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Live and Learn, Spring 2014

LIVE AND LEARN

Spring 2014

President’s Message

To All Members and Friends of UOASL,

I can see it! Spring is in sight – or at least every couple of days … I hope this newsletter finds you well, and if it doesn’t let us know if there is something we can do to help.

I am so thrilled each month to look out into the group and see so many faces, some who are there every month, some who are brand new, and some who are only able to join us once in a while. I know our next meeting will be a full one as we will be having our breakout sessions. I encourage those of you who haven’t made it in some time to join us. Your experience may be just what a new member needs to hear.

Just a reminder to let us know if you would like to receive this by email rather than snail mail. As I said before, I don’t want to twist anyone’s arm. I certainly understand the value of being able to hold it in your hand and turn the pages. Another option is to print it out yourself if you have that capability.

Some exciting news to share is about our upcoming Product Fair in May: Sheila Kramer, CWON, reached out to Coloplast regarding our search for a speaker. They will be sponsoring one for us, so look for your flier in the mail with more information. We will be having the Gift Card raffle again with three winners of $100 Visa cards. I hope to see many of you at Mercy Hospital May 5th at 7 p.m. in the Von Gontard Conference Center as usual.

The board is already beginning to work on plans for the national UOAA conference that is coming to St. Louis in 2015. We will be looking for volunteers to help us show off our hometown.

Please do not hesitate to call or email me (636) 916-3201 or [email protected] with any questions.

Mary Beth Akers,

President, United Ostomy Association of St. Louis

 

UOASL MEETING RECAPS

Thanks to Kelly Austin

February — Mary Beth, our president, who is also the treasurer of Youth Rally, and Courtney Mangin, Youth Rally veteran, shared a PowerPoint presentation all about Youth Rally. It is a week-long camp for youth ages 11-17 with bowel or bladder issues. It will be held this July in San Diego. It is a wonderful opportunity for youth from all over to come together to share and learn. It is a life-changing experience for them. If you know of any youth who could benefit from going, please put them in contact with us. Our local chapter offers financial support for those who attend. For more information, check out their website at www.rally4youth.org.

National News — Susan Burns, former president of our local UOAA chapter who is currently the president of the National UOAA, informed us that they are in the process of re-vamping their website to be even bigger and better. Be sure to check it out soon. Susan also reminded us that the National UOAA convention will be held in St. Louis in 2015  Sept. 1-6. It is going to be wonderful, so mark your calendars!

Email — Hey, did you hear? You can now get your Live and Learn and your meeting reminders via email! Of course, good ol’ U.S. mail is still an option, or you can even do both. To let us know your preference, please contact [email protected].

March — Our keynote speaker for the evening was Sheila Kramer, RN/BSN/CWON at Mercy Hospital. Here are some highlights from her very informative presentation on parastomal hernias:

  • Parastomal hernias are typically caused by increased intra-abdominal pressure such as when we cough, lift or strain. Some of the most common early symptoms are noticing that you are having trouble with the fitting of your pouch or that your pouch is starting to be noticeable through your clothing.
  • Parastomal hernias are notoriously difficult to repair and have a high rate of recurrence. Some of the repairs include sutures, mesh or relocation of the stoma.
  • Many different belts are available to wear once you have a hernia or as a preventative measure.
  • Talk to your doctor to see if certain kinds of gentle exercises may help strengthen your abdominal wall.

 

UOAA (United Ostomy Associations of America) and UOASL (United Ostomy Association of Greater St. Louis) are on Facebook — “like” us!

Don’t be late to the party because you waited for the news in your email or mailbox. Connect with the UOAA Facebook page where we share breaking news about ostomies in the national news and share our advocacy efforts with links of how you can help from your own home. Not to mention connect with UOAA supporters not just here in the United States, but around the world! Connect with us now!

Did you see a story about someone living with an ostomy or hear in the news a topic mentioning an ostomy? Email the link to [email protected] and we will be sure to investigate and share if we find the story appropriate and important to our mission.

Do you have a story to tell? Want to be featured in a post on our Facebook page or have your story inspire others on our website? Send an email to [email protected] and we will see if we can use your story to inspire others.

Doug Yakich, UOAA Social Media Chair

 

Can Green Tea Help Digestion And IBD Patients?

via Insights of New Jersey — Everyday Health by Sara Calabro, medically reviewed by Lindsey Marcellin, MD, MPH

Technically, green tea isn’t much different from other types of tea. Its distinct look and taste is a result of the way it’s processed. Green tea is made by steaming fresh leaves of the Camellia sinensis plant at a very high temperature. This process unlocks a class of powerful antioxidants called polyphenols, which account for many green tea benefits.

