OCTOBER 2019
General Announcements
NOVEMBER 17TH 2019*
AdventHealth-Winter Park
Conference Center
Second Floor
Sunday 2:00 P.M

*Our October meeting was held, on Sunday October 15th. Although our newsletter was delayed, hopefully everyone received our meeting announcement.
We look forward to seeing everyone in November!
NOVEMBER 17TH PROGRAM
The program for our November meeting will be two-fold. The first half will be a "round robin" of sharing and visiting, discussing current issues,and getting to know each other a little better. The second half of the meeting will be elections of new officers and committee members for January 2020. This will allow for a smoother transition as new officers work side-by-side with current officers, to learn their new roles "hands on."
PRESIDENT'S MESSAGE
Greetings Everyone,

First may I say thank you to all of the new guests who have attended our meetings during the past few months. I truly hope you found our group helpful and will join us as official "OAGO" members. We are an ever growing and ever changing group – those who have had ostomies for literally decades; those who are relatively new to this “life;” and those who have not yet had surgery. We exist and thrive not because of the presence of one of these groups, but because of the existence of all three. Our energy comes from a constant exchange of information, support, laughter, tears, and acts of good will. 

It is important to remember “whose” group this really is. It is ALL of ours. Each and every person gets to stand up and accept his or her role as a member. Every person has a unique gift or skill to offer. It doesn’t matter how long you’ve been an ostomate; it doesn’t matter if you can do a little or a lot. It only matters that you do something! You will find that making a commitment doesn’t have to be overwhelming (we understand, especially as ostomates, that life doesn’t always go according to plan). You are imminently qualified to use your intelligence, experience, creativity, compassion, and humor to do something, not only for the group, but for yourself. Trust me, the rewards, even for the simplest of tasks, are incredible.

Potential. This is our word going forward. There is so much we can do if we all work together. We may not be able to accomplish everything right away, but we are moving forward, gaining momentum every single day. The last section of this newsletter is dedicated to our future. Look into your hearts, and choose your own adventure. Remember that we are all in this together, and together there is nothing we cannot do.

Sincerely,
Erica Michaels
Have you paid your dues?
Our yearly membership is only $20.00 a year. We are a non-profit organization, so every penny is important. We need your support to continue to grow. If you haven't yet paid your dues, simply bring them to the next meeting or pay them right from our website www.oagohome.org. You can also mail them to: Patrick Rodgers, Treasurer, 309 E Citrus Street Altamonte Springs, FL 32701
MEMBER PORTRAIT
Your picture belongs here! Send us a picture and tell us your story. In addition to featuring our ostomates, we would love to highlight our caregivers! We'd also love to hear from our new members. If you are interested, please E-mail: [email protected].
VISITOR TRAINING CLASS!
Congratulations to our new UOAA certified Visitors: Gene Wilson, Helene Feldman, and Krista Johnson! And, a big thank you to Shelley Dittmer, our visitor supervisor and trainer. We met on Saturday, October 5th (appropriately "Ostomy Awareness Day") at the home of Erica Michaels. The training consisted of watching three excellent UOAA training videos, followed by extensive discussion and role playing exercises. (It is amazing how much even a seasoned ostomate can learn.) Our next training session will be held in January. If you are interested, please contact [email protected] to get your name on the list. This course is open to caregivers in addition to ostomates.
Last Month's Meeting Notes
Guest Speaker
Marcia Ehret from Coloplast
Our guest speaker was Marcia Ehret from Coloplast . She provided excellent information about some brand new ostomy products (complete with a full array of samples). Two important products were the   SenSura® Mio Convex Flip and the new New Brava® Ostomy Support Belt. As you've read, in previous newsletters, all stomas are technically "hernias." However, many ostomates develop further parastomal hernias that can drastically change the contours of one's body, from flat to a sizably round protrusion (even to the size of a melon). This contour makes it difficult to securely fit a traditionally flat flange to a round belly. The new "flip" is a petal shaped wafer the literally "flips" over to match your exact body shape.

Marcia also showed us the new Coloplast hernia support belt (it can be used even with other manufacturer's appliances). The belt can be used soon after surgery, in hopes of preventing hernias, during the initial healing process, or to provide comfort and support for pre-existing hernias. Two product enhancement include "pockets" that make the belt easier to put on and a simple template that allows you to match the ostomy bag opening to exactly where you need it.

