Live and Learn, Summer 2013

LIVE AND LEARN

Summer 2013

President’s Message

To All Members and Friends of UOASL,

Are you feeling the summer heat yet? I hope you are able to
enjoy some comfortable air conditioning in your summer outings. A
trip to the pool, lake, or river might be just the ticket to cool you off
as well.

We had a great product fair with many in attendance. We
had many of our regular members as well as some first time
attendees. Whether they came to find out the latest products or to
hear our speaker, Peggy Nelson, they did not go home disappointed.

Peggy’s topic was Putting Life Back Together and she used the
game of Jenga to help us realize that after any life change, when we
put our life back together, it doesn’t wind up just the same. We
grow and change throughout our lives.

I do have to apologize for the delay in getting this issue out
to you. I have taken on a new role in the Youth Rally as the
registrar/treasurer and this past month has been pretty busy. That
being said, I am looking for an assistant who could give one
Saturday, every three months to put this newsletter together. Let me
know if you are able to help.

Remember that our National UOAA conference is in
Jacksonville, FL Aug 6-11th. See the next page. We’d love to have
you join us. Susan has done a great job to make it an event to
remember!

Hope to see you at our meetings, and if you have questions
please do not hesitate to call or e-mail me at (636) 916 3201 or
[email protected].

Mary Beth Akers,
President, UOA St. Louis

Pg. 2

As we forgot to have our drawing at the Product Fair, we will have a
drawing at the conference for refund of your registration fee for two
UOASL members. Find us when you register to get in the drawing.

 

Pg. 3

 

Caught Holding the Bag

Thanks to Oskaloosa ASG, IA, via New Life Newsletter, Charlotte, NC and the Ostomy
Support Group of Northern Virginia, The Pouch.

First You Cry — I’m not talking about grief therapy here, just the
pain! You haven’t lived until you ask a nurse for a shot and have her
pinch your cheek, saying “You just had one ten minutes ago, kiddo.
Tough it out!” And was it my imagination, or were the shots no longer
needed just when my behind could no longer stand all of the attention.

Your First Accident — My first one was in the hospital; what about
yours? My second one, however, happened at work. It severely tested
my ingenuity, and reminded me of a joke where a wino falls down
with a bottle of booze in his pocket. He felt something wet running
down his leg and said, “I hope that’s blood.”

Naming Your Stoma — I was told before my surgery that I might
decide to come up with a name for the new addition. I was dubious.
But I did name it, out of convenience. When something talks to you, it
is convenient to address it by name when talking back. You can be
poetic (Homer the Stoma) or descriptive (Vesuvius), but be
imaginative. My own medical muses helped me select Riley (as in
“Life with Riley”).

Your First Complication — Whether it is a rash or a partial blockage,
many of us deal with a side effect sooner or later. While reading
newsletters from other support groups, I ran across a home remedy
tip—such as drinking tea for an obstruction. My favorite cure for
blockage is light exercise. When an abdominal cramp rips through me,
the thought of dropping to the floor and knocking off ten pushups just
doesn’t appeal.

Not All Milestones are Negative Ones — I can still remember the
marathon appliance changing sessions just after my surgery.
Sometimes it seemed as though the seasons changed while I struggled
through the process. But we gradually progressed from marathoners to
sprinters.

The Milestone We Should Never Reach — It is to feel so
independent and self-sufficient that we no longer need to attend
meetings. For even if we become immune to problems or needs, which
strikes me as impossible, there are still opportunities to help someone
new who may feel as though he or she has been caught holding the
bag.

Pg. 4

Pillow Talk

via Great Falls (MT) Ostomy Association; East Valley (AZ) The Mail
Pouch; and North Central OK Ostomy Outlook.

• Ever try to get into a comfortable position in bed only to find that
your tummy flab or appliance seems to pull when you are on your
side? Place a pillow across your front and lean into it for firm support.

• A flat pillow placed between the legs in such a way that one end is
brought up high enough to support the lower abdomen also helps to
relieve or prevent strain.

• If on your back, try a pillow under the knees for added comfort.

• Try placing a pillow on top of you, under the sheets, if you get stuck
in a motel where bed clothing is inadequate for lowered temperatures,
it will warm you up in a hurry. Even placing a pillow alongside your
body helps.