In addition to green tea benefits for digestive health, the polyphenols found in green tea have been shown to have cancer-fighting, anti-inflammatory and anti-microbial properties. The consumption of green tea for digestive health dates back thousands of years to its earliest uses in India and China. Today, green tea retains its reputation as an aid for digestion and for IBD patients, available as a drinkable tea or an over-the-counter extract.

Possible Anti-Inflammatory Effects of Green Tea

One recent study of the polyphenols found in green tea — catechins — has uncovered evidence that anti-inflammatory effects may be a green-tea benefit. Researchers from the University of Cincinnati’s College of Medicine recently looked at how a green tea catechin known as epigallocatechin-3-gallate (EGCG) may help in cases of colitis, an inflammatory disorder that disrupts digestive health. They found that EGCG may hamper the signaling pathways involved in colitis inflammation. Additional research on ulcerative colitis and Crohn’s Disease supports these findings on green-tea benefits. Green tea has been, and continues to be, studied extensively for its effects on certain types of cancer, effects which may have an indirect application to green tea for digestive health. Since IBD patients are at increased risk for colon cancer, green tea may be doubly beneficial.

Green Tea Dosing for Digestive Health

Green tea is generally considered safe in moderate amounts. In the average cup of green tea, expect a dose of 50 to 150 milligrams (mg) of polyphenols. The recommended dose is two to three cups of green tea per day (for a total of 100 to 320 mg of polyphenols, depending on the brand of tea) or 100 to 750 mg per day of a green-tea extract. An important thing to remember is that green tea contains caffeine, which can cause or worsen insomnia, anxiety, irritability and headaches. Caffeine in some people also can wreak havoc on digestive health, causing upset stomach, nausea and diarrhea. For people who are sensitive to caffeine, green-tea extracts may be an option, and can be purchased in caffeine-free form.

Studies on green-tea extracts have demonstrated similar benefits to those associated with drinking it as a tea. For example, researchers in the United Kingdom showed that green-tea extracts affect the way the body breaks down food, concluding that the extracts increase fat oxidation and improve insulin sensitivity and glucose tolerance. Increased fat oxidation refers to what happens during exercise — it means that the body is doing a better job at converting stored fats into energy, which is a good thing if you’re trying to lose weight. The findings on insulin and glucose suggest that green-tea extracts may help insulin work more efficiently in the body.

 

Walking with an Ostomy!

Top Health, Promotion & Wellness Newsletter, via The New Outlook, UOA of Chicago, Ill., and The Pouch from Virginia

Six reasons why you should walk:

• It is easy. You already know how — no special training required.

• It is safe. At a brisk pace, about three to four miles per hour, walking can burn as many calories as running. However, it is easier on your bones and joints and less likely than running or jogging to cause injuries.

• It is cheap. Walking does not require any special equipment, except for comfortable, well-fitting shoes.

• It is a weight manager. Walking helps increase the number of calories your body burns and helps control your appetite. Note: Weight control helps prevent type II — also known as adult onset — diabetes.

• It is weight-bearing. When you walk, whether it is around the block or up and down the stairs, you are bearing the weight of your body. In addition, weight-bearing exercise helps build bone mass, which prevents osteoporosis.

• It is a lifesaver. Walking is an aerobic exercise, so it is good for your heart. It lowers blood pressure and reduces the risk of heart disease, stroke and cancer.

• That is not all: Studies show walking provides you more energy, reduces stress, promotes better sleep and builds muscle and reduces fat in your legs and abdomen.

• How much should you walk? Aim for an hour most days of the week.

Recent research reported in Circulation showed that walking at least 10 miles per week reduced risk of heart disease by more than 10 percent.

Short on time? The journal also reported that two 30-minute sessions of moderate exercise — like walking — are as beneficial as a one-hour session.

I suggest walking outdoors during every season of the year, especially the spring, summer and fall.

 

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. For information, call Betsy at (314) 725-1888.

 

Time to Restart your Exercise Routine?

via Dallas (Texas) The Ostomatic News and North Central Oklahoma Ostomy Outlook

Check with your doctor before starting any exercise program!

  • Choose something fun. You won’t stick with activities you don’t enjoy. Tip: swimming, cycling and rowing may be easier on the joints!
  • Easy does it. Keep your first sessions light and fun, not tiring. Your goal is to create a habit, so don’t exercise to the point of exhaustion. You will avoid procrastination and injury.
  • Stick to a schedule. Start with moderate activity, such as a brisk walk, for at least 30 minutes every other day. Choose the most convenient and enjoyable time of the day.
  • Raise the bar. Gradually increase time, distance, weight or repetitions to build strength and endurance. Never work to the point of pain or swelling.
  • Manage sore muscles. A little stiffness is normal, but don’t exercise if you feel pain. The soreness should disappear as you exercise regularly. If it persists, consult your health-care provider.

