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"OSTOMY NEWS"
The Official Newsletter of the Ostomy Association of Greater Orlando
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JANUARY 19, 2020 MEETING
AdventHealth-Winter Park
Conference Center/ Second Floor
Sunday 2:00 P.M
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HEADING INTO THE FUTURE
We usually use 20/20 to refer to "perfect vision," but that’s exactly what we need as we move forward into the "2020" New Year. Our January meeting will help determine where we’d like to go as a group, and how we plan to get there. If you haven’t attended a meeting in a while, this is the perfect time to come back for a visit; let us hear your voice! And yes, elections for 2020 OAGO officers will finally take place.
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Greetings Everyone!
For those of you who regularly attend meetings, you may have noticed a particular face has been missing…mine! I apologize for my absence, but hope you’ll understand.
I have been an ostomate for four years. My ostomy wasn’t planned or intended, rather it was the result of surgery, for abscessed diverticulitis, that went slightly awry. It resulted in open surgery and an ostomy. Surprise!
As a “newbie,” the lack of information and poor communication were incredibly frustrating. Most things I had to learn the hard way, through trial and error, research, online chat rooms, and YouTube. But, I adapted to my new life and finally considered myself an “accomplished” ostomate.
Several years later, I attended the UOAA National Conference in California. That was when I learned that there was actually a support group in my own back yard - OAGO! When I attended my first meeting, I wasn’t really looking for support for myself any more, although I certainly found it. What I really wanted was to become a certified “Visitor." I wanted to make the journey, of a new ostomate, a little easier than my own.
My intention was
certainly not to become OAGO's president. I wear this title lovingly, but by default (no one else wanted the job!). I promised I would do my best, but my acceptance of the role was contingent upon the idea that I would only hold office for just one year.
Knowing that my role was temporary, I set a single goal - ensure that OAGO would continue to grow and thrive, regardless of who was at the helm. We needed to collect and collate the data and wisdom of all our predecessors, and put it into a simple document, so any one could step in and know just what to do. I knew it would be a lot of work, but, I did have a year.
Surprise, again. I developed a parastomal hernia. Although in the beginning it was more of an annoyance, it continued to grow, intensify in pain, and become potentially dangerous. It needed to be repaired. My surgeon strongly advised (rightfully so) that in order to repair the hernia, I also needed to attempt a “reconnect,” (lessening the probability of a recurrence). I was not happy.
“Reversal” is a touchy subject. I didn’t
want to be reversed! Until the hernia, I had adapted perfectly to my new ostomy life, and I was (and still am to a certain degree) fearful of returning to my pre-ostomy bowel issues. That being said, on November 18th, 2019, I went in for surgery. After both a laproscopic and an open procedure, a little “cleanup,” a hernia repair, and stoma closure, I have been successfully reconnected and am doing surprisingly well.
I’m back! However, due to my "medical vacation," I am a little behind in my work. I promise to complete our SOP as quickly as I can. I also promise to make sure every single officer position is filled! And, if you’ll let me, I’ll continue to work
behind the scenes to help OAGO fill its mission.
Thank you all, so much, for letting me play a part in this wonderful organization.
Happy New Year,
Erica Michaels
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2020 DUES ARE DUE! (Say that three times fast!)
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January 1st marks the beginning of our fiscal year. It's time to pay our dues! We are a nonprofit organization dedicated to serving as many ostomates as possible. Our dues are only $20 a year, and every penny is important in helping us fulfill our mission.
(You can download this form here and bring it, with your cash or check, to the next meeting.)
Checks should be made payable to:
Ostomy Association of Greater Orlando.
If you are unable to attend this meeting, please send your check
(and membership contact information form) to:
Patrick Rodgers, Treasurer,
309 E Citrus Street
Altamonte Springs, FL 32701
*Normally, we would be able pay directly through our website, but it is currently being transferred to a new carrier.
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Next "Pop Up" Luncheon! (Sneak Peek)
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Our next "Pop Up" luncheon will be at a TOOJAY's restaurant. Since there are so many locations in our area, we felt you should have some input. We're aiming for the last week in January. Of course, we can always choose more than one date, time, and place! We'll send an E-Mail as soon as we know the details.
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NOTES FROM OUR LAST MEETING
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If you were not able to attend, we totally understand! What a busy time of year, but hopefully a fun and enjoyable one. Those members who were able to attend, enjoyed a laid back and informal get together, complete with tasty snacks and good conversation. We're getting "Back to Business" at our January 19th meeting. Hope to see you there!