Marcia also introduced us to the Coloplast Care Program . This is a free support program that provides excellent information and an opportunity to talk with an expert about all issues "ostomy." For more information about these products or programs, just click on the highlighted words and the newsletter will take you right there! (Don't forget to tell them what a great job Marcia Ehret did!)
Look forward to meeting speakers from additional manufactures next spring!
Ostomy Hurricane Relief to the Bahamas
Thank you everyone who donated supplies to our fellow ostomates in the Bahamas. We delivered two entire carloads ($1000's of dollars worth of products) to Florida Paints in Oviedo (thank you for serving as a collection point) where they were ultimately picked up and dispersed through a supervising medical organization. We are currently refilling our "ostomy supply gift pantry" so please bring in any surplus supplies. Of course, Jack and Carol-Ann, we couldn't do it without you! For pick-up or delivery questions, please E-mail Jack or Krista at [email protected] or [email protected].
Would You Like a Name Tag?
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: [email protected].
Monthly Fund Raiser!

We are looking for fundraiser ideas! If you know of any companies that will host “online” fundraisers, please let us know. Or, if you have your own business, or work for a company that would like to donate goods or services as a raffle prize, that would be great as well!
"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.
Mucus (Drainage)
Most people assume that once you have a stoma, nothing should come out of your anus (butt). Depending upon whether you have an intact rectum or not, this is not necessarily true. Your rectum still thrives as before, and one of its functions is to create mucus (which is used to make the passing of stool easier). Even though no “stool” is coming out, occasionally, the mucus builds up and is released (yes, it would be nice if someone had warned us!). It is usually pale in color and its consistency can range from liquid, waxy, or almost solid. People often feel an uncomfortable need to “push” or may feel “constipated.” Some people will use a gentle suppository (i.e. Pedialax, etc.) to ease the process – but you should check with your doctor first. You can also wear a sanitary napkin (yes, men too), to feel more secure against leakage. Each person is different and you may find this event is cyclical (every few weeks, months, etc.). A little tinge of blood may be present; however, if there is a significant amount of blood or the odor is severe, please consult your physician.
Mucous Fistula (with a “loop” transverse colostomy )
Most colostomates think of stomas in the singular (one stoma per belly!). However, this is not always true. In some cases, the surgeon may choose to create two side-by-side stomas; one is strictly for stool and the other is strictly for mucous. The production of mucous is a normal function of the intestines that helps protect against corrosive output and eases the flow of stool. The creation of a mucous fistula (opening) is common in loop transverse colostomies. Sometimes the opening appears as one stoma (but with two separate openings) and other times two distinct stomas are created, with their own opening through the abdomen. In both cases “effluent” is collected in an ostomy pouch (appliance).
Find Your Passion
In the President's Message we discussed how important it is for everyone to find a way to use his or her special talents to help OAGO reach its full potential. It doesn't matter whether you want to immerse yourself in the role of an officer, edit a newsletter, direct a project, serve on a committee, offer advice, or become a financial donor - we need you.

That being said, we have to be honest about who we are. Some of us have more time and energy and some have less; some are leaders and some are followers. Some of us are "tech" savvy and some of us do not even own a computer. Some have easy access to transportation and others do not.
Some of us can "financially" supplement a project while others must struggle to pay for their supplies. Some are Ol' Timers and some are Newbies. It does not matter! Every single person has something of value to contribute... together we can do " stomany" amazing things!

Although we will fill the positions of President, Vice-president, Secretary, Treasure, Historian, we will also divide these/their responsibilities into smaller "tasks" so no one person has everything resting on his or her shoulders. We will be building "teams" so we can job share. Thanks to Google Docs (kudos to Krista and Kelli-Anne for setting them up), we will be able to share materials and communicate in real time, so it won't matter how far away you live from your teammates. We have compiled a simple-to-follow SOP manual (standard operating procedures) for every job, including any necessary contact information or templates. Although new positions start in January, our current officers and board members will "mentor" their new counterparts, so no one feels unprepared or overwhelmed. We are "twinning" our artifacts (we won't have one set of name tags, signs, etc., we'll have two), so if one team member cannot attend a meeting, the other one can. Most importantly, we will make new friends, have fun, be creative, and watch our group grow.

