UOAA Updates

q NEWS FROM NEW ORLEANS

If you haven’t met her, come to New Orleans this August and really get to know her! She is CoCo, the Colossal Colon. Thanks to an educational grant to UOAA by edgepark arrangements have been made with the exhibit’s owner, The Colon Club, for CoCo to appear at our Conference. She is 40 feet long, 4 feet high and when crawling through her, or looking through one of the many viewing ports you will be able to learn about IBD, polyps, diverticula, hemorrhoids and other intestinal nasties. CoCo travels the country promoting awareness about diseases of the colon and encourages viewers to get regular check ups including periodic colonoscopy exams. She will be open to both UOAA Conference attendees as well as the general public on Thursday August 6^th from noon to 5:00 pm; on Friday, the 7^th from 9:00 am to 5:00 pm August and on Saturday, the 8^th, from 9:00 am to 3:00 pm in the Sheraton Hotel’s ground floor Gallery Room.

q AGS LEADERSHIP AWARD RECIPIENTS

The task was not easy, but our ASG Advisory Board, acting as an ad hoc Selection Committee, reviewed the nominations for this year’s Awards, and have selected the following support group leaders:

o Robert Cohen of the Venice Florida Ostomy Support Group

o Stanley Cooper of the Philadelphia Ostomy Association

o Bill Johnson of the Chattanooga Ostomy Association

o George Salamy of the Morris County NJ Ostomy Association, and

o Steve Vandervender of the Peoria Area Ostomy Support Group

The Awards will be presented at the Recognition Luncheon on Thursday, August 7^th, in New Orleans. Each recipient will receive $ 500 to help defray their conference attendance expenses, and they will be invited to serve as a member of the ASG Advisory Board.

YOUR ATTENTION PLEASE!!

UOAA, as one of the sponsors of the Great Comebacks^® Program is delighted to share that once again we are looking to add new faces to the Great Comebacks family!

New this year, Great Comebacks^® will honor those between the ages of 7 to 16 with the Comeback Kids Award™, an award that recognizes young people, who, despite having Crohn’s disease, ulcerative colitis, or an ostomy, live active, productive lives while managing their illness.

But that’s not all… this year also marks the 25^th anniversary for the Great Comebacks Program!

The Great Comebacks Program was established in 1984 by legendary San Diego Chargers placekicker Rolf Benirschke to provide guidance

and inspiration for people facing the physical and emotional challenges of Crohn’s disease, ulcerative colitis, colorectal cancer and/or ostomy surgery. Twenty-five years later, Great Comebacks continues to celebrate the achievements of courageous individuals, people who are helping to inspire others and raise the consciousness level of the public to where everyone will know someone who has faced one of these diseases and is now living well… often because of their surgery.

The deadline is fast approaching for this year’s award process, but there is still time to enter. If you would like to share your story and offer inspiration and encouragement to others, or you know someone who would like to share their story, I encourage you to visit the “US Awards Program” page at www.GreatComebacks.com and submit a nomination for yourself or others by July 15, 2009. Eligible entries received after July 15, 2009 will be considered as part of the 2010 process.

If you have any questions, please contact Etanjalie Ayala at 212-445-8225 or eayala@webershandwick.com.

q YOUTH RALLY

The Youth Rally Committee, Inc. is pleased to issue a forecast for smiles and great experiences for 120 campers at this year’s Rally! They send special thanks to the UOAA ASGs that have found campers, helped do their paperwork, and sponsored their attendance. The 28 groups listed here have jointly sent enough funds to pay the registration fee for 38 campers – and some of them have spent additional funds on airfare.

The camper fee is $ 425 (which covers everything except travel between home and Denver airport) so you do the math. Their dedication year after year is outstanding!

Anne Arundel, MD; Baltimore, MD; Birmingham, AL ; Broward Co, FL ; Central CT ; Cleveland, OH ; East Valley, AZ ; Flint, MI; Greater Lansing, MI; Hutchinson, KS; Joplin, MO; Kankakee, IL; Kansas City, KS; Las Vegas, NV; North Central Oklahoma; Northern San Diego Co, CA; North Suburb Chicago, IL; Oklahoma City, OK; Orange Co, CA; Los Angeles, CA; Saddleback Valley, CA; Silicon Valley, CA; Snohomish, WA; Sonoma, CA; St. Louis, MO; Southwest Suburban Chicago, IL; Tucson, AZ; Waterville, ME

The 2009 Youth Rally will be held from July 11^th to the 16^th at the University of Colorado's Boulder campus. Is there a teen in your support group who would benefit from attendance at this event? It’s not too late, but HURRY to get their application in! Find it at www.rally4youth.org or contact Linda at: laukett@rally4youth.org .

q “GET YOUR GUTS IN GEAR” IN 2009

The word is in that our senior statesman athlete, Charlie Grotevant, will be riding in the inaugural Midwest GYGIG bike ride this October 2^nd through the 4^th. Charlie’s wife Joyce will be driving their van as part of the support crew. These rides raise funds for organizations, like UOAA that promote awareness about IBD and the ostomy surgery that these diseases often necessitate. Each rider is challenged to raise a given amount. Last year UOAA received almost $40,000 as its share of the net ride proceeds. I urge you to consider supporting Charlie and his wife as they for all of us. Charlie’s ride number is Rider MW-17 and Joyce is Crew MW-C11.