 

“What’s an Ostomy?” Man-on-the-Street Interviews

Courtesy of the Greater Seattle Ostomy Association, The New Outlook, and the Ostomy Association of the Greater Chicago Area via The Optimist via Inside/Out, Nov.-Dec. 2013

Lazarus Ephraim, a member of an affiliated support group in Chicago, conducted a survey during which he asked if people knew what an ostomy or ostomate is. Here are some of the answers he received to this question:

“I think it has to do with people who have trouble with their feet.”

“I don’t know what it is, but I understand those people don’t have to go to the toilet. They just do it anywhere, put it in a bag and throw it away.”

“I think the former pope was one for a while when he got shot.”

“My aunt has one, but we don’t talk about it.”

“They are members of some political party.”

“These people who have had some kind of operation and they wear a bag under their clothes. They take it off when they have to go to a party.”

“I saw one of them on television recently, and she was all happy about something.”

“I wouldn’t want to be one, I heard it’s bad.”

“My neighbor is one. I think. She goes to a party at the hospital every month. She meets people there like her and they drink cranberry juice.”

“I think it has something to do with farming. I heard two of them talking about irrigation.”

Ephraim feels that we have quite a bit of educating to do in the communities — and he is correct!

The St. Louis Chapter is not going to have a team at the Southwest event as we have in the past, but we have board members who participate on teams in Highland, Ill., in July and Troy, Mo., in August.

Please help us support them in their efforts!

 

Urostomy Care

UOAA Update 7/13

The urostomate should keep in mind that the stoma may shrink for several months following surgery. It is important that your appliance fits well so that the skin around the stoma does not become thick and white due to contact with urine. This crust may rub against the stoma, causing bleeding. To cleanse the pouch of crystals, soak it in a solution of 1 part vinegar to 2 parts water. Several glasses of cranberry juice each day will help restore the acid level in your body and there is less crystallization.

The urinary pouch should be emptied often. There is no odor when the pouch is kept clean. The portion of the intestine (the ileum) that is used to form the “conduit” is mucous forming, so it is not unusual or abnormal to see some mucous in the urine. Before attaching the night drain, leave sufficient urine in the pouch to fill the entire length of the tube. This eliminates air bubbles which prevent the flow through the tube and causes backup problems.

Please remember that for best results, you will want to change your appliance first thing in the morning before you eat or drink anything. This may give some breathing room for a few minutes (when your stoma will not be active) to get the skin dried off and the new appliance in place. If you bend over and try to be sure all stored liquid is forced out before you begin the change, it may also help give you a few minutes of inactivity to complete the change.

 
From the Live and Learn Archives 3/95:

Know When You’re Dehydrated

Dr. M. Blume, Harrisburg, via Metro Maryland

The human body is composed of more than 50% water. Drinking adequate amounts of water is essential for maintaining adequate blood volume and its flow to such vital organs as the brain and the kidneys. Also, it is important for maintaining optimal function in the cells of the body.

Dehydration can be defined as a significant decrease in the total water content of the body. It occurs when the rate of water intake (mostly by mouth) is lower than the rate of losing water from the body, urine, skin, lungs, gastro-intestinal tract. When you lose a significant quantity of water, you begin to develop symptoms and signs of dehydration. Some of these are non-specific, such as weakness and lack of energy. Others are more specific, such as dizziness upon sitting or standing up from a lying position.

Why should you be worried about becoming dehydrated? The major reason is that it is important to avoid the complication of dehydration. When you become dehydrated, the volume of circulating blood decreases, and this in turn decreases the flow of blood to your vital organs. When you are lying down, the flow of blood to your brain may be marginally adequate. Without it, serious — and sometimes permanent — damage can occur.

Not only is blood flow a major problem, because as you become dehydrated, you lose water and two minerals (potassium and sodium) which are essential for optimal functioning of the body. These problems will cause some physical symptoms (such as lethargy) which may induce abnormalities in heart rhythm and bowel motility, and even cause seizures.

If dehydration is mild, you might try to rehydrate yourself by taking Gatorade or similar drink. In addition to water, Gatorade contains important electrolytes (sodium and potassium) that the body loses through vomiting or diarrhea.

When must you seek medical attention for dehydration? All situations which indicate concern about maintaining adequate hydration are significant. These include but are not limited to profuse diarrhea, protracted vomiting (unable to keep down liquids) and very high fever. Obviously, if you develop any of the signs of dehydration, you should be concerned. Urgent attention to the problems should involve not only treating the underlying causes but replacing the liquid and electrolyte losses with intravenous liquids, if adequate replacement my mouth is not feasible. While there are not clear-cut guidelines as to when you should seek medical attention, if any of the above concerns exit, the best advice is to check with your doctor before complications occur.