• As ostomates, we started out as pillow people: One pressed firmly
into our back to keep us on our sides, one under the arm with the IV in
it, one clenched tightly in our arms across the incision when we were
made to cough, and even one under our bottoms when we painfully
tried to sit up. If you have forgotten about pillows, just remember, they
are natural for ostomates. Try them, you might like them.

UROSTOMY CARE

From The Ostomy Rumble, Middle Ga., via Springfield Ostomy Newsletter.

The urinary ostomy requires 3 kinds of preventive attention; care of
the stoma; care of the skin around it; and care of the kidneys.

Your routine care of kidney function includes:

1. Drinking at the very least – 1 quart of liquids daily.

2. Having your urine tested every 6 months.

3. Having an x-ray taken (IVP-intravenous pyelogram) of the kidneys
once every 2 years.

And observations:

a. Stoma for changes in size;

b. Check skin for signs of irritation, and

c. Kidneys – check the nature of urine (if dark – drink more liquids;
unpleasant odor may be a sign of infection – check it out with your physician).

Pg. 5

Internet/Newsletter Gleanings

via The Pouch-All of these are from “Digestive SmartBrief”
Gastroenterologist pens “Crohn’s & Colitis for Dummies” —

Gastroenterologist Dr. Tauseef Ali of the University of Oklahoma’s OU
Physicians Crohn’s and Colitis Clinic has authored “Crohn’s & Colitis
for Dummies,” as part of the popular “For Dummies” series. Ali says the
book, which will be sold beginning in June, fills an important gap and
serves as a guide for patients with inflammatory bowel disease, their
friends and family. The Oklahoman (Oklahoma City), (1/31/13)

All about digestion and metabolism — Many people mistakenly
believe their rate of digestion is linked to their rate of metabolism, when
they really are separate bodily processes, says dietitian Tamara Duker
Freuman. Digestion is measured by transit time and refers to how the
body breaks down food and disposes of waste through the gastrointestinal
tract, while metabolism, measured by calories expended, is the process by
which cells use energy derived from that food. U. S. News & World
Report/Eat+Run blog (2/5/13)

Study refutes link between constipation and colorectal cancer
An analysis of 28 studies found little evidence to support a link between
constipation and colorectal cancer. People who received colonoscopies
primarily due to constipation were less apt to have colon cancer than
average. The findings were published in the American Journal of
Gastroenterology. Reuters (3/21/13)

Study suggests sleep apnea may raise colorectal cancer risk
Study data from more than 100,000 people showed those who snored
regularly or were overweight and who slept nine or more hours a night
faced up to double the risk of developing colorectal cancer. Harvard
University researchers suggested that sleep apnea, which affects levels of
oxygen in the blood, may cause the increased risk. DailyRx.com (4/30/13)

Liquid diet raises nutrition, food-safety concerns, RDs say — It is
important to ensure a liquefied diet is nutritionally balanced, especially
for patients with medical conditions that change their dietary needs,
registered dietitian Jennifer Nelson writes. Juicing or blending food also
raises safety concerns when using raw vegetables and fruits for meats,
especially for people with medical conditions, and dietitians recommend
blending or juicing only enough for one meal at a time, Nelson writes.
MayoClinic.com/Nutrition-wise blog (5/14/13)

Pg. 6

Travel Tips

From Ostomates when Traveling … from Metro Maryland Thrive, by Local WOCNs in 2012;
via North Central OK Ostomy Outlook

1. When traveling abroad request a copy of the current directory of
English speaking physicians in various foreign cities, who charge a
standard fee. The International Association for Medical Assistance to
Travelers (IAMAT) publishes lists of English speaking physicians in
over 2,500 cities around the world. 716-754-4883.

2. If traveling in the US, call the biggest hospital in the city you will be
visiting for the name of the ostomy nurse or find names at
www.wocn.org.

3. TSA Cares is a helpline to assist travelers with disabilities and
medical conditions. TSA recommends that passengers call 72 hours
ahead of travel, toll free at 1-855-787-2227 about screening policies,
procedures and what to expect at the security checkpoint. Travelers
who are deaf or hard of hearing can use a relay service to contact TSA
Cares or can e-mail TSA-ContactCenter@dhs.gov. The website is
www.tsa.gov.