For more information, and to make a donation, visit the GYGIG website at www.ibdride.org. And while you are at it, why not sign up for the August 7^th through the 9^th ride in the area north of Seattle, enjoying the summer scenes of the Skagit Valley and the Cascade Mountains. Or join Charlie cycling through the rolling fields of northern Illinois and southern Wisconsin on October 2^nd through the 4th.

q WORLD OSTOMY DAY... October 17^th 2009

To showcase talents and people and to create lasting memories in conjunction with World

Ostomy Day Hollister is again sponsoring a

World Ostomy Day Photo Contest.

The theme for WOD 2009 is “Reaching Out.”

We know there are thousands of ostomates who “reach out” each day -- and in every way, living to the fullest with your families or on vacation, during work and with your grandchildren, and while volunteering or tending to pets. We know you’re out there “reaching out” and that’s the type of image we want you to capture. Summer is upon us … what a great time for those Kodak moments. Snap the shot, submit the photo, and who knows, you may win a $ 250 award for your Support Group.

“SEIZE THE OPPORTUNITY”

Please submit your entries by August 1, 2009 to:

Diane Owen

Hollister Incorporated

2000 Hollister Drive

Libertyville, IL 60048 USA

E-mail: wod2009pc@hollister.com

q PATIENT RESOURCE GUIDES:

I hope that you are using our new Ostomy Patient Resource magazines as part of the educational material that you provide to the new ostomates you see, either as part of your Visiting Program or at your monthly meetings. We have a new supply and you are most welcome to them. They are free for the asking, but there is a nominal charge for postage. Call either Joan McGorry or Linda Torres at UOAA’s Office … 800-826-0826 .. to place your order.

q COMING SOON!

Within the next several months you will be receiving a great DVD to go with your UOAA Visiting Program Manual distributed to all ASGs last year. This was produced professionally under the direction of Dave Rudzin and will really enhance your Visitor Training!

q IN CONCLUSION

Tomorrow Linda and I will leave for St. Louis to attend the 41^st WOCN Society’s Annual Conference. UOAA has been given a complementary booth in the Exhibition Hall where we will distribute information about UOAA’s varied projects and activities and spread the word about the great support groups that are organized to assist their patients. It will also give us the opportunity to present UOAA’s WOCNurse of the Year Award to Sonya Perry of Charleston, West Virginia. It is too bad that this award has to be limited to only one person … all WOC Nurses are special to us!

We will return home in time to leave again for the GYGIG New York ride that starts at 7:00 am on Friday, June 12^thleaving from Pier 84 in NYC. I will be worn out just driving my car the 210 miles to the end of the ride in Saratoga Springs. Some day I will run out of excuses and just have to hop on a bike …. Some day maybe!

Best wishes for now,

Ken Aukett

People with urinary diversions no longer have a storage area, a bladder, for urine. Therefore, urine should flow from the stoma as fast as the kidneys can make it. If your urinary stoma has no drainage after even an hour, it is of serious concern. The distance from the stoma to the kidney is markedly reduced after urinary diversion surgery. Any external bacteria have a short route to the kidney. Since kidney infection can occur rapidly and be devastating, prevention is essential.

Wearing clean pouches and frequent emptying are vital. Equally important is adequate fluid intake, particularly fluids that acidify the urine decrease problem odor. In warm weather, with increased activity, or with a fever, fluids should be increased to make up for body losses due to perspiration and increased metabolism.

It is important that you be aware of the symptoms of kidney infection: Elevated temperature, chills, low back pain, cloudy bloody urine and decreased output.

All ileal conduits normally produce mucus in the urine which gives it a cloudy appearance. Blood in the urine is a danger sign and thirst is a good index of fluid needs.

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 the 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. Bulk laxatives can be used (only with your doctor’s permission) with each meal to absorb and solidify some of the liquid output.

A well fitted pouch does not allow for much margin of error. Consider this: The correct opening size is determined by measuring your stoma’s diameter with a measuring card and adding 1/8th of an inch. This means your pouch must be centered exactly and carefully each time. How do you do this? Good lighting is important preferably from above and from the side. Stand sideways to a light source for better visibility. A wall mirror is a great help to see that the appliance hangs straight. A crooked pouch exerts pressure on the skin and stoma and can only lead to trouble. Don’t rush! Take time to check the placement carefully before allowing your skin barrier to make contact. No time is saved if you have to do the whole thing over again because the pouch is crooked and uncomfortable. Remember, if your pouch feels out of place or uncomfortable, TAKE IT OFF! Don’t wait for injury to occur. It is better to change unnecessarily than to risk damaging that precious stoma. You have to live with it for a long, long time.

Studies show that doctors rarely let a patient finish what he/she is saying and most interrupt in a matter of seconds of the patient’s starting to speak. Researchers specializing in communication studies, say surveys of doctor-patient exchanges found about a third of those polled were reluctant ever to question their doctor’s opinion.

