Tag Archive for: ostomy education

People often wonder what to say to others, especially to children or grandchildren, when they first learn about an ostomy. While what kids ask can sometimes be surprising, their sincerity can brighten your day. Hollister Incorporated brought kids and ostomates together to learn about stomas for the first time. Hear what they had to say by watching this video –

About the Ostomates:

LeeAnne Hayden @leeannehayden

LeeAnne Hayden stepped away from a successful corporate sales career to build an online social selling business at age 40, and then was diagnosed with a rare form of cancer, which resulted in ostomy surgery. This would serve as her wake-up call to find ways to help herself and others overcome the stigma of living with an ostomy. Now, at age 50, LeeAnne has created a podcast called The Beautiful Bag. Read more about her story here.

Stephanie Bension @missbension

In 2004, when Stephanie was in high school, she was diagnosed with a combination of Crohn’s disease and ulcerative colitis. At 24 years old, she found herself in the emergency room faced with the reality of receiving an ileostomy. With time and support from her family, she started to share her story with others on social media. She is now a professional speaker who charms diverse audiences. She holds a degree in Radio-Television-Film from The University of Texas at Austin, which has allowed her to have unique experiences in several professional fields. You can learn more about her at www.stephaniebension.com.

Collin Jarvis @collinjarvis

Collin Jarvis was diagnosed with ulcerative colitis when he was a junior at the University of California, Berkeley. His body rejected drug treatment to the point where he lost 30 pounds and was sleeping 15 hours a day. Due to this, he underwent emergency ostomy surgery with the removal of his colon. Barely five years after his ostomy surgery, however, the news headlines screamed: “Collin Jarvis Runs Sub-2:30 in One of the Fastest Marathons Ever With an Ostomy.” As evidenced by his marathon-running success, Collin now has the wind at his back and a whole new purpose in life, including being vice president of Stealth Belt, an ostomy support belt manufacturer.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

Walk Through that Door and You Might Surprise Yourself

 

By Ellyn Mantell

There are support groups for many issues but until I, myself, was in need, I never gave much thought to what they can provide. We have seen representations on television and in the movies, and they seem to have merit, but I have learned that they can be a lifesaver, or at the very least, a way to begin to live a life.

During all of the over 20 years that I suffered from constant bowel obstructions and abdominal surgeries, I longed for others to tell me “it would be alright.” But there were no “others” to be found…nobody seemed to have what I had, and therefore, I could never ask what I could do, what did he/she do to live a fuller life? And then I had my ileostomy, and everything changed. After my 23rd abdominal surgery,  something happened that hadn’t happened before…I now had the name of something that could actually garner support, and I took to it like a duck to water!

My ostomy nurse, Angela Natale-Ryan invited me to the Union County Ostomy Support Group in New Jersey, and I was quick to take advantage. Little did I know that, fast-forward, I would find a home for myself, become president for the past five years, and go on to start other support groups. But that is only one piece of the wonderful puzzle I find myself putting together. As president, my name is given to those in need who call the American Cancer Society, or United Ostomy Association of America, or even the local hospitals. The connection I have to so many reaches into every interaction I have, since each new encounter teaches me something.

As much as we are all individuals, new members are frightened and worried, hesitant to walk through a new door, and filled with misconceptions. Letting someone know “it will be alright” because we have all been through it, is invaluable. And most importantly, we welcome each new member of the group with open arms.

At the beginning of our meetings, we go around the (ever-growing) group and say our names and type of ostomy we have, and if we are new ostomates. Additionally, I ask if anyone has any issues that they would like discussed, and we will circle back to those after everyone has a chance to introduce themselves. Our Wound Ostomy Continence nurses address the medical concerns, and we discuss lifestyle concerns with each other.

I have garnered a wealth of knowledge about the medical, the physical and daily life of living with ostomies. I also now know where to gain more information and knowledge when needed. Rarely does too much surprise me in those areas over these past five years. But I am so appreciative, and feel forever treated to the magnificence of the human spirit, as I see the emotional growth that takes place as we lean on each other for support, and I can count on that!

 

United Ostomy Associations of America (UOAA) has over 300 Affiliated Support Groups around the country. To find support and information near you click here. To start or affiliate an existing group with UOAA click here

By Ed Pfueller, UOAA

Amazing things can happen when ostomy patient advocates and clinicians come together.

Dr. Neilanjan Nandi, MD an IBD specialist at Hahnemann University Hospital in Philadelphia, trained in cities across the country and has long observed that “physicians were not comfortable with stoma care and troubleshooting as we should be.” “I learned early on the importance of knowing as much as possible by working with my patients.”

He decided to organize the hospital’s first “Hands On Ostomy Workshop” to empower his medical students, residents, and gastroenterology fellows with formal education.

To help bridge this gap with patients Hahnemann Outpatient WOC nurse Josephine Catanarzo suggested connecting the program with leaders of the Philadelphia’s UOAA Affiliated Support Group.

Stanley Cooper and the Philadelphia Ostomy Association, that is celebrating 70 years of service, and have a long history of talking to nursing students. They viewed this as another opportunity to bridge the gap between patients and those who serve them.

“The surgical staff and fellows got to hear directly from our engaging and dynamic patient panel about their experiences medically and personally with a stoma. This was the MOST profound aspect of the entire workshop. You can learn the medical and surgical nuances in textbooks. BUT you cannot understