FEBRUARY 2019
General Announcements
FEBRUARY 16th MEETING (Room Change!)
Our February 16th Meeting is still at Winter Park Hospital, however, Winter Park Hospital is now officially "AdventHealth Winter Park." Signage is already changing, so don't be alarmed. In addition, please note that our February Meeting will be held in Dining Room "A" (close to the cafeteria).

There is no valet parking on Saturdays. However, should you need wheelchair accommodations, from the main entrance to our meeting room, please contact us support@oagohome.org or call 407-603-5088, before Friday, and we'll make arrangements.
PRESIDENT'S MESSAGE
Greetings Everyone,

I apologize for not being able to attend the last meeting, but I am SO grateful that the meeting was such a tremendous success. Thank you, thank you, for all of you who made this possible.

You opened doors, arranged the room, and provided refreshments. You educated us and shared your urostomy experiences (and one great teacher even “dropped his drawers”). You elected a slate of new officers, shared information about an ostomy cruise, and collected dues (plus additional donations!). Most importantly, you made sure our new guests felt welcome. This is exactly what OAGO is about – support, information, and outreach.

Please notice that our February meeting room has changed, once again, to Dining Room A. Hopefully, we will be back in the Conference Center for our March 16th meeting. Our seemingly frequent room changes reflect changes going on within the hospital itself. Winter Park Hospital is now AdventHealth of Winter Park. Old buildings are coming down; new buildings are being erected. The hospital’s need for space during this transition, must come first.  

We have been the guests of WPH for many years, and they still want to support us in any way they can. It has been suggested, that next year we might want to change our meeting dates and times to Sunday afternoons, since there will be much less competition for space. This is just a suggestion, but one that merits thought and discussion. 

I hope to be at our February meeting, but I know that if I ever have to miss a meeting in the future, we’re well covered!

Yours truly,
Erica Michaels

A very special personal thank you to: Terry Sneiderman, Susan Sneiderman, Jack Vreeland, Shibbir Adam, Eileen Glasco, Shelley Dittmer, Krista Johnson, Kelli-Ann Wallace, And…You!
FEBRUARY 16TH MEETING - OSTOMY FASHION or "BAG? WHAT BAG?"
One of the biggest questions after ostomy surgery is, "What can I wear?" Seasoned ostomates know that there are many wonderful options out there that allow us to be comfortable with our appliances, yet still express our own sense of fashion and style.

We'll explore all types of clothing from protective, to sexy; from recreational to professional. Do you have a favorite website ( www.cspouchcovers.com), clothing manufacturer ( www.untuckit.com, or catalog ( www.womanwithin) that you use? Please bring this information with you!

We will also have some of the most attractive and interesting models - YOU! Please bring, wear, and/or share your favorite fashion clothing, tips, or tricks. (This is just as important for the men in our group as it is for the women.)

*There will be a prize drawing for a custom made pouch cover!
OSTOMY SUPPLY DONATIONS - Ostomy Supply Gift Room
What is the Ostomy Supply Gift Room?

An important role of OAGO is to collect donated ostomy supplies and distribute them to fellow ostomates who need them. Although we do not have an actual "room," thanks to the volunteer efforts of our members, we have a support program that facilitates this exchange.

Where do donated supplies come from?

We are receiving more and more ostomy supplies every week. Some supplies come from ostomates who have had reversals, some from people who have received incorrect or excessive supplies from their insurance companies, and some, sadly, from family members of ostomates who have passed away.

What types of supplies to we receive?

We receive all types of supplies, for every type of ostomate - pouches and wafers (all different brands, sizes, and shapes), barrier rings, gloves, wound care products, etc. Although not everything comes in a box, everything must be new and in excellent condition.

On occasion, we have received (or have been offered) non-ostomy medical supplies. Jack Vreeland has tried, graciously and tirelessly, to arrange for placement of items such as oxygen tanks, wheel chairs, and once - even a hospital bed! We are in the process of trying to create an exchange with other medical non-profits so that pick up and delivery will not fall on any one person's shoulders. However, this might not be accomplished for many months. If you are interested in helping us with this, please let us know.

Where are these supplies stored?