“We’re ultimately responsible for our health,” researchers say. “We can find another doctor, we can get second opinions but psychologically that reality doesn’t exist for many people.” It is the patient who speaks up who lives longer and gets the treatment he/she needs. Their advice: “Before your doctor’s appointment, write down all of your questions so you’ll remember what to ask, and don’t hesitate to ask plenty of questions.”

If you have had chickenpox you are at risk for Shingles. It is caused by the same virus that causes chickenpox. Once a person has had chickenpox, the virus can live, but remains inactive, in certain nerve roots in the body for many years. If it becomes active again, usually later in life, it can cause Shingles. The risk of Shingles increases as you get older. Theses viruses can activate anytime, without warning. There is no way to tell who will get Shingles or when it may occur.

The first signs of Shingles are often felt and may not be seen. These can include itching, tingling or burning. A few days later a rash of fluid filled blisters appears (only on one side of the body or face). The blisters may take 2 - 4 weeks to heal. Shingles can be painful and can cause serious problems. For most people, the pain from the rash lessens as it heals. After the rash heals, however, Shingles may lead to pain that lasts for months or even years. This is because the virus can damage certain nerves. Other serious problems that may be caused by Shingles include skin infection, muscle weakness, scarring or decreased vision or hearing.

The older you get, the more at risk you are. This is because the body can’t defend itself against the virus as well as it could when you were younger. There is now a vaccine available to prevent Shingles. Medicare and your Medicare supplement cover a lot of the cost. Everyone should get the vaccine - it’s worth it!

Some people form adhesions, bands of tough, string like fibrous tissue, more easily than others. Adhesions may form spontaneously but are more common after surgery.

If adhesions interfere with normal motion of the intestine, a blockage may occur, with food, liquid or even air unable to pass the blocked area. Severe bloating, abdominal pain, vomiting and constipation may occur. In such a serious situation, call your doctor immediately.

In many cases the possibility of adhesions wrongly gets the rap for abdominal pain. A frequent cause for such pain is a spasm of the muscles responsible for peristalsis, which propels the “bolus” through the intestines. A muscle spasm in the calf is referred to as a “Charlie horse”. Spasms in your intestines are essentially the same thing but assume the name “irritable intestine.”

May 2009 UOAA UPDATE via North Central OK Ostomy Outlook, Cedar Rapids Iowa City Newsletter

Powder is normally not required during the routine maintenance of a stoma. As a matter of fact, most modern disposable barriers are designed to adhere to the skin themselves. Powder is used to treat irritated skin or a fungal infection. Yeast (fungus, Candida) infections are very common, especially during the summer or when one perspires during regular exercise. Micro granulated anti-fungal powder is used only when there are signs of a yeast infection: i.e. an itchy rash and raised red bumps. Use the powder until the infection clears, then discontinue.

Pectin-based powders, such as Hollister’s Stoma Powder, ConvaTec’s Stomahesive or Karaya type powders, are used to treat irritated skin. To apply any kind of powder, clean the peristomal skin well with plain water and then dry. The skin should be completely dry before applying the powder. Dust the skin with the powder, gently rub it around and then brush off the excess. The barrier can be applied directly over the powder. You may also seal in the powder by applying a skin sealant over the powder and allowing it to dry.

Be careful. Skin sealants retard the adhesion of the new extended wear barriers - such as ConvaTec’s Durahesive and Hollister’s Flextend - and are not recommended. If you use a standard wear barrier, then the barrier is applied over the sealant covering the powder.

“If you’re going to kill each other, do it outside. I just finished cleaning.”

“If you don’t straighten up, I’m going to knock you into the middle of next week.”

“ If I told you once, I’ve told you a million times. Don’t exaggerate!”

Q: Doctor, I’ve heard that cardiovascular exercise can prolong life. Is this true?

A: Your heart is only good for so many beats, and that’s it… don’t waste them on exercise. Everything wears our eventually. Speeding up your heart will not make you live longer, that’s like saying your can extend the life of your car by driving faster. Want to live longer? Take a nap.

A: You must grasp the logical efficiencies. What does a cow eat? Hay and corn. And what are these: Vegetables. So a steak is nothing more than an efficient mechanism of delivering vegetables to your system. Need grain? Eat chicken. Beef is also a good source of field grass (green leafy vegetables). And a pork chop can give you 100% of your recommended daily allowance of vegetable products.

A: No, not at all. Wine is made from fruit. Brandy is distilled wine, that means they take the water out of the fruity bit so you get even more of the goodness that way. Beer is also made out of grain. Bottoms up!!

Q: What are some of the advantages of participating in a regular exercise program?

YOUR ATTENTION PLEASE!!

UOAA, as one of the sponsors of the Great Comebacks® Program is delighted to share that once again we are looking to add new faces to the Great Comebacks family!

UOAA, as one of the sponsors of the Great Comebacks^® Program is delighted to share that once again we are looking to add new faces to the Great Comebacks family!