 

Helping Family and Friends Understand Your Ostomy

by Edgepark Newsletter, December 2013 Edition via Insights

Talking to friends — and even family — about your ostomy may seem overwhelming at first. You might wonder where to begin the conversation and how much you need to explain. The best way to know how to answer questions about your ostomy is to think through how you want to respond beforehand. Here are a few ideas to consider when talking about your ostomy with others.

Practice what you’re going to say. If you’ve recently undergone surgery, people may wonder what happened, why you’ve been gone and if you’re feeling okay. Come up with a quick response that makes you feel comfortable. You can keep it simple. Decide what and how much you wish to say about your ostomy. Practicing this answer with a close friend or family member can make answering more comfortable and easier for you.

Understand how much the other person knows about ostomies. Think back: How much did you know about ostomies before your surgery? You may have never heard of an ostomy before. Chances are many of the people you encounter won’t know anything about an ostomy either. Keep this in mind as you consider what to say to individuals about your ostomy. You might want to review general information about how the digestive system works before getting into what kind of surgery you had. For example, you might want to say something along these lines, “Have you ever heard of an ostomy? People who have serious problems with their digestive system may need surgery like I had. With the surgery the doctor brings a portion of the colon (or small intestine for an ileostomy or urostomy) through the stomach muscles so it has an opening outside the body. I attach a plastic pouch with an adhesive to collect body waste.”

Emphasize how your ostomy has benefitted your life. During the conversation you may want to point out the benefits of having an ostomy. For instance, you may have undergone ostomy surgery to treat a chronic condition and now that the surgery is over, you feel healthier.

Connect with others who have ostomies. Reach out to others with ostomies for support. In online forums you can find information and stories about how people talked to friends, family, co-workers, dates and others about their ostomy. Reading their experiences may give you added confidence when it comes to answering questions about your ostomy.

To help them answer their questions, suggest they visit www.ostomy.org, the website of the United Ostomy Associations of America Inc., to learn more.

 

UOAA National Conference

The next UOAA National Conference will be held at the Hyatt Regency St. Louis at the Arch Sept. 1-6, 2015.

The theme is a “Gateway to a New Life.”

Plan now to “Meet us in St. Louie!”

 

Youth Rally 2014

As you know, we are always looking for youths, 11-17, to send. This year will be in San Diego, Calif. We have several possible new campers but would love to send 10! Don’t let them find out about it when they are past the age. Spread the word!

Please share this information with any youth who has any issue with the bowel or bladder. The St. Louis Chapter of UOAA pays first-year scholarships (tuition and airfare, minus $75 registration deposit).

If you know of an interested youth, have them contact Mary Beth at 636-916-3201 or [email protected] for more info or log on to www.rally4youth.org.

Matching Gifts to Youth Rally

Thanks to those who have been able to take them up on this. 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. 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!

 

UNITED OSTOMY ASSOCIATION OF GREATER ST. LOUIS

Our mission at UOASL is to:

  • offer the opportunity to persons who have had colostomies, ileostomies, urostomies or alternate procedures to meet with others who share similar challenges of adjustment and for sharing of ideas and knowledge.
  • aid the ostomate in recovery and rehabilitation.
  • provide educational opportunities to medical, nursing and lay groups through lectures, demonstrations and exhibits regarding care of the ostomy patient.
  • provide the ostomate with volunteer services and social activities.
  • provide hospital visits to the patient, before and/or after surgery, at the request of the patient’s physician.
  • maintain close contact with appliance manufacturers, also local pharmacies.
  • provide information about the availability of products to ostomates and the medical profession.

ARTICLES AND INFORMATION PRINTED IN THIS NEWSLETTER ARE NOT NECESSARILY ENDORSED BY THE UOASL AND MAY NOT BE APPLICABLE FOR EVERYBODY.

PLEASE CONSULT YOUR DOCTOR OR WOCN (ET) FOR THE ADVICE THAT IS BEST FOR YOU.

AFFILIATIONS:

UNITED OSTOMY ASSOCIATIONS OF AMERICA, 1-800-826-0826, www.ostomy.org

AMERICAN CANCER SOCIETY, 4207 Lindell Blvd., St. Louis, MO 63108, 1-800-ACS-2345, www.cancer.org

Membership Benefits:

  • Education and mutual support from fellow ostomates.
  • Visitation program and conferences nationwide.
  • Product information and local meetings, programs.
  • Ostomy guidebooks and informative literature.
  • Our local publication, Live and Learn.

