10 Advocacy Happenings Await You at UOAA’s National Conference

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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!

Intestines Are Soooooo Overrated

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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.

You Can Always Learn Something New

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By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

“As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

“I have learned more in these few days than I have in the almost 6 years with my permanent ostomy.” – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.

Ostomy Camaraderie

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UOAA’s National Conference the perfect place to bond

By Karin (Newbieostomy)

Ostomies don’t discriminate, it doesn’t matter your gender, sex, sexual orientation, race, ethnicity, religious beliefs, age, attitude toward life, social status, diet, or activity level. Whoever you are and wherever you come from, if you have an ostomy, you have something in common with 725,000 to 1,000,000 other Americans and a huge number of other people across the world. If you have an ostomy, you’ve probably experienced the anxiety, fear, and stages of grief that come with such a life-changing surgery. You may have experienced feelings of isolation, loneliness and despair, concern that your life was never going to be the same and that no one could possibly understand what you’ve gone through.

Karin and friends at the last UOAA National Conference in Irvine, California in 2017. A fashion show and dancing will again close out this year’s conference in Philadelphia Aug. 6-10.

It’s true that your life might never be the same, but it can absolutely be better. And it’s true that while only you have experienced your experiences, there are a ton of other people who can empathize and identify with what you’ve gone through by relating it to the similar experiences they’ve endured (and vice versa). United Ostomy Associations of America (UOAA) National Conference offers opportunities to meet these people face to face and when that happens, magic happens.

“I like figuring things out for myself. I just always figured this as my fight and nobody else is going to do it for me, so why go to a conference. However, I realized that I actually did have some unanswered questions and more than anything I was curious to see what I could learn at the conference. I’m glad I went, because all of my questions were answered, I made some new friends who share an immediate, strong connection and I found new courage and perspective that I didn’t realize was missing from my life.” – Nathan, first timer

Nathan has had his ostomy for seven years and still had questions. Good thing he came and got them answered! His “this is my fight” attitude is not unique to him (sorry, Nathan!). It may be your fight, but you don’t have to fight alone, and I think that’s a huge thing that people realize once they attend the conference. A perfect segue into one of my favorite parts of the conference: the unbreakable, timeless, instant bonds and friendships.

“I would say the most powerful aspect of the conference, that I was not expecting going into it, was how close everyone there seemed to be. It was my first UOAA conference, so I wasn’t sure exactly what to expect, but as soon as I got there (you) came up to introduce yourself, and within a few minutes we had a group that was speaking openly about anything and everything that came to mind.”

As a fairly introverted person who can often be quite clumsy when first starting a new conversation/friendship, I found the welcoming environment of everyone I met to be the highlight for me. The instant level of understanding between everyone was pretty special.” – Collin, first timer

At the UOAA conference, it’s like a weight is lifted, allowing people to candidly talk about the emotions, struggles, and achievements they’ve experienced. These people who were strangers a moment ago have an uncanny ability to say things that make you think “Yes! That! That’s exactly how I feel!” — An instant bond is created.

“[At UOAA’s Conference] I had no idea what to expect and went in knowing no one. When I got there I was quickly met by a girl who seemed around my age and had more energy and joy then I thought was even possible when first meeting someone. Her name is Alyssa and she instantly welcomed me to the “group”. My initial thought was I have no idea who these people are and she knows all of them and I am going to be the outsider. But I was totally wrong! I was welcomed and accepted by everyone instantly and next thing I know I am sitting in the pool with them, attending meals together, and exploring the conference together.

I learned that attending this conference was crucial to understanding myself, I learned that I can be myself still even though I have an ostomy and that my ostomy doesn’t hold me back or define me. We all talked openly about our struggles, which made me realize I am to the only going through the hard times, but most importantly we talked about the good things that have happened and come from our ostomy. We also talked about things having nothing to do with having an ostomy, and personally, I think when you can do both you have met a really good friend, they want to know who you are as a person not just who you are because you have an ostomy. Meeting this group of people was one of the most valuable things that happened at the conference.

Overall this conference was a life changing experience and I would really encourage anyone who has not attended one before to go to one. I think it is super important for younger ostomates because it gives you a chance to meet other people your age and just ask questions.” –Mallory, first timer

It was no surprise to me that Nathan, Collin and Mallory all had such positive things to say about their social experiences at the conference, because I had the same experiences at my first conference and again in 2017 (where I got to meet each of them)! We come to the conference for knowledge, but we keep coming back for the camaraderie.

UOAA’s National Conference is held every two years so while you may have missed the last one in Irvine, California, registration is now open for the 7th National Conference in Philadelphia from August 6-10, 2019.