4. Change your pouch 24 hours before departure to assure proper
complete adherence.

5. Packing: Take twice as many supplies as you think you may need in
your carry-on case along with a change of clothing for emergencies.
Separate liquids from tape, pouches and flanges. Include baggies or
plastic bags you can tie for disposal of used pouches. Make a list of the
supplies you use with stock numbers plus the name and number of
your supplier. Take a list of ostomy support groups where you plan to
visit.

6. Protect supplies from extreme heat and cold.

7. Request an aisle seat close to the bathroom.

8. To counter dehydration, drink a glass of water or juice every hour.

9. Ask the airline about an extra hand bag allowance for medical
supplies.

10. Colostomates should not irrigate with water unfit to drink. Take a
water purifier. To hang your bag, take an over-the-door hook and a
package of shower curtain rings that open and close like safety pins.
These can be hooked together for a chain of whatever length is needed.

Pg. 7

SUMMER HEAT CONCERNS

By The New Outlook, Greater Chicago via Springfield Ostomy Newsletter, condensed by Live and Learn StL
Summer Heat Tip

An Arizona woman with an ostomy tells us that many people in
their hot climate place a thick white towel over their lap while
driving or sitting outside in a lawn chair. This helps keep some of
the heat from the sun getting to the skin barrier, reduces leaks due
to the skin barrier melting and extends the wear time of their
pouching system.

Making your own sports drink

No matter how fancy the bottle, most major sports drinks are
surprisingly simple in composition. For minimal cost, one may
purchase the ingredients and mix your own thirst quencher. Note
well that the best way to replace fluids in your body under normal
circumstances is to drink water. There is no substitute for drinking
necessary quantities of pure water.

Nevertheless, here are 2 recipes
used by some of our members:

Mix 8 ounces of water, not sparkling water, with:
1 teaspoon lemon juice
1/4 teaspoon salt
4 teaspoons sugar

OR

Mix 32 ounces of orange juice, frozen or fresh, with
4 teaspoons white Karo syrup
1 teaspoon salt
1 teaspoon baking soda

These drinks may be stored in your refrigerator for a few days and
still be fresh. Have a great time this summer, live life to the fullest
and be kind to others.

Pg. 8

SKIN RASHES AROUND THE STOMA

By Carla Mellon, RN SWOCN via The Ostomy Rumble from Middle Ga. and
Springfield Ostomy Newsletter.

There are several different types of “rashes” or skin breakdown that
can occur around the stoma, under the pouch seal.

Some of the more common types are:

Urinary stomas can develop skin breakdown as a result of
urine being in contact with the surrounding skin for an extended
period of time. This will cause the skin to develop an overgrowth
of tissue (hyperplasia) which may be referred to as “urine crystals.”

The urine may even feel grainy in the pouch. This is very painful.

Treatment should begin with correcting the cause…pouch opening
size, wear-time, maybe that convexity if necessary to prevent
leaking under the pouch seal, or adding an ostomy belt. Vinegar
soaks 2-3 times per day are also recommended in severe cases to
“breakup” the crystals. (One part vinegar and three parts water.)

Ileostomy stomas usually develop skin breakdown as a
result of stool being in contact with the surrounding skin. This can
happen fast. Early symptoms include burning and itching under the
pouch adhesive.

Again treatment begins with elimination of the cause. Steps to eliminate leakage and/or stool undermining or
pooling under the adhesive must be taken. Barrier rings, strip paste,
convexity, belts, etc., are just a few of the additions to the pouching
system that may be needed in order to secure a good seal. The skin
also will need to be treated with a barrier powder (Stomahesive,
premium, karaya) and sealed with a sealant (e.g., No-String) to
provide a dry pouching surface for the adhesive since the skin is
likely weeping.

This situation also predisposes the patient to a yeast or monilia rash,
characterized by a fine bumpy red rash usually along the edges of
the redness. This must be treated with an antifungal powder. The
antifungal powder can be used with the barrier powder or alone. It
too must be covered with a sealant (No-Sting). Monilia/yeast rashes
may also be present without any other pouching or skin care issue.

