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.)



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