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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed

 

 

Written by: Brenda Elsagher, Director of Affiliated Support Group (ASG) Affairs, United Ostomy Association of America

Support. I’m not talking about my bra, although it could win an Oscar for a supporting role! I’m talking about the kind of encouragement you get from knowing another person with an ostomy.

I freaked out when I was 39 and had to have a colostomy. I wanted a point of reference and needed to talk to someone who had a stoma. I wanted to know what to expect; I wanted to prepare my body and mind for the changes coming my way. There was no internet and no social media. I didn’t even know there was any other kind of ostomy besides a colostomy.

My Wound, Ostomy, and Continence Nurse (WOCN) was a great source of comfort. She calmly explained, without horror, that excrement (OK, I think she actually said “stool” – and I wouldn’t have used either of those words) would be coming out of my abdomen and into a bag that would somehow adhere to my body.

She made it sound like it would become so natural, as if I was adding a quart of milk to my shopping list. No big deal. You’ll get this in no time at all. And she said all of this with a confident smile – a genuine one, not a fake one like when people are trying to help you through something awful. I felt she meant it! So, I let myself believe her.

During one of my subsequent visits to her office, I saw a newsletter that listed a meeting time for people living with ostomies. I went to the meeting, and realized that this was my tribe. For many attendees, these gatherings were the only ostomy support they had, other than their loved ones who tried to understand but could never quite get it. Besides, here were people I could eat a meal with while talking about changing ostomy pouches. You can’t do that with every crowd! I met life-long friends at those meetings, and that was an unexpected perk.

Then I heard of a conference, the United Ostomy Associations of America (UOAA) national conference, where people came from all over the USA, and some from Canada and other countries too. It featured classes, social events, great speakers, and time to get to know more people with ostomies. A young man I talked to recently told me that he met someone at the 2009 conference who changed his life and made all the difference. If we only knew the power of a quiet conversation and how its impact can be phenomenal. We can be a resource for one another. That’s why I suggest regular telephone check-ins or video calls with UOAA Affiliated Support Groups (ASGs), because both can play a crucial role in helping someone feel connected.

I also found information galore and updates on the latest innovative technology for people with ostomies in The Phoenix magazine (the official publication of the UOAA), which still exists today. Not long after, I got America Online (AOL) and felt like I was on the forefront of technology. I had a computer, and now the internet. Imagine horns blasting – my world opened up and the exchange of information worldwide was awesome. Even more ways to communicate! A woman in Colorado who read my book, “If the Battle is Over, Why am I Still In Uniform,” emailed me, decided to get a colonoscopy, and was spared from cancer. That is a satisfying feeling, to know you gave up a year of your life to write a book and it saved another.

I began to speak across the USA. Who would have thought that 25 years later I am still talking about bowels and butts, or dare I say the lack of them in some cases? The people I have met, the conversations I have had, the opportunities that have come my way – all because I chose to meet with a small group of people. That experience led to an abundance of support, not only for me but for others I know with ostomies or continent diversions, because of all that we shared. Some shared their misery, some shared their success, and some listened, learned, and began to feel that they could deal with their situations. Finding the group was life enhancing, and even life-saving in many cases. I kept coming to help others, but have been helped in return many times over. A phrase that I often heard at the meetings was, “Someone reached out to me in the hospital, and I want to do the same.”

In my new role as the UOAA Director of ASG Affairs, I have come full circle as a volunteer. I meet so many people across the USA that are actively reaching out to others, and helping them on their paths to recovery of mind, body, and spirit. I am their cheerleader. Sometimes I can offer a suggestion or teach them how to use Zoom to stay connected. I have always known that the UOAA had our backs but I have now found so many more resources on their website that I never knew existed. There are over 300 ostomy support groups in the USA for people with ostomies and continent diversions. And for people who don’t like to go to group meetings, there is an individual membership too that gives them full access to an abundance of resources.

There is no right way or wrong way to have an ostomy. You don’t have to shout it out to the world, but there also is no reason to be ashamed about it. I honor your privacy, and thank you for honoring my desire to be public. Both are good. We are alive and grateful!

 

This article originated in the Hollister Secure Start services eNewsletter. For more ostomy resources at your fingertips, subscribe here.

Brenda Elsagher is an author, international speaker, and comedian, and also volunteers with the UOAA. She has been living well with an ostomy for 25 years. Find out more about Brenda at www.livingandlaughing.com, and follow her on Facebook @BrendaElsagher. 

Financial Disclosure: Brenda Elsagher received compensation from Hollister Incorporated for her contribution to this article.

 

Editor’s note: This article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Give back to those in need with a gift to sustain this website and programs such as the Ostomy Patient Visiting Program

Gina Day, left, an ostomy nurse and affiliated support group leader confers with Certified Ostomy Visitor, Tim Slutter “It really takes another ostomate to help reassure new ostomates they are not alone and there are many others out there living a normal life. I hear time and time again how important this program is in making patients comfortable having an ostomy,” Tim says.