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There are "Stomany" Things to Learn and "Stomany" Questions to Ask!
Sally Matson, CWOCN
will be the featured speaker at our February 16th Meeting.
You won't want to miss this meeting!
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We were recently contacted by a physician's office to see if we knew which suppliers provided ostomy supplies to Medicaid recipients. Not every supplier is required to do so. After many attempts to reach the right person, we were finally able to obtain the master list of Medicaid compliant suppliers in the five counties in the Orlando area.
We still had to cull through individual lists (quite a chore) until we could create an easy to use document. Unfortunately, when we wisely made live call verification, we were met with similar responses: "Ostomy supplies? What are those? I've been here quite a while and never dealt with this. I'll have to call my supervisor."
Since many of the places on the list (specific CVS, Walmart, and Winn-Dixies) were located in our area, we had been hoping that these locations might also be "walk-in" resources for personal out-of-pocket purchases (similar to what Binsons' does). So far this has not been the case.
Imagine how frustrating it must be for our fellow ostomates to come home from the hospital and be faced with the daunting task of finding someone who will take care of their supply needs and not having the resources to "buy on Amazon." We are needed! Please remember do donate any surplus supplies to our Ostomy Supply Gift Pantry or make a special OAGO cash donation.
We are not letting this matter go. We will continue to find a way to make this process easier. If you are interested in "tackling" the system. Please let us know.
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Your copy should address 3 key questions: Who am I writing for? (Audience) Why should they care? (Benefit) What do I want them to do here? (Call-to-Action)
Create a great offer by adding words like "free" "personalized" "complimentary" or "customized." A sense of urgency often helps readers take an action, so think about inserting phrases like "for a limited time only" or "only 7 remaining!"
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WEBSITE AND E-MAIL UPDATE!
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Things Change and Things Stay the Same (almost). Although our E-mail address and Website will remain the same, they will be moving to a new home: Constant Contact (this is where our newsletter has been generated). They have been a wonderful resource in the past, and incredibly patient with our "un-tech savvy" staff. We will now be able to combine all of our communication platforms into one simple bundle (saving time and money). There may be up to a two week delay while we transition, but things should be even better than before. We'll keep you posted!
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Would You Like a Name Tag?
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Can we make you a name tag? Please E-mail your first and last name and the correct designation (type of ostomy, family member, care provider, or medical professional) and we’ll try to have it ready for you at the next meeting.
E-mail: support@oago.org.
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Adapting to life with an ostomy can a challenge. But what’s with these new words! Appliance? Pancaking? Barbie Butt? Some terms come from medical terminology, but others are “insider” words (slang expressions) used by ostomates who “live” them first hand.
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This section originally addressed the different terms and acronyms used for wound care nurses (WOCs), ostomy nurses, ostomy management specialists, etc. Unfortunately, the document somehow disappeared. This information will appear in the next newsletter. Please enjoy this cartoon instead.
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The following is from a recent UOAA article. We thank them for sharing!
Subject of the movie White Boy Rick reveals why
depicting his ostomy was critical to the story.
By R.S. Elvey
Hollywood movies, both fictional and nonfictional, thrive on melodramas depicting romance and violence. Car crashes, explosions, shootings, and all kinds of mayhem deliver gruesome injuries to victims and survivors. The 2018 film White Boy Rick, starring Matthew McConaughey and Richie Merritt, has all these components but is unique in showing the personal aftermath of a violent act – in this case scenes depicting an ostomy.
The film, set in the 1980s on Detroit’s eastside, tells the true story of Rick Wershe, Jr., called by the local newspapers “White Boy Rick” and his father Richard Wershe, Sr. During that decade, Ronald Reagan’s War on Drugs is in full swing and the FBI is anxious to break up drug dealing and crooked police in Detroit. Agents observe 14-year-old Rick mingling with a local drug lord and his father selling illegal guns to drug gangs. They meet with Rick and his father and offer them a deal. To prevent his father from going to jail, Rick, at 14, would become an informant working for the FBI. His father agrees to the deal and Rick becomes the youngest informant ever undercover for the FBI.
While working for the FBI, Rick becomes more and more involved in the daily activities of a leading Detroit drug lord and his gang. They become suspicious of Rick and he is shot in the stomach by a .357 magnum. The bullet enters and goes clean through, severely damaging his large intestine. He is rushed to Ascension St. John’s Hospital, Detroit, where lead surgeon Dr. Norman Bolz and others save his life. He awakes with a lifesaving ostomy.