 

CHAPTER MEMBERSHIP APPLICATION FORM

NAME: ____________________________________________________

SPOUSE’S NAME: ___________________________________________

ADDRESS: ________________________________________________

CITY: __________________________________________

STATE: ______  ZIP CODE: __________-________

PHONE — HOME: (_____) _________ OFFICE: (_____) __________

OCCUPATION: _____________________ EMAIL: __________________________

YEAR OF SURGERY: _______ DATE OF BIRTH: ____/____/____

Please check all applicable information

Type of ostomy: (    ) Colostomy (    ) Ileostomy (    ) Urostomy (    ) Continent Ileo (    ) Continent Uros (    )

Other (please specify): ____________________

Meetings: (    ) Send meeting notices (    ) Don’t send meeting notices

Help: (    ) Would like to help on Phone Committee

(    ) Other Activities: ______________________

Assistance (    ) Request Complimentary Membership

Medical Profession (    ) Doctor (    ) RN, WOCN (    ) Other __________

UOASL chapter membership dues: (effective July 2006) $12.00 per year. Make check payable to UOASL.

SEND CHECK TO: Hank Thill, Treasurer, UOASL, 970 Imperial Point, Manchester, MO 63021, Phone: 636-225-5099

(Any contributions over $12.00 are tax-deductible, as we are a nonprofit organizaton.)

Live and Learn, Winter 2014

LIVE AND LEARN

Winter 2014

President’s Message

To All Members and Friends of UOASL,

I hope this newsletter finds you enjoying your holiday season or recovering from it as the case may be. I hope you are all blessed with a wonderful beginning to our new year, 2014.

It was wonderful to see so many of you at the Annual Banquet at Orlando Gardens a couple weeks ago. The accompanying music on the harmonica by Arpad DeKallos was wonderful addition to an evening of great food and even better fellowship.

We had a couple new folks join us who expressed to me the wonder at being able to have an open conversation about issues involving their ostomy with people who really understood. That is why we all continue to do what we do!

The following week the WOCN of the year award was presented to Retta Sutterfield. See the pictures on the next page.
I want to thank those stepping off the board after serving us well. Thanks to Les Anderhub, Al Lincoln, and Marty Henricks. We welcome our new members Herschel Austin, Bill Kriete, and Shanan Rodgers. They will join us at our first Board Meeting in January.

One new development for the new year that we were not anticipating is losing our funding from the American Cancer Society. We have benefited from their generosity for quite a few years. They have been printing and mailing this newsletter as well as sending us postcard stamps to mail the monthly meeting notices. We received word that they had to make deep cuts.

Therefore we will be paying for the printing and postage. That being said, we don’t want anyone to have to read the newsletter on the computer if they are more comfortable reading a hard copy. If, however, you would like to receive the newsletter via email instead of the mail, just let us know.

Please do not hesitate to call or e-mail me (636) 916-3201 or [email protected]

Mary Beth Akers,

President, UOA St. Louis

 

The Flu and What to Do

UOAA Update 7/13

The flu brings with it headaches, upset stomach, diarrhea, muscle
aches and pains!!!! The advice: plenty of fluids and rest in bed — this remains
sound medical advice for your general attack of the virus. But if your case
of the flu includes that “bug-a-boo” diarrhea, you may find the following
hints helpful.

For those with a colostomy, it is usually wise not to irrigate during this
time. Your intestine is really washing itself out. After diarrhea, you have a
sluggish colon for a few days, so again, “leave it alone.” Start irrigation
again after a few days when your colon has had a chance to return to normal.

For the ileostomate, diarrhea is a greater hazard. Along with the excess
water discharge, there is a loss of electrolytes and vitamins that are
necessary in maintaining good health. This loss is usually referred to as a
loss of fluid which, in turn, brings a state of dehydration. Therefore, you
must restore electrolyte balance. First, eliminate all solid food. Second,
obtain potassium safely and effectively from tea, bouillon and ginger ale.
Third, obtain sodium from saltine crackers or salted pretzels. Fourth, drink a
lot of water. Cranberry juice and orange juice also contain potassium,
while bouillon and tomato juice are good sources of sodium.

Vomiting also brings the threat of dehydration. If it is severe and
continuing, your doctor should be notified or go to the ER. You should know
also that diarrhea may be symptomatic of partial obstruction or an acute
attack of gastroenteritis. Since the treatment of these two entities is entirely
different, a proper diagnosis should be made as rapidly as possible if
obstruction is suspected because of localized cramping. Do not play
games. Remember — always call your physician unless you are 100 percent certain
of what you are doing.

For urostomates — be sure to keep electrolytes in balance by following
the general instructions for colostomies and ileostomies.

No ostomate should take medicine for pain or a laxative without the
physician’s order. Do not use antibiotics for colds or flu unless the doctor
orders it.

In colostomy patients, drugs or certain foods can cause constipation.
This can be prevented during a cold by drinking plenty of liquids.

Increased water intake in the ileostomate results in increased urine output
rather than increased water discharge through the appliance.
When returning to a normal diet, use fiber-free foods at first, then
gradually increase to regular, normal diet.

 

Annual Banquet

We had a wonderful turnout for the banquet at Orlando Gardens in Webster Groves.