Below is a quick list of "Tasks"... Just find the one(s) you like the best. If you have any questions, just E-mail [email protected] and we'll get back to you as soon as we can!

1. Refreshments Committee (Shelley has offered to do this, but needs helpers!)
Make sure there are light snacks and beverages at all meetings. Water bottles will be budgeted for, but there should be a volunteer list to donate/bring snacks and clean up after the meeting. You will receive a carrying cart to transport the tablecloth, paper goods, etc.

2. Donation Collection and Pickup 
(Jack is the grand master of this, and Krista has been covering the south/west areas.) Ideally, there should be someone on this committee for each quadrant of Orlando. Your E-mail address will privately be attached to our website and/or you will receive forwarded phone calls. People will contact you as to what types of supplies they’d like to donate. You will arrange a convenient (and safe) time (for both of you) for pickup. We have tax receipts already printed. You will also collect and sort any donations brought to the meetings.

3. Supply Delivery (Shelley, Jack, and Krista have been doing this).
When physically able, the recipient will pick up their supplies at a time and place that is convenient for both of you. However, many of the people needing supplies are physically unable to travel. We will make every effort to get them what they need, at no cost. Occasionally, we need to mail supplies. If this is the case, we ask the recipient to pay postage. (Or, we can ask for a postage donor.)

4. Greeter/Name Tags – We will have duplicates of all materials. 
Greet all new guests and make them feel welcome! Make sure everyone signs in. Keep an up-to-date set of name tags and bring them to every meeting. Keep an accurate attendance list (make sure everyone signs it and updates any necessary information), display print material (Tri-folds, magnets, etc.) and give all new members a new member packet.

5. Signage – We’ll have two separate sets available.
Put up and take down OAGO signs for our meetings. Signs are already made and laminated (and tape, magnets, and suction cups will be available.

6. Contact List Coordinator (computer knowledge is necessary i.e. Word or Google Docs)
This is VERY important and a great job for someone who is detail oriented (or who would like to help by may not be able to attend all meetings). You will coordinate our current membership list with our incoming E-mail list, phone message list, meeting attendance, and Constant Contact newsletter contact list.

7. FaceBook Administrator (Currently Krista and Erica)
We are still in our infant stage, but hopefully we will get as many members as possible to join so they can have support 24/7. Our rules are already in place. The administrator will verify members, delete inappropriate material, and post announcements.

8. Fundraising (will work in tandem with our Treasurer, currently Patrick Rodgers)
Find online fundraisers, monthly raffle items, meeting 50/50’s. Supervise UOAA conference fundraiser, and plan at least one fundraising event a year (if possible). Collect all money/tickets at meetings and turn cash over to the treasurer. Keep list of the fundraisers for the year (template is available) so we can decide which ones to repeat in the future. Coordinate with secretary so she/he can write thank you notes.

9. Librarian (A travel cart will be provided)
Find new books about ostomies (informational, biographical, magazines, articles, etc.) Bring materials to each meeting. Create a simple check out system. 

10. New Patient Packets
Create packets and distribute them at meetings. In addition to excellent materials supplied by UOAA (keep track of when we need to order more), all of our own documents are available in template form.

11. New Product Guru
Search the web, publications, etc. to find new products. Report and demonstrate. Ask for samples and raffle them later at meetings! (We regularly receive samples from vendors through UOAA) but there are great products all over the world! Don’t forget to think outside the box (i.e. storage container ideas, etc.)

12. Newsletter Editor (Requires @ 10 hours a month)
This is a BIG job, but we’ve streamlined it considerably through our use of Constant Contact. You will be thoroughly trained and we’ve created a simple to follow format. This job can be shared with a separate proof reader, an article collector, and an “outside” newsletter reader (other ASG groups will share ideas and content with us).

13. Phone Chain Coordinator
Call members with no computer access to inform them ahead of time of meetings, activities, or other changes. Notify members in case of an emergency.

14. Photographer
Attend meetings and events. Take pictures of members and activities, save photos on our Google Docs photo page, get permission for posting when necessary. Capture the fun and include as many members as possible.