Previously, these supplies have been collected by Shabbir Adam, Shelley Ditmer, and Jack Vreeland and stored in their homes. (At one time in the past, we even paid for a storage locker - right now this is cost prohibitive.) Shabbir personally shipped supplies to countries where ostmates were desperately in need. Unfortunately, due to current bureaucratic requirements, this is no longer an option. A recent move and downsizing has limited Shelley's available storage space, so a large shipment of supplies was recently sent to a fellow ostomy association better equipped to handle distribution.

We are still maintaining, as best we can, a healthy, but reasonable amount of supplies, for our local community. Our new vice-president and secretary respectively, Krista and Kelli, have offered to store and distribute new supplies to the south and west neighborhoods surrounding Orlando. Jack is still collecting supplies for the north and east neighborhoods. However, since we never can tell when we will have a sudden surplus or deficit of donations, it is very important that we have a backup storage space. Please, let us know if you have available space in your home, garage, or storage locker that you can share with us. The space must be clean, cleared, and somewhat climate controlled. We will supply large organized and labeled plastic containers to keep our items (and your space) as neat as possible. If you can help with this, please E-mail donations@oagohome.org or supplies@oagohome.org.

Who gets these supplies?

Many of us are fortunate enough to have quality insurance, but some of our members have limited coverage (for example, only 10 bags a month). Other members have no coverage at all; imagine having to purchase all your supplies out of pocket! We also receive distress calls from visitors to Disney or other attractions, who have run out of supplies and/or local residents who have received defective products and are in a panic. Of course, we live in Florida, and must always be ready for the occasional hurricane.

How much do we charge for supplies?

All of our supply donations are just that...donations. We do not charge. If you are truly in need of donated supplies, please contact supplies@oagohome.org. and we will help you if at all possible. We are also trying to put together a "wish list" (a form will be available at the next meeting). If we suddenly have a surplus of specific items we know you can use, we would love to supply them to you, rather than store them.

How can I pickup/receive my donated supplies?

It is easiest if you pick up your supplies at one of our meetings. Or, you can E-mail supplies@oagohome.org to arrange for pick-up or delivery.

How can I donate supplies?

First, thank you for sharing! If you have excess supplies that you would like to donate, the easiest thing to do would be to bring them to a meeting. Please be sure items are new, sealed, or boxed when possible. Please bring them in a box, bin, or bag to make them easy to carry. Please note that all donations are tax deductible; if you would like a copy of our form, please be sure that your donation contains your name and contact information. If you are unable to make a meeting and would like to arrange for a pickup, please E-mail: donations@oagohome.org.

Still have questions? Just E-mail support@oagohome.org.
Member Portraits
LORI COHEN
At 14, I was diagnosed with Ulcerative Colitis. As an adolescent, it was difficult to say the least. I spent half of my freshman year on “hospital homebound” and rarely did anything other than study or stay home. After years of trying every available medication (up to 21 pills a day) and still feeling horrible, I decided enough was enough.  

On July 20, 2000, at the age of 17, I checked into the hospital for a total colectomy with an ileostomy. I remember asking my mom if I could change my mind because I was scared. She said it was my choice, but to remember that today was going to be the first day of the rest of my life. I knew she was right; I was tired of being sick.  

I remember waking up in recovery and being told by my surgeon that everything went well, but when he had lifted up my colon, my appendix had started to perforate, so he removed that too. Just a few days earlier, I had complained to my mother that my lower right side hurt and joked, “Maybe I have appendicitis, too.” The pain diminished a little while later, and my mom reminded me that everything was coming out on Thursday, anyway. When they were wheeling me to my room, I remember my mom putting her hand on mine and saying that I did great; she was so proud of me. My reply? “Told you so!” At first, she was confused, but in that moment, she knew I was going to be okay.

At first, I didn’t want to look at my ostomy. I wasn’t ready. When the doctors and nurses would come in to examine the 40-staple incision down my abdomen and my new ostomy sight, I would turn away and close my eyes. It freaked me out to think of my intestine on the outside of my body. I was a 17-year-old teenager who just wanted to be “normal.” A few days later, a nursing student came to change my ostomy bag, and from what I had learned prior to my surgery, I knew she just wasn’t doing it right. I told her to stop and took over. Instinct and the need to make sure things were done correctly, finally put me into the driver’s seat. From that point on, looking at my stoma was never an issue. Was it completely easy? No. Was it up to me to advocate for myself and make sure things were done correctly? Absolutely!