Thanks to those who donated gifts for raffle: Jenny Hoffman from Coloplast, Jackie Kreitz, Nora Henricks, Betsy Naeger and Brenda Schulte.

Thanks to Betty and Marge for making our stocking favors. I’ll be hanging mine on my tree.

We were treated to some after-dinner entertainment by Arpad DeKallos on the harmonica (see photo above). The food was delicious and the fellowship even better.

Look for information in upcoming newsletters on the location of the banquet next year.

 

WOCN of the Year

On Dec. 10, the award was presented at the WOCN Holiday Party. This was the 12th year we presented the award to an ostomy nurse nominated by her peers or a member of our chapter. Congratulations to this year’s winner: Retta Sutterfield of Christian Hospital. She was indeed very surprised at the whole thing!

(From left in photo are Linda Guerin, Betsy Naeger, Mary Beth Akers, Retta Sutterfield, Hank Thill and Susan Burns.)

Sutterfield joins a great group of previous winners: Betsy Naeger, Lyn Kramer, Sheila Kramer, Colleen Cole, April Kuhlman, Linda Guerin, Janet Knebel, Sharon Waldman, Zoe Shepard, Diana Occonomon and Roxie Lupien. Congratulations to all our winners and thank you to all the nurses who serve us so well!

We also thank the WOCN Network for the generous gift of $1,000 they gave to UOASL to keep doing what we do.

 

The next UOAA National Conference will be held at the Hyatt Regency St. Louis at the Arch on Sept. 1-6, 2015.

The theme is a “Gateway to a New Life.”

Plan now to “Meet us in St. Louie!”

 

YOUTH RALLY 2014

As you know, we are always looking for youths, 11-17, to send. This year’s event will be in San Diego, Calif. We have several possible new campers but would love to send 10! Don’t let them find out about it when they are past the age. Spread the word!

Please share this information with any youth who has any issue with the bowel or bladder. St. Louis Chapter UOAA pays first year scholarships (tuition and airfare minus $75 registration deposit).

If you know of an interested youth, have them contact Mary Beth at 636-916-3201 or [email protected] for more info or log on to www.rally4youth.org.

MATCHING GIFT TO YOUTH RALLY

Thanks to those who have been able to take them up on this. 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.

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!

 

Moderation

By The Ostomy Rumble from Georgia via Newsleak

It is several months since you had your surgery, and you have adapted just fine to your new plumbing. You have a beautiful stoma. Changing your pouching system is almost a routine. Your skin has now adapted to the patch you apply, and you may wear your pouching system 3-4 days before changing it.

Boy, this is living again! No more pain! You can go out without worrying about bathroom locations and even your arthritis seems to bother you less (prednisone can do wonders). You accept an invitation to a party for the first time in two years and really rejoice in being out with your friends again.

You drink with freedom and down quite a few handfuls of peanuts. You wander to the table with raw vegetables and try them again and again joining in with your friends. The dinner is delicious — including the corn on the cob. This has been a truly great night — just like old times. It is 2:00 in the morning, and you have not slept a wink. There has been a persistent pain around your stoma that will not let you sleep. And now it is getting worse. You recall that you have not had much effluent in your pouch. What you do have is mostly water.

By 3 a.m., it is much worse and by 4:00 you are considering going to the emergency room. You remember reading about blockages and try to remember remedies that were mentioned. You drink some warm tea, pull your knees to your chest and rock back and forth.

You eat some crackers, drink some grape juice and knead the area around the stoma. You drink some more, have a little mineral oil, get in the shower and let warm water roll down your back to relax. About the time you decide to go to the hospital, you feel a little better. You notice that your pouch is no longer empty. When you empty your pouch, it is like pouring out a bag of peanuts in the toilet.

You have learned a great lesson. Sure, you can eat nuts, popcorn, raw vegetables or corn on the cob — but common sense will now tell you in the future not to eat huge quantities of them all at the same time. Eat them in moderation, drink and chew your food better.

Let me repeat: Chew your food better. Eat in moderation. Drink plenty of fluids.

 

Loss of Sponsorship

We have been incredibly fortunate for many years to have had the American Cancer Society of St. Louis sponsor this publication’s printing and mailing as well as paying for the postage on our monthly meeting reminder postcards. We cannot forget how grateful we are for all they have done.

Unfortunately, they have decided that they needed to make big cuts in outside expenditures. Our chapter has felt the blow. We will now be paying those costs out of our local UOASL’s funds. We will not be raising dues just yet however. We want to give it a year. We have been having 500 copies printed and 200-plus mailed out. The remainder of that 500 are handed out at pharmacies and hospitals, etc.

One way we are going to try to cut costs is to offer a digital copy emailed to those who are interested instead of getting a printed copy. We are also offering email meeting reminders in place of postcards.

