JANUARY 2019
General Announcements
JANUARY 19th MEETING
Our January 19th meeting will feature a panel of our very own OAGO members talking about the trials, tribulations, and triumphs of urostomy life. Whether you have a urostomy, colostomy, ileostomy, or other type of diversion surgery, it is always good to know more about our fellow ostomates. Please come join us for an informative and lively event. We will meet at 10:30 AM, in the Winter Park Hospital Conference Center (first floor).
PRESIDENT'S MESSAGE
It’s That Time of Year! There’s no coy way of saying this...it’s time for OAGO dues! Each January we collect $20 dues for our yearly membership in OAGO, the Ostomy Association of Greater Orlando. Please note, that if you are unable to afford this amount, you are still entitled to full privileges – we truly value your participation and always extend our support. 

The money collected through our dues helps us fulfill our responsibility to our ostomate community. It pays our UOAA national dues and our filing fees to the state. It pays for our operating costs – website maintenance, office supplies, postage, etc. It pays for outreach – flyers, informational packets, and participation fees for outside events (health fairs). And, it helps us send a yearly donation to the Youth Rally to help send kids with ostomies, to camp. 

The amount of money we collect through our dues is quite small in comparison to the actual amount we would have to spend if it weren’t for our wonderful volunteers. No one is paid for his or her time, or gas mileage, or training, and our guest speakers offer their services for free. Countless hours of working, driving, writing, calling, researching, collecting and delivering supplies, go into providing the emotional and educational support for our members, potential ostomates, and new ostomates. 

Here’s the important point. We can’t help people, if we can’t reach people! The more money we have in our coffers, the more we can actually do. Our last outreach campaign targeted colorectal surgeons and gastroenterologists, and cost almost $300. Work has already begun to put together packets for our urologists. This outreach is already working! We received a thank you note and promise to pass on the materials, from Florida Hospital. However, this campaign also used a sizable portion of our budget.

The simple truth is we need more money. We don’t want to raise our dues. But, if you can do so voluntarily, why not double, or triple, or even quadruple your dues membership this year? If you own a company, advertise on our website. If you can offer goods or services, perhaps we won’t have to pay for items out of pocket. If you work for a large corporation, ask them if they have a matching donation program (we are a registered non-profit). 

It is easier than you think. This year you have three payment options! To pay right now, just click on the donate button below. You can bring your updated membership form to a meeting or you can mail your membership and dues to: 

Ostomy Association of Greater Orlando
   c/o Patrick Rodgers
   309 East Citrus
   Altamonte Springs, Florida 32701

No more money talk. Instead, please let me wish all of you a very a happy, healthy, fulfilling, and prosperous new year!

Yours truly,
Erica Michaels 
NEWSLETTER NAME CHANGE
Many of you will notice that the name of our newsletter has changed. 

The original name, “The Picture Frame” was a reference to the tape that held a wafer in place and "framed" the stoma. 

Since many people, especially new members, were not familiar with the reference, there was some confusion as to how the name related to an ostomy group. Suggestions were made, and the top five contenders were voted upon (Picture Frame included). The overwhelming winner was "Ostomy News."

Our former editor, Patrick Gessel has been wonderful, even to the point of publishing our newsletter long distance from Texas. But, he has stepped down, and this seemed an appropriate time to make the name change.

We do not yet have an official new editor, but efforts are being made to create a simple template. Hopefully, this will make the writing and editing process a little simpler for the next member willing to step up to the plate! Please send your suggestions to newsletter@oagohome.org.

Member Portraits
For many years our newsletters have provided a sense of family and unity to our OAGO members. This has been the important and valued task of Patrick Gessel.

PATRICK GESSEL
I want to say a big “Thanks you” to our recently retired Newsletter editor, Patrick Gessel.  
But, calling Pat our Newsletter editor does not come close to telling the whole story.  
If you are new, you do not know that he was also our President, our “gift room” supervisor, a visitor, and a great Dad to an ostomate. Pat’s daughter Christine had her surgery when she was a teenager.

Since our group began back in the 1970’s, OAGO had been sending out a newsletter in paper form. Many folks helped with this process. As the computer age dawned, we were starting to do several things online. But, it took Pat to get us organized to do almost all our mailings with email addresses instead of in the “snail mail.” At this time, I believe it is only a handful of folks who receive the paper form! 

OAGO was not Pat’s first volunteer position. He was head of a local Crohn’s and Colitis chapter in Wisconsin, before retiring from his architectural position there. He and his wife Kim moved to Orlando to be close to Christine. Christine introduced Pat to our chapter. Thank you Christine!!  

But even after moving away, Pat has compiled our newsletter. We can’t thank you enough, Pat for all your caring of so many folks. Enjoy retirement in Texas. But I am thinking you are not finished volunteering!
- Shelley Dittmer 

P.S. Stay tuned next month to hear a “Thank You” to another loyal board member.  
KAREN AND ANDREW COSTA
Andrew is the son of Karen Costa. She is also one of our certified “Visitors.” We are extremely lucky to have her as a member who can be there for other moms and dads of new young ostomates.

Andrew was born 12/26/2005, the day after Christmas. He is a freckly faced, happy, hearty, strong and very playful 13 year old Down Syndrome boy. Before the age of 6, Andrew was in the hospital often, and has been in school since he was 3 years old. 