My ostomy took a lot of getting used to in the beginning. My appliance would leak every single day, if not more than once a day. I was frustrated, scared, angry, and felt overwhelmed. What person wants to be covered in stool all the time! It took three home health nurses until I finally got an experienced ostomy nurse who helped me find the right fitting appliance and helped me regain my life. Once I had the right pouch and changing system in place, I was good to go.

My ostomy surgery had taken place three weeks before my senior year of high school was about to begin, and I was still very weak and in pain. My mom told me that there were only two days of high school that really mattered, the first day and graduation day. My mom quit her job to stay home and take care of me. She pushed me to school in a wheelchair. I made it through the whole first day, but was beyond exhausted. The school was overwhelmingly supportive and allowed me to come for alternating half days. For three weeks, I was pushed around in a wheelchair, and although it was very hard to be looked at as “different,” I was happy to be at school. I was able to attend my first homecoming and prom that year. I was able to hang out with friends, go to football games, and feel like a teenager. It was nice to really feel alive for the first time in so many years.
I lived with my ostomy for 11 years with a few leaks here and there, but overall it was a part of my life. I was able to attend college and even felt comfortable enough to leave home and transfer out of state for the remainder of my college career. After graduation, I worked teaching Head Start Preschool in Pittsburgh, then moved to NYC. In 2011, I decided to try for a j-pouch reconnection. It wasn’t because I was upset with my ostomy or still angry or in disgust, it was because I owed it to myself to try. On June 14, 2011, I once again checked into the hospital for surgery. I told myself that if it didn’t work, I would be okay. I had lived with my ileostomy for 11 years and I knew what to expect.  

I woke up from surgery - with a new ileostomy site. The surgery did not work. The doctor completed a proctectomy, removing my rectum (left in from the first surgery to allow for a possible reconnection) to eliminate the chance of developing rectal cancer, and moved my ileostomy. I was a little sad at first, but at least I had my life. I knew what ostomy life is like and I knew I could do that. Unfortunately, the recovery from my stoma revision surgery was not easy. I first developed an obstruction, within 48 hours of being discharged, and was readmitted into the hospital. A month later, I developed an abscess. I was readmitted, again, and put on my first wound vac. It was during this hospital visit that I was told about the local ostomy support group by one of the WOC nurses. Once I was discharged, I attended my first Ostomy Association of Greater Orlando meeting.  

In 2013, I developed a parastomal hernia. I found an AMAZING surgeon who repaired the hernia and put in strong mesh to help secure the surgical site. About four weeks later, over July 4th weekend, I developed another abscess at the surgical site. I knew, too well, the signs and symptoms, so I went to the doctor’s office (bags packed) certain they would admit me. I was right. The abscess was worse than expected, and I was back on a wound vac. 

It was at this time that I attended my first National Ostomy Conference – it was AMAZING! I was surrounded by my people. Nobody cast judgement or even asked questions as to why I was carrying a wound vac on my shoulder. I didn’t have to worry if my ostomy made noise or talk about having to change it. There were even WOC nurses who were able to help change my packing. I found a group of people I could “click” with, and hangout, and do things together until the wee hours of the night. It was like going to a grown-up camp for the weekend.  

I became President of OAGO and led the group for about two years. I got a new job teaching kindergarten and realized I couldn’t dedicate the time needed to serve the group in the way I wanted to. It had been a great privilege and honor running the group. I met a lot of wonderful people and enjoyed helping others through their ostomy journey.  

Looking at my life today, I am grateful for my ileostomy. It gave me my life back and showed me how strong I can be. I can enjoy being social and traveling. I can hold down a full-time job and spend time with family and friends. I have been taught that I must be my own advocate and stand up for myself. My life now is “my normal.” I am happy to be alive and be able to tell my story. There were many times I came close to not being able to say that. 