If you are interested in receiving electronic newsletters and/or postcards, send an email to [email protected] indicating that we stop mailing newsletters, postcards, or both.

Thank you for helping us get over this hurdle.

 

Stoma Guards

Sent in by Sheila Reddick, UOASL member

Being a new ileostomy patient, I have been worried about continuing to wear some of my favorite trousers because of possible pressure leaks. This summer after my surgery I bought a couple pair of pleated front trousers in a size larger than normal thus preventing pressure on my wafers and pouches. But as the weather turned cold I wanted to wear my favorite old comfy trousers.

There were ads for stoma guards online. The first ads that I found emphasized that they were for those who were involved in sports. Those “permanent” stoma guards cost $150 — too much for an experiment. But then I spotted an advertisement in Phoenix magazine for lightweight plastic stoma guards that are sold bundled in packs of 5 for $30. I bought and tried them. They don’t come off without pulling off the whole appliance, so I just wear them all the time — even under pajamas. While they do bulge a bit, they protect my appliance from getting squashed, which could cause a “back-up” and a breach of the adhesives.

So, stoma guards are not just for young athletic types. They are also for those of us who want to get more use out of the clothing that we had before our surgery.

 

IT’S A MATTER OF SHARING

(via Ostomy News Review, Green Bay, Wis., Ostomy Support Group of Middle Georgia and Springfield, Mo.)

I know a man, a colostomate, when asked why he didn’t join the ostomy chapter said, “I’ve adjusted just fine. I don’t need the group.” His complacency set me back a bit. I thought it over.

So, maybe he doesn’t need the chapter — whatever that means. But the group needs him and others like him — well-adjusted ostomates who walk around flat-tummied and non-odorous. Of course, I’m not talking about after-shave or perfume.

An ostomy chapter is not a “halfway house” sort of thing. We don’t get together to feel sorry for ourselves, to talk exclusively about the “fun and games” of our various operations. We get together because we want to help each other or maybe to get some help with some little problem that’s been bugging us. Something our doctors can’t answer but another ostomate may.

We want to prove to all those non-believers — oops, guess I’d better call them skeptics — and non-ostomates who may think an ostomy is the end of the world. Well, it’s not. In most cases, it’s the beginning.

 

Happy Holidays to All!

(copied from Insights of OASNJ)

We are alive because we are ostomates.

May you find Peace, Health, and Prosperity!

Happy Holidays dear Ostomates, We wish you good cheer,

May your health-cares lessen, In the coming New Year.

We carry extra baggage, But we do it with Grace,

Even embarrassing accidents, Won’t make us lose face.

With the support of our friends, Whose similar problems we share,

We’re there for each other, We know that you care.

Never give up! Keep a prayer in your heart,

We’re tough — we’re survivors! And the New Year’s a fresh start!

 

From United Ostomy Associations of America’s Facebook Page

Disclaimer — This video uses questionable language and discusses adult topics. Viewer discretion advised.

Wonderful exposure for ostomates. Comedy Central did a segment on ostomies. If you are on Facebook, the easiest way to see it is to go to the link on Dec. 5, 2013, on their page (click here). If not, you can search for it using keywords “Tosh Ostomy Video Interview.”

 

Don’t Assume

By Lyn Rowell, Anne Arundel County (MD) Ostomy Association, Inc. via The Pouch, OSGNV and Insights of NJ

When you live with an ostomy, it is easy to forget that most people, including medical professionals, don’t know much or anything about stomas. Even those who have heard of ostomies, assume they are all colostomies.

When a doctor ordered an abdominal scan, I discovered that it involved drinking a lot of contrast fluid in a short period of time. I told them that everything I drank came out through my ostomy very quickly and I thought there might be a problem. I was assured there shouldn’t be, so I commenced drinking the contrast.

Unfortunately, as I expected, it didn’t take long for it to start coming into my pouch (it had a very obvious color). I went to the desk and told them that the contrast was already coming through into my pouch. The tech took me aside and after my explaining what was happening, he said, “Can’t you put a plug in it (meaning the ostomy) or something?” Now anyone who has been around ostomies knows that no, you can’t “put a plug in it” (believe me, there have been days when I wished I could!) but the tech hadn’t come across my situation before. We were able to complete the test only with less than optimal contrast, but it did show me that just because someone works in the medical field, I shouldn’t assume they know about or understand ostomies.

Sometimes a medical professional treating you for something not stoma related may forget you have an ostomy and need to be reminded. Once, during a physical, a doctor told me that as part of the exam he would do a rectal — I had to remind him that it was physically impossible for him to do that since it had been removed and that area sewn up!

So always inform and never assume.