Pg. 9

This is typical in the summer with heat and when patients have been
on antibiotics.

Colostomy stomas are also subject to monilia/yeast rashes
as well, because of skin breakdown associated with stool being in
contact with the skin. See treatment above under ileostomy stomas.

All stomas are subject to allergic reactions associated with
the adhesives on the pouching system or any product (cleanser, skin
prep) that you are using on your skin. Even if you have been
wearing the same pouch, or using this product for years, you can
develop allergies to any product. The only solution is to change
pouching systems/ products and find one that you are not allergic
to. I often use Kenalog spray (prescription required) to decrease the
inflammatory process and provide pain relief until the offensive
agent can be identified and eliminated.

FOR THOSE WHO USE FACEBOOK AND TWITTER

The National UOAA is on both!

To find us on Facebook, go to Facebook.com/UOAAinc.

To follow us on Twitter, go to Twitter.com/UOAA,
or while logged in, search for @UOAA.

UOAA also has a Social Blog! You can find our blog at
blog.ostomy.org.

SWIMMING … BACK IN THE POOL!!

From The Roadrunner of Albuquerque via Springfield Ostomy.

General Tips:

• Take it slow the first time out. Save those strenuous swims and
dives until later.
• Always leave a little air in your pouch, to permit stoma drainage
to fall down into the pouch.
• When sun bathing, take a magazine or book to the beach or
pool. Lay it open over your pouch to protect your pouching
system (wafer) from the heat of the sun.
• Test your pouching system. Fill the bathtub with water and
soak for a few minutes.
• Don’t talk about your ostomy surgery at the community pool. If
asked, talk in private.

Pg. 10

Summertime … and the Living is Easy

by Bobbie Brewer, Greater Atlanta Ostomy Association Via Insights of OASNJ.

Summertime fun may include many outdoor activities and travel, but
may also lead to some concerns about ostomy management. Let’s review:

Swimming is an excellent exercise and activity you can enjoy with
family and friends. So, why are so many of us afraid to get back into
the water?

Check out these tips:

Don’t go swimming immediately after you have put on a new
pouching system.

Make sure your pouch is empty and has a secure seal.

Picture framing your wafer with water-proof tape isn’t necessary, but
may give you the extra confidence you need.

Take precautions against sunburn. Besides being bad for your skin, a
bad sunburn can result in diarrhea and sometimes vomiting, thus
depleting electrolytes.

Summer Diets

Remember the fiber content of those fresh fruits and vegetables—enjoy
but chew, chew [ileostomates, especially].

Add only one new food at a time to determine the effect (if any) on your  output.

Pg. 11

Is it OK to Get the Pouching System Wet?

via Austin (TX) Austi-Mate Journal; and North Central OK Ostomy Outlook.

The answer is yes; you can shower, bathe, swim or even get in a hot tub
with your pouching system. It is a good habit to empty the pouch before
showering, bathing, or other water activities.

On the day you change your pouching system, you may either leave it on
or you can take the whole thing off and take your bath or shower [as long
as you are not having diarrhea or other problems on this particular day].

Water won’t hurt your stoma or go inside you. If the water pressure is
strong, do not let it hit the stoma directly. Only use a gentle spray of water
on your stoma.

Check your pouching system before and after water activities. If you are
in the water for a long time, the pouching system may start to loosen from
your skin.

Pouching systems are waterproof; however, you may feel more secure if
you wear an ostomy belt or put some waterproof tape around the edges of
the skin barrier when you are in the water. Some people use paper tape
and wipe the paper tape with a skin sealant to make it more waterproof.

Some people wear tight “biking style” shorts to keep their pouch close to
their body…that keeps the pouch from “floating.”

Gas filters do not work after they get wet; therefore, it is best to protect
the filter with waterproof tape before water activities. After bathing or
swimming, you may use a towel or hairdryer on the coolest setting to dry
the tape and cloth backing of the pouching system to prevent skin
irritation from wetness.