Lori Cohen
Last Month's Meeting Notes
The topic of our January meeting was "Urostomies." Our guest speakers were our very own members Terry Sneiderman, Jack Vreeland, and Shabbir Adam. The program was not only informative, it was personal and heartfelt. While one aspect of the discussion included how to apply, clean, and maintain ostomy appliances, another aspect included the trials and tribulations (UTIs, etc.) of reaching the urostomy decision in the first place. In addition to several tips - using athletes foot spray on fungus irritations and ways of dealing with hernias, many people found the idea of "labeling the pouch with the date" a clever trick that could be used regardless of the type of ostomy. (This is why it's great that we're all one big ostomy family!)

Eileen Glasco provided more information on the ostomy cruise, Jack Vreeland and Shabbir Adam explained issues affecting supply donations and delivery (further information on these topics appear in other sections of this newsletter).

We also elected new officers! Congratulations to our new vice-president, Krista Johnson; our new secretary, Kelli-Ann Wallace; and our new historian, Bob Zuleeg. What a great year this is going to be!

This month, in addition to 18 regular members in attendance, we welcomed two new guests, Steve and Deb Gornoski.

-Taken from the notes of Kelli-Ann Wallace, Secretary
COMING ATTRACTIONS!
Program Volunteers (These programs will take place later in the year)

The response to our meeting on Urostomies was wonderful. We are in the process of preparing four additional programs. 1) Ileostomies, 2) colostomies, 3) Ostomies as a result of cancer (whether directly or as a byproduct of chemo), 4) Ostomies as a result of Crohn's . If you would like to serve as a chairman, or be willing to sit on the program panel, please contact Erica Michaels (president@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.
OFFICER/BOARD MEMBER MEETING!
There will be an officer/board member meeting immediately following the February 16th general meeting. If you will be unable to attend, please contact Erica Michaels.
Monthly Fund Raiser! AVON
Each month, our newsletter is going to feature a quick and easy fundraiser. If you'd like participate, just "click" on the link below, and it will take you directly to the site. A percentage of the sales will be donated to OAGO and go directly into our general fund. Please note, this fundraiser doesn't become active until February 14th and will end on March 14th.

“Shop Ostomy Association of Greater Orlando's Avon fundraiser to show your support!"


Please feel free to copy this link into your Facebook Page and/or E-mail it to friends and family.
This month's fundraiser is through AVON and is being hosted by our own Karen Costa. If you're looking for a great gift for kids, check out the "bath slime!"
It's an Ostomy Cruise! This 7 day, Eastern Caribbean cruise will leave from Fort Lauderdale on May 18th, 2019 and return on the 25th. Not only will you enjoy a relaxing, yet exciting, journey with Princess Cruise lines, you'll have the opportunity to attend your choice of lectures, social activities, and product demonstrations, specifically designed for ostomates. A single room inside cabin will be $1600 (taxes not included). For further information, please go to: www.travelwithcindy.com. You can also contact Cindy directly at Cruise Planners; Phone 904-806-2067 or Email Cindy@travelwithcindy.com
"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. 

Fistula 

Many organs of the body rest right up against each other, but function separately. On occasion, an opening forms, connecting the two. For example, an ostomate might develop a fistula between the intestine and the skin (a sudden hole appears on the abdomen near the stoma) or between the vagina and the rectum (feces drain into the vaginal canal). Fistulas can be caused by infection, surgery, or injury, and some are even present from birth. Since they can be potentially harmful, they should be treated or repaired by a medical professional.

Hernia / parastomal hernia

By literal definition, all stomas are hernias because they are sections of the intestine that have protruded through the abdominal wall. However, with a parastomal hernia, more of the intestine than planned, sneaks through (even months after surgery) and causes an abnormal bulge. Often the bulge disappears when you lie flat and the intestine slips back where it belongs. Hernias may or may not cause pain or discomfort (especially right before they empty into your bag), but they do not go away on their own. Some ostomates find hernia belts can offer abdominal support. (This topic will be discussed at greater depth in one of our future meetings and newsletters.)

Crusting

Occasionally, the skin around the stoma becomes very raw and red (abraded) making it both difficult and painful to attach an appliance (wafer/bag). By applying several alternate layers of stoma powder (fine dry powder) and a barrier wipe (liquid spray or wipe) you can create a “crust.” This crust makes it easier to apply the wafer so it sticks better, causes less pain, and allows for healing underneath.  For further information go to www.youtube.com and enter “stoma crusting.” 

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.