Imagine if everyone dealing with the emotions and physical changes of ostomy surgery could see a friendly face before them in their hospital room? Someone who knows what they are going through from their own experience and can tell them things will be alright – that they too can thrive in life with an ostomy. Someone who can listen to their feelings and make them feel less alone in those vulnerable first days.

Donate Today

UOAA’s Ostomy Patient Visiting Program is one of the most important services we provide through our over 300 Affiliated Support Groups (ASG). This program offers person-to-person support, reassurance and practical information to those who have or will have ostomy related surgery and their caregivers. Ostomy visitors who have completed UOAA’s Certified Visitors Training Course through their ASG will have a clear understanding of their role and responsibilities, and will strive to be a central member of the ostomy patient’s rehabilitation team (includes the surgeon, WOC nurse, hospital floor nurse and ostomy visitor.)

Your gift will enable UOAA to continue to provide services, such as this website filled with trusted information, and our Ostomy Patient Visiting Program. One of our goals is to update the certification course training manual and instructional video, and make the training program more internet-friendly which is critical to its future success. With the estimated 100,000 ostomy surgeries performed annually, it is vital for ASGs to have access to an up-to-date course to teach key skills to those who would like to become certified ostomy visitors. Click to donate.

 

 

 

 

 

 

 

 

 

This is your opportunity to make a difference, providing a vision of hope and reassurance to new ostomates and their caregivers that they are not alone. Thank you for your support.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax-deductible. For more information about giving to UOAA click here.
Please think of UOAA in your year-end giving plans and this #GivingTuesday.

 

 

 

 

 

 

 

 

 

 

 

 

 

Summer is quickly approaching and before you know it we will be in Philadelphia at UOAA’s 7th National Conference. With so many new and exciting things planned it is sure to be the best ever! I know whenever I attend a conference I plan well in advance and create my own personal schedule to ensure I do and see all that is of particular interest to me.  This includes conference sessions, social activities and taking some time for local sightseeing in a place I may never have been before. I also always go out of my way to try a new food or beverage native to a particular city or state and in this case it will be an iconic “Philly cheesesteak”.   

As UOAA’s Advocacy Manager I’m very excited that this conference is being held in Philadelphia, a city so very rich in history and quite frankly home to our country’s first advocates.  Here is my twist on ways you can take advantage of this city and our conference, if you have a soft spot for things “advocacy”-related:

  1. Be sure to sign UOAA’s Ostomy and Continent Diversion Patient Bill of Rights during Exhibit Hall hours at the UOAA booth. These signatures will be collected for potential use in advocacy efforts to improve quality in ostomy health care. You also can see one of the 12 surviving original copies of the US Bill of Rights at the National Constitution Center while in Philadelphia.
  2. Pay tribute to our country’s first advocates and visit the Independence National Historic Park to walk in Independence Hall where our founding fathers signed the Declaration of Independence on July 4, 1776.
  3. Celebrate your independence and and see the most famous cracked bell in American history – the Liberty Bell.  You can see it for free at the landmark Liberty Bell Center.
  4. Calling all superheroes!  On Wednesday, August 7th at 2:45 pm attend the UOAA Advocacy Session United Ostomy Advocates to the Rescue”! Come hear first-hand from some of UOAA’s advocates on how they use their “superpowers”, and also learn more about current advocacy efforts underway at UOAA. Leave our national conference empowered to make a positive difference!
  5. Many times in advocacy we face an uphill battle and feel like an underdog. For decades now Philly has been known for the ultimate underdog tale in the Rocky movie series. Show your resilience and run/climb the infamous Rocky stairs at the Philadelphia Museum of Art.  There are 72 stone steps and at the top you can chant “Yo, Philadelphia! I did it!”. Or you can take a picture at the statue of this legendary “Italian Stallion” located near the bottom of the steps.
  6. Philadelphia is known as the “City of Brotherly Love”.  Show your love for the ostomy community and go to Love Park to get a picture at the “LOVE” statue designed by Robert Indiana.

    Love park

  7. Be sure to stop by UOAA’s booth in the Exhibit Hall to pick up some of our self-advocacy tools and educational resources for use when you get back home in your own advocacy efforts.
  8. When it comes to advocacy and activists I can’t think of a more wiser and inspiring person than the fascinating and influential Benjamin Franklin! Not only was he one of the founding fathers of the United States, but he was an author, politician, postmaster, printer, inventor, scientist, diplomat and statesman. Of interest to the ostomy community is that he was the inventor of the flexible urinary catheter and founded the first public hospital!  If you have time, visit the Franklin Science Museum or just drive by the Benjamin Franklin Bridge. As an advocate I am inspired by so many of his famous quotes. I often say the key to advocacy is not only raising awareness and educating others, but also patience and perseverance.  Here are a few of my favorite quotes by Ben Franklin:

“Tell me and I forget, teach me and I may remember, involve me and I learn.”

“He that can have patience can have what he will.”