VISITING SERVICES

Upon request from you, a Doctor, a Nurse, or an Enterostomal
Therapist (Wound Ostomy Continence Nurse): A VISITOR, who has
been specially trained will be sent to visit an Ostomy patient, either Pre-
Op or Post-Op. The visitor will be chosen according to the patient’s age,
sex and type of Ostomy. There is NO CHARGE for this service and WE
DO NOT GIVE ANY TYPE OF MEDICAL ADVICE. We only show
the patient that his/her operation is not the end of the world, but a NEW
pain-free beginning to life again. Call Betsy at 314/725-1888.

Pg. 12

EMERGENCY ROOM INFORMATION FOR OSTOMATES

By Wendy Lueder, editor Broward Beacon, Ft. Lauderdale, FL via The
Pouch, Ostomy Support Group of Northern Virginia, The Roadrunner of
Albuquerque, New Mexico and the Springfield Family Newsletters.

Ostomates have special information, which is very important to their
well-being. The following information may save your life if you are
taken to a hospital emergency room:

• What kind of surgery did you have and how long ago?

• What is your doctor’s name, phone numberand the name of the hospitals he/she works out of?

• What kind of medication and what dosage are you taking?

• Are you allergic to any medications?

• Is your skin sensitive to any of the preparations usually used by
ostomates?

• Where can your next-of-kin be located?

• What type of medical insurance do you have?

Tell someone that this information is available and where it can be
found. Take a little time and write a brief medical history about your
surgery and other important medical information about yourself. Make
a few copies and be sure to take a copy along with you when you
travel or have to go to the hospital. Since emergency rooms are not
advised as well about ostomies as we would like them to be, this
information could be very helpful and even save your life.

Gutless Wonders 

That’s the name of our team for the annual Take Steps Walk with the
Crohn’s and Colitis Foundation. Many of our members are affected by
an inflammatory bowel disease and CCFA does wonders for research on these ailments.
Mary Beth and her son walked at the event May 5th at Creve Coeur Lake Park.

Pg. 13

Urostomates Alert!

Source: Jill Conwell, RNET Corpus Christi; via Evansville Ostomy News, Vancouver
Ostomy HighLife and Winnipeg’s “Inside/Out.”

Are you aware of the symptoms of a kidney infection?

• Elevated temperature

• Chills

• Low back pain

• Blood in the urine

• Decreased urine output

If any of these symptoms persist, you should report such things to your
doctor. (Actually, you should report such things to your doctor even if you DON’T have a urostomy!)

The Overactive Ileostomy

Edited by Bobbie Brewer UOAA UPDATE 11/12

An overactive ileostomy can result from a variety of problems.

If the small bowel is inflamed due to Crohn‘s, output will be profuse.

If there is a narrowing of the small bowel close to the stoma, where the
ileostomy goes through the abdominal wall, a pressure backup can lead
to explosive high output.

Any food that has a laxative effect should be eliminated or, at best,
kept to a minimum. People with lactose intolerance will have a high
output if they use any kind of milk product, including powdered milk,
which is found in many prepared foods.

Excessive drinking of fluids will also increase ileostomy output. An
ostomate who has had their gallbladder removed may have increased
output. Medicines to counteract bile salts can be used if the problem is
related to gallbladder removal. Many prescriptions and OTC drugs list
diarrhea as a side effect.

The ostomate should work with his physician to evaluate the
problem. Once disease can be ruled out, therapeutic emphasis can be
placed on diet, utilizing foods that decrease output.

From the UOAA Update

• In an effort to get the word out about the good life after ostomy surgery,
we’d like you to take a look at an article that appears on iReport on CNN.
See the link: http://ireport.cnn.com/docs/DOC-962572.

Pg. 14

Chemotherapy and Your Ostomy

Edited by B. Brewer; via UOAA Update, Dec 2011, via North Central
Oklahoma Ostomy Outlook.

If you are taking chemotherapy, you should be aware of many
chemo agents that affect the body differently. Below are listed basic
side effects of chemo that an ostomy patient should be aware of.

Stomatitis – Is an inflammation that can develop anywhere in the
gastrointestinal tract. It may appear as white ulcers in your mouth,
on your stoma or elsewhere in your GI tract. You must be very
careful in caring for your stoma, using care in gentle removal of the
pouch and barrier, and using plain tap water to cleanse the stoma.

