight reindeer, instead, a beautiful festive wonderland. Each table was decorated
with individual settings people brought from home. Lois Knack, who has been donating table
settings for a number of years is recovering from a
serious illness, and we wanted her to use her energy to get well and not work
as hard as she usually does on our holiday party.
Further in the
room, you couldn’t help to notice the three large tables filled with a
delicious variety of cuisines. The tasty
desert table was so plentiful that it would even make Santa Claus gasp in
delight. Renard Narcaroti was keeping
our spirits high entertaining us on the piano with songs of the holiday season. We want to thank everyone for coming, and
especially those donating grab bag presents and delicious foods.
Jerry and Sally Schinberg were the masters
of ceremony this evening. They
orchestrated the Bingo games—cleverly using participants
names as squares, and our annual raffle, where the prizes ranged from luxury
autos to an assortment of special gifts.
The festive night wouldn’t be the same without
singing carols. We finished off the
evening in our traditional manner by singing The Twelve Days of Christmas. It was a joyous time had by all!
From all of us here at the Chapter, we
wish you and your families a healthy and prosperous New Year!
President’s
Message:
Friends,
As I sit here
writing to you in this new year, I know it is
definitely winter in Chicago! I wasn’t sure lately, since we had such mild weather for
December, but today we are expecting lots of snow and much colder
temperatures.
As sure as we can
expect this kind of weather for a few months, we also start a new year, with
new hopes and dreams. Most of us look
forward to the start of a new year because the last one was not very good to
us. We have either lost someone we
loved, had many health problems within our family or we have had financial
problems. So,
with the start of the new year, we hope that this one will treat us better.
Some of us make
resolutions, which are usually broken within a month, but almost all of us wish
for a better year. And
for some of us, it hopefully will be better.
However, even if this coming year has hardships in store for us, hopefully we will become stronger and better able to handle
them. My
parents, Holocaust survivors, used to always say, “That which doesn’t break
you, makes you stronger”.
During my many years of illness, I have heard that many times from
many people, and knew that I could either give up and quit, or fight to keep
going. I chose
to fight and am glad of it. I have
become a stronger person because of my hardships, and each year I, too, also wish for a healthier and happier new year. But, I know that
even if life isn’t as good to me as I would like, I can deal with it.
So, to all my friends, I wish you a healthy and happy New
Year and the strength to persevere.
Jane Michnik
CCFA
Symposium
On
Saturday, November 8, CCFA had their annual educational symposium at the
Rosemont Convention Center. Our Chapter
had an information booth and participated in the meetings. This was our fifth year supporting CCFA in
this way.
Vera Miller,
Renard Narcaroti, Dave Rudzin and Judy Svoboda worked the booth allowing the
over 700 people attending to see us, talk to us and obtain handouts about our
new life after ostomy surgery. For many
of those attending, seeing us is a very emotional experience. You see, they are also facing surgery and are
scared of what their life will be like afterwards. Many thought that although we represented
UOA, we did not actually have ostomies.
Most were surprised when we told them we had ostomy surgery. I guessed we looked too healthy.
We saw other
members from UOA chapters across the Midwest who came to this symposium. Many stopped by to tell us who they were and
to let us know how much they supported us being involved with CCFA in this
way.
A special
note: At the luncheon, there were
four speakers from ConvaTec’s Great Comebacks program. All the speakers were UOA members, and all
the speakers had ostomies! This is the
first time we had heard anything so dramatic come from a CCFA sponsored
event. The presentations were more
reminiscent of a UOA convention. We are
encouraged that CCFA is taking a more accepting view of people with
ostomies. It is clear that the future of
both these fine organizations is merging. We look to the future benefits of UOA
and CCFA working together.