15. Pictures, Tables, and Charts Finder
Collect and collate helpful pictures, diagrams, etc. for our newsletter and website page. Add to the “wish” list of information we know we need (i.e. nutrition charts, body parts, etc.)

16. Political Activist
Keep track of any legislation that can affect us. Keep copies of Ostomy Bill of Rights, TSA information; make a directory of all local government offices that could/would benefit ostomates.

17. Publicity Director
Create a master list and table of all possible contacts. Place ads in all free publications (Everybody''s Business, etc.). Make sure information is up-to-date. Prepare items for feature articles. 

18. Rack Jobber (Physically get our materials to as many places as possible)
Hand deliver all OAGO print materials (to hospitals, doctor offices, public libraries, nursing homes, etc.) Keep an up-to-date list of all drop-off points (name, address, phone, E-mail, dates of delivery, etc.)

19. Social Director (Restaurants)
Set up at least one Pop-up per month. Make sure to rotate days, times, prices, and locations to cover all of Greater Orlando. Contact website coordinator to include information at least 3 days before any event. Either invite our photographer or send him/her pictures from your phone.

20. Social Director (Activities)
Look into securing group prices for concerts, shows, movies, etc. Post all these events on our Facebook page. Make sure everyone pays ahead of time so OAGO is not responsible for no shows.

21. Sunshine Committee (We will supply stationery)
Keep track of people who need support. Send cards. Put info into newsletter or Facebook when appropriate (only with member’s permission), provide follow up calls. Try to "check in" at least once a month with members and past members who simply can no longer make it to meetings. They still need and deserve support and friendship.

22. Transportation Director
A number of our members do not have access to a car, or are unable to drive and therefore cannot attend meetings. Although we will not always be able to assure a ride, we would like to put together a “Car Pool” team to help whenever they can. Divide city by zip code and find volunteer drivers. 

23. Youth Rally Director (Summer camp program for ostomy teens)
Research the program and become our group advocate. Give a yearly presentation, make sure we provide scholarship money (yearly). Work with fundraising chairman for a designated fundraiser.

24. Ostomy Awareness Day – Share information on the date (traditionally in October) 
Keep the group up-to-date on any special events (or create one of our own). Perhaps have a T-shirt making contest or meeting. Contact our publicity committee about making the information public.

25. YouTube Screener 
Create a master list of important ostomy topics (the entire membership can help with this) and find the best YouTube videos for our newsletter and website. 

26. Emergency Worker Bees
Create a master list of last minute volunteers. Help with last minute tasks, errands, sorting, etc. Volunteers can always say no, so this committee should be as large as possible. This would be a great “in addition to commitment, not an “instead of.”) 

27. Donors (You can be recognized or you may remain anonymous*) 
If you are truly not able to donate time, we always need and appreciate additional financial support. You can make a donation to the general fund, or you can “adopt a cause” – such as Youth Rally scholarships or refreshments for off-site presentations. Volunteer to pay for postage, marketing materials, special events, dues for those who cannot afford them, office supplies, etc. * In either scenario, you are entitled to a tax receipt since we are a non-profit.

28. Director of Program Expansion (DOPE) (Erica Michaels has volunteered for this job!)
Explore new ways to promote and expand our mission. Prepare presentations for medical professionals, care givers, possible new ASGs (affiliated support groups), and other community programs. Work on long-term programs and materials so they’re ready when we need them. (This is not a one person job, but it’s more important to fill the other positions first.)
I know the list above is extensive,
but please don't let us "scare" you away!


Thank you Kimberly Bobbitt for allowing us to use this photo.


BOOK CORNER
We have just added three new books to our OAGO Library!  Courage Takes Guts by Lois Fink, Crohn’s In terrupted: Living Life Triumphantly, and Crohn’s Interrupted – 7 Steps to Love Your Ostomy by Makeda Armorer-Wade. Book checkouts and returns are available at the end of each meeting. Plus, you will soon be able to share your thoughts about what you’ve read on our Facebook Page! (Are your our next librarian?)
UOAA United Ostomy Association of America
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.
Member News
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 [email protected]. and we'll try to get the information into our next newsletter.
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.
Your Business Belongs Here!
(Special Rates for OAGO members)
Phoenix Magazine is a fantastic publication for ostomates and their families.
Click above to find out more!
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.