Andrew spent 3 months after birth in the hospital, due to his colon not functioning correctly. The cells of his colon were not properly moving to empty his bowel. His condition is Hirschsprungs Disease. Before his 6 th birthday, Andrew underwent a colon resection, colostomy takedown and a temporary colostomy, then no colostomy. We were in and out of the hospital, every 3-6 months, with week stays being very common.

Finally, after a year of trying with no colostomy, Andrew had to have his permanent colostomy surgery in December 2011. Several weeks later, Andrew had a severe infection near the wound site that hospitalized him for 3 weeks.

By March 2012, we were doing OK, besides trying to figure out what bags to use, what insurance would allow and what warehouse supplier to go with that insurance covered. Even though we were changing bags often, up to 5 times a day, Andrew was more and more healthy each day.

We even had a minor struggle with his elementary school, stating that because blood and poop were leaking from his bag, he would have to be removed from school. As I had already informed them what to expect, I called the surgeons office and they took care of that issue. Aside from school, I had plenty more to stress about.
Manuel, Karen, Andrew
During Spring Break that year, my oldest daughter came back with Andrew from playing down the street, at a friend’s house. Andrews stoma suddenly looked like a big red apple, I thought I would faint right there in the hall. Holy Smokes! So, once again back to the emergency room we went to figure out this latest catastrophe out.

A wonderful doctor told me it had prolapsed, would likely shrink back on its own, and assured me it was nothing to be alarmed about. The stoma did decrease from apple to just large regular intestine sticking 4” out, even though it seemed more like 4’ of grossness.

We visited a pediatric gastro doctor who said it was a healthy, large prolapsed stoma and there would be a 50/50 chance it would prolapse again with surgery. So, I chose not to bother with more surgery.

Andrews bag changes consist of 3 parts, being as he has a large prolapsed stoma, that no step can be missed or it just doesn’t last for a long period of time.

Andrew's ostomy system consists of:
*Hydrocolloid, to protect skin and helps the
bag stay on
*an adult size Coloplast bag with a filter and
Velcro closure, cut to fit
*Finally to keep everything intact, a clear
Sure Seal ring type of Tegaderm
Last Month's Meeting Notes
Our December “working” meeting was a great success! We stuffed and addressed over 500 pamphlets, business cards, magnets, and personalized letters into packets for our most important gatekeepers – doctors, surgeons, and wound care nurses. This is just the first of many scheduled outreach campaigns. Our goal is to ensure that any current or potential ostomate who needs us, knows we are here to help.
 
We also began work on a FAQ (Frequently Asked Questions) section for our website, discussed alternate ways of strengthening our bank balance (including possible fundraisers), and we even assigned “homework!”
 
Not everyone can attend meetings; not everyone can volunteer. But, whether someone feels that ostomy life is daunting or someone else feels that it is “a piece of cake,” everyone should feel valued, respected, and supported. 

P.S. Our work is paying off! We just got our first response for Florida Hospital thanking us for the information and promising to pass it on to new ostomates!
COMING ATTRACTIONS!
Having an ostomy adds a completely new meaning to "What Should I Wear?" Come join us at our Februrary 16th meeting as we explore clever options for dressing both fashionably and comfortably. Do you have special tricks you'd like to share? Please contact us at support@oagohome.org.

Visitor Training Class - If you are interested in becoming a certified "Visitor" and haven't yet put your name on the list, please contact visitor@oagohome.org. Date and times will be announced soon.
It's an Ostomy Cruise! Enjoy a relaxing yet exciting vacation cruise with a bonus! Attend lectures, join in exciting activities, meet other ostomates, and check out the latest new products! Find out more at our next meeting, or go to:www.travelwithcindy.com. You can also contact Cindy directly at Cruise Planners; Phone 904-806-2067 or Email Cindy@travelwithcindy.com
Do you have a little extra room? On occasion, we might need to temporarily store ostomy supplies. (It must be a clean and climate controlled environment). For information, please contact: supplies@oagohome.org.
"Ostomy Speak"
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. 

Appliance 

We are not talking about washers and dryers; we’re referring to the type of wafer and bag (pouching system) you have chosen to collect the stool or urine from the stoma. This could be a one-piece, two-piece, drainable, closed, etc.

Pancaking

Despite our best efforts, sometimes stool (poop) doesn’t drop neatly down into the bag/pouch but smooshes itself around the stoma and under the wafer forming what looks like a flat round pancake (hence the name). This buildup can actually cause the bag to pull away from the wafer or skin, causing a leak or blowout.

Barbie Butt

This is a humorous term for not so humorous procedure, a proctectomy – the complete removal of the rectum and anus. This refers to the fact that just like “Barbie” (the doll)  there will be no longer be a “hole” in one’s bottom. For men, this is referred to as a “Ken Butt.” 

Look for a new set of terms next month. If you have any suggestions, please E-mail: newsletter@oagohome.org.

UOAA
UOAA 2019 NATIONAL CONFERENCE
UOAA’S 7th National Conference will be held in Philadelphia, from August 6th through August 10th. This is a fantastic opportunity to meet with ostomates from all over the country (and world). Attend interesting and informative lectures, join in fun social events, and explore the latest ostomy products and innovations from vendors.

For more information, just "click" the bell. Do you want to know more from members who have attended in the past? Check out the conference's Facebook Event Page.
Our Supporters

Thank you sponsors, donors, and advertisers. Your support of OAGO allows us to reach out to fellow ostomates and provide quality information and programs.
Clip, Print, or Save
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.