 

Urostomy Care

UOAA Update 7/13

The urostomate should keep in mind that the stoma may shrink for several months following surgery. It is important that your appliance fits well so that the skin around the stoma does not become thick and white due to contact with urine. This crust may rub against the stoma, causing bleeding. To cleanse the pouch of crystals, soak it in a solution of 1 part vinegar to 2 parts water. Several glasses of cranberry juice each day will help restore the acid level in your body and there is less crystallization.

The urinary pouch should be emptied often. There is no odor when the pouch is kept clean. The portion of the intestine (the ileum) that is used to form the “conduit” is mucous forming, so it is not unusual or abnormal to see some mucous in the urine. Before attaching the night drain, leave sufficient urine in the pouch to fill the entire length of the tube. This eliminates air bubbles which prevent the flow through the tube and causes backup problems.

Please remember that for best results, you will want to change your appliance first thing in the morning before you eat or drink anything. This may give some breathing room for a few minutes (when your stoma will not be active) to get the skin dried off and the new appliance in place. If you bend over and try to be sure all stored liquid is forced out before you begin the change, it may also help give you a few minutes of inactivity to complete the change.

 

From INTERESTING FACTS & HINTS ABOUT OSTOMIES

By Connie Kelly, RN, MS. CETN from It’s in the Bag, St. Catharine’s, Ontario, Canada Via Springfield, MO

Review your pouch change technique

I would like to encourage you to look at how you change your pouch. After many years of living with an ostomy, people often keep adapting what they use and often find themselves using many products and taking hours to change their pouch instead of 15 to 20 minutes. Therefore I encourage you to look at each product you use and ask yourself: “Why do I use this?” and “What’s the purpose of this step?”

The procedure should be as uncomplicated as possible, and no one step should duplicate another.

 

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.

 

The Value of an Ostomy Visitor

Source: The Newsletter of the Winnipeg Ostomy Association via Green Bay

There are times when a certain person can make a difference that no one else can make. So it is with the ostomy visitor. You help someone at a time when they are vulnerable. They in turn might be the visitors of the future. Do you remember your ostomy visitor? Just when you thought you couldn’t possibly deal with this operation, a friendly face at your hospital door (or home). This person assured you that he or she had once been the patient in the bed. They could also empathize with your aches and pains, depression and your fear for the future.

You can reflect back on your questions when you first had surgery. Am I still lovable? How will I ever wear clothes? Will there be an odor? Won’t my pouch leak at an embarrassing moment? How well you remember these feelings. The visitor somehow made you feel lovable. The idea dawned that if he or she could make it, you would too. The possibility of participating in your own ostomy care didn’t seem quite so overwhelming. Perhaps you could start learning, one small step at a time. You are living proof that life goes on. You are there doing the very thing that the new patient wonders about. You are indeed a symbol of hope in the midst of their pain, confusion and fear.

Making a visit may seem like a small thing to you. It is like lighting a candle in the midst of darkness. It is helping them to help themselves. Not everyone is blessed with an ostomy visitor so they struggle to find the answers. A visitor can make all the difference.

 

OSTOMY RELATED WEBSITES

Much information of interest to ostomates can be found on the internet at various ostomy-related websites:

www.ostomy.org

www.ostomates.org

www.cancer.org

www.ostomy.evansville.net

www.ostomyinternational.org

www.hollister.com

www.convatec.com

www.ostomyok.org/oanco

www.greatcomebacks.com

www.vcn.bc.ca/ostomyvr

www.c3life.com

www.uoachicago.org

www.browardostomy.org

Check out the Frequently Asked Questions (FAQ) on the
United Ostomy Association of America Website at
http://www.ostomy.org/ostomy_info/faq.shtml.

 

The Phoenix is the leading national magazine for ostomates, their families and caregivers.

Each issue contains 72 pages of inspiration, education and information, including new products, medical advice, management techniques, personal stories and more.

Subscriptions directly fund the nonprofit United Ostomy Association of America — the only national organization providing vital information, resources, support and advocacy for ostomates.

A one-year subscription is $29.95. Two years for $49.95.

Payable to: The Phoenix Magazine, P.O. Box 3605, Mission Viejo, CA 92690

To order, go to www.ostomy.org and click on the link.

 

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

Publication deadline: Feb. 25, 2014

Send articles to: Mary Beth Akers
949 Chestnut Oak Dr.
St. Charles, MO 63303
63-/916-3201
[email protected]

LIVE & LEARN by email

Are you interested in getting this publication by email? Send an email to Mary Beth at [email protected] and let her know that.

Mailing information update

Please let Brenda Schulte know if your info changes.
Her address is: 115 Pine St., Old Monroe, MO 63369.
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.

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.

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.

 

Ostomy Awareness Day

Ostomy Awareness Day is July 31. read proclomation here

Conference Promo #7

Conference is quickly approaching. There is still time to make your reservations. You don’t want to miss out on a great chance to meet others, learn a great deal and see some great exhibitors.

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