“Justice will not be served until those who are unaffected are as outraged as those who are.”

“Energy and persistence conquer all things.”

    9) On Saturday, August 10th, at 2:15PM, please pop-in to contribute to UOAA’s first-ever research study by completing a short survey.  This data will help us make improvements to the underserved ostomy population. Upon doing so, you will also be entered into a drawing to win a prize!

   10) Join us during the conference Closing Ceremony at 3:30PM on Saturday, August 10th where we will be recognizing for the first-time the top advocate in the ostomy community! The Mighty Advocate Award, sponsored by UOAA, is a new biennial award intended to honor one individual for his/her significant accomplishments and contributions to support UOAA advocacy efforts and/or has brought greater ostomy awareness in the United States. Your presence will help make this a special moment in our advocacy history!

 

In conclusion, I’m excited to put a name to the face of the many advocates who have emailed me or have worked with me on advocacy efforts over the past couple of years, and meeting more of the people we strive to make an impact every day in our work at UOAA. See you in Philly!

UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.

The Benefits of Giving Back In Spite of Your Health Challenges

By Lynn Wolfson

We all want to feel like valuable members of our community. However, many times we are held back by personal issues, lack of time or just a complete lack of knowledge on how to contribute to help others. For those who have not had the experience, they do not know the emotional elation that one gets by helping others.

Let me tell you a little about myself. I was born with a genetic disease that prevents my digestive track from functioning as it should. Consequently, I am fed through my heart (Total Parental Nutrition), I defecate into a pouch attached to my abdomen and I catheterize to urinate four times a day. All of this medical equipment did take me years to accept and learn to take care of on my own. However, once I learned, accepted and had my independence back, I wanted to give back to my community.

I started by participating in my local UOAA affiliated ostomy support group. I attended national ostomy conferences and met many people who also had ostomies. I then joined the Digestive Disease National Coalition in Washington, DC and learned how to lobby for Bills which are needed for the digestive disease community on Capitol Hill. There I met many people active in the digestive disease community and joined The Oley Foundation.

Lynn Wolfson is assisted by her service dog Zev as she travels for advocacy and conferences around the country. Lynn has battled Hirshprung’s disease since childhood.

After several years of attending national conferences with the United Ostomy Associations of America, The Oley Foundation, and The Digestive Disease National Coalition, I decided to create my own support group. I named it: The Weston Ostomy Tube Feeding Group. The group meets monthly from August to May and discusses many important issues regarding people with ostomies and enteral/parental patients.

Then I decided I wanted to help my local community. I started going to the Jewish Community Center and learning how to knit hats for cancer patients. I had not knitted since I was a little girl. I was not too optimistic since I have tremors. However, the ladies in the group taught me how to knit on a loom. I now make beautiful hats which I donate weekly to cancer patients. I was really feeling proud of myself.

One week there was a senior fair in the ballroom at the JCC while I was in my knitting group. I took a break from my knitting to go and check out the senior fair. While walking around the fair, I saw “Jet Express” and I stopped and asked about it. I was told that this was a service which the Goodman Jewish Family Services provided to seniors for $100 a year. The service is to pick up seniors and to bring them to medical appointments, shopping or social engagements. They needed volunteers to pick up these seniors. This sounded like fun to me. I called up Pam at Jet Express and signed up.

Since signing up, I have enjoyed taking seniors to medical appointments, the beauty salon, shopping or just spending the afternoon with a senior going wherever they would like. I find the seniors so interesting. I have one senior that has lived in Florida since the 1950s and she tells me what South Florida was like when she first came. Some seniors are here alone. Their children live out of state and they are lonely. I have one senior who I take out to lunch weekly. I find I learn so much from these seniors and I bring them home so happy. As happy as they feel, I always feel happier that I could do this for them.

Left, UOAA Advocacy Manager Jeanine Gleba with ,right, Lynn Wolfson taking part in the DDNC Day on Capitol Hill.

I then found out about The Cupboard – the kosher pantry which services individuals or families who cannot afford groceries, and Holocaust Survivors. The Cupboard is also part of the Goodman Jewish Family Services. I go to the Cupboard weekly to take grocery orders from the clients and help deliver the groceries. Since I cannot carry due to my medical equipment, I have a partner who can carry the groceries when I am delivering. I do the driving. Again, I really enjoy meeting and talking with all the clients. They are so appreciative of everything we do for them!

Many of the clients who are having a difficult time, emotionally, physically or financially are so elated when they see us, as they know they are not alone. I know for myself, that each one of us was given a “deck of cards” on life and there is no one that has received a perfect deck. We all have “rotten” cards. Those people that can overcome these “rotten cards” will be the most successful and happiest. However, as humans, we all need a hand in helping us to overcome our individual challenges.

Once we can master our personal challenges, there is no greater joy than giving back to others. Helping others helps each of us to love life even more and appreciate our individual gifts. Life is a matter of attitude. Those with a positive attitude can not only overcome their own challenges but also help others do the same.