Dermatitis – Is an inflammation of the skin. Skin reactions are
worse when you are on chemo; therefore, if leakage occurs, change
your pouching system as soon as possible. Again cleanse your skin
with tap water only, making sure to get it clean. Look for areas of
increased redness, weeping areas, or a red rash that may have a
white head on it. If the skin is open, or you identify a rash, see your
doctor or ostomy nurse.

Diarrhea – This can be a severe side effect for an ostomy patient,
especially an ileostomate. The ostomate needs to keep track of the
amount of fluid he/she is able to drink versus what is expelled.

Dehydration – This is a big risk because it affects both fluid loss
and loss of sodium and potassium. If a colostomate develops
diarrhea, discontinue irrigations (if you normally irrigate). Eat foods
that slow the bowel down, such as bananas, rice, applesauce,
tapioca, or yogurt. Notify your doctor if diarrhea occurs. He/she
may prescribe medications to slow bowel activity

Constipation – On the opposite end of the spectrum, some agents
can cause constipation. If this occurs, contact your doctor. He/she
may want to give you a laxative or stool softener. Remember to
increase your fluid and fiber intake if you are constipated.

Chemotherapy can be taxing on you. Nutrition and rest are
essential. Do your routine stoma care when you are well rested.

 

Pg. 15

YOUTH RALLY 2013

Look for the article next issue from the
Youth Rally being held in Seattle,
Wash., July 15-20th. There will be
approximately 125 campers. Our St. Louis
Contingent is a small one this year and we
would love to have a much larger one next
year for San Diego. It is never too early to
start laying the groundwork for a camper
to attend. Please share this information
with any youth who has any issue with
the bowel or bladder. St. Louis Chapter
UOAA pays first year sponsorships
(Tuition and airfare minus $75 Registration Deposit).

If you know of an interested youth, have them contact Mary Beth at 636-
916-3201 or marybethakers@excite.com for more info or log on to
www.rally4youth.org and see what Rally is all about!

MATCHING GIFT TO YOUTH RALLY

Two of your current UOASL Members, Herb and Jim, have agreed
to match the contributions received for the YOUTH RALLY from
your DOCTORS (not from you personally) up to a total of
$300.00. This should be an incentive to every member to talk to
your doctors about this very worthwhile cause. Their office is not
Bashful about collecting their fees. This is also a great way to get
the word out and find youth to send!

UOASL Gutsy Folks continue to do some fundraising for the American
Cancer Society. We are so thankful for all the
American Cancer Society does for us, both by
providing cancer patients with education and
support and by sending out our quarterly
newsletters. If you would still like to support them
feel free to make a donation in UOASL’s name or
in honor/memory of someone you know.

Pg. 16

UOASL 2013 MEETING SCHEDULE

www.uoaastl.org

July 15-20, Youth Rally, Seattle, Washington

August 5: St. Luke’s – MCCP – The Medical Community Contact Program – How can you help?

August 6-11, UOAA Conference- Jacksonville, Florida

*September 9: St. Luke’s – Dinner and breakout groups

October 5 – Ostomy Awareness Day

**October 7: Christian NE –Lighten Your Load Through Yoga with Leslie

November 4: St. Luke’s- Dr. Leonard Naeger Lectureship

December 2: Annual Banquet – Orlando Gardens, 8352 Watson Rd. (Naples Ballroom)

*************************************************

Any articles welcome for consideration: personal experiences, health, obituaries, tested tips, etc.

Publication Deadline August 25, 2013

Send articles to:

Mary Beth Akers
949 Chestnut Oak Dr
St. Charles, MO 63303
636/916-3201
marybethakers@excite.com

LIVE & LEARN By Email

Are you interested in getting this publication by email? If you would like
to try it, send an email to Mary Beth at marybethakers@excite.com and
let her know that.

Mailing Information Update

Please let Brenda Schulte know if your info changes. Brenda’s
address is: 115 Pine St., Old Monroe, MO 63369 and her phone
number is: 636-661-5607.

Please let us know if you have any change in home address,
email address, company address or contact person.

We would really like for you to keep getting the L&Ls and postcards.

If you do not receive any of our information please let us know that, too.

 



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