The first time the ostomy pouch appears in the film is when Rick and his father are coming home from the hospital. Rick has his left hand over his stomach and the pouch is overlapping his pants. He is also depicted emptying his pouch. In a recent correspondence with Rick from prison he said, “When I woke up, I didn’t realize that I had it. I think I touched my stomach and then first felt the bag. I didn’t know what the bag was. Dr. Bolz came in and explained to me what the bag was and how it worked. The bullet had torn through my intestines and the doctors were hoping the intestines would heal and that it could be reversed, but that it would take a while.”
While in the hospital the staff showed him how to empty and change his pouch. At home he was never seen by an ostomy nurse or received any other ostomy maintenance training. He said, “I basically had to learn on my own. Fortunately, I really didn’t have any skin problems. I had to keep the bag clean and was able to do a pretty good job. I had skin irritations but it was not too bad. I was lucky.” His friends were young and they were shocked when they saw his bag. But he said, “My family, especially my dad and grandparents, tried to be as helpful and supportive as they could.” He also met others who had ostomies. Rick had to pay for his own supplies at a local pharmacy which proved very expensive. His father wanted him to wash and reuse the pouches but Rick wouldn’t do that. He would use 2-3 new pouches a day.
Andy Weiss, one of the movie’s screenwriters, spoke numerous times with Rick while working on the screenplay. When asked why the ostomy scenes were included he said, “The ostomy scenes are the core of showing Rick’s vulnerability and what I was hoping to get from it was the sympathy and empathy that he deserved but never received from law enforcement or the people around him at that time.” Rick insisted that his ostomy should be part of the movie saying, “We included the ostomy scenes because I thought it was important to show young kids and adults that you can go through this and still be ok.” And get through it he did. Rick says that the ostomy proved to be no hindrance either socially or in his daily dealings. A year and a half after his original surgery, Dr. Bolz performed a successful revision.
Rick soon faced even greater challenges. Abandoned by the FBI and his family needing money, Rick and his father turned to the only way they knew how to make money, dealing drugs. Eventually, Rick was arrested and sentenced to 30 years for drug dealing. Now 49-years-old, he is scheduled to be paroled in 2020.
When ostomates watch the movie, the ostomy is immediately recognizable. But numerous reviewers of the movie never mention the ostomy scene. Ostomate, Robin Glover on ostomyconnection.com, wrote after viewing the film, “There were some inaccuracies, but it will definitely raise awareness and change what the word “ostomy” conjures up in the mind of anyone that sees it.” Joy Hooper, United Ostomy Associations of America’s 2019 WOCN of the Year was enthusiastic in her response to the film and said of the screenwriter, “I appreciate his way of displaying life with an ostomy. He did a superb job. He was able to show what many consider a negative aspect of life respectfully.”
*We're considering watching this together as a possible OAGO activity.
Let us know what you think!
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UOAA United Ostomy Association of America
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The UOAA is an amazing resource for ostomy information and advocacy. We, at OAGO, are affiliate support group members (ASG). UOAA provides guidance, training, (conferences), and many of the wonderful articles you’ve read through the years in our newsletters. You can always access UOAA information through their website: www.ostomy.org. However, why not become an individual member?
Online Membership are only $25 annually. This entitles you to a one year online subscription to
The Phoenix magazine, an electronic version of the New Ostomy Patient Guide, and a UOAA membership pin. Members will also receive the monthly UOAA e-Newsletter (even better than ours!) and are entitled to vote in UOAA’s national elections.
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We have added a "Member News" section to our newsletter! Please E-mail any important life events: "stomaversaries," new jobs, birth announcements, impending surgeries, etc. to newsletter@oagohome.org. and we'll try to get the information into our next newsletter.
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Thank you sponsors, donors, and advertisers. Your support of OAGO allows us to reach out to fellow ostomates and provide quality information and programs.
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Your Business Belongs Here!
(Special Rates for OAGO members)
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Phoenix Magazine is a fantastic publication for ostomates and their families.
Click above to find out more!
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Are you trying to contact us? Looking for an ostomy nurse? Supplier? Or, do you need a copy of our membership form? You can now access this information quickly and simply, by clicking the links below. From there, you can either save the documents to your computer or print them out to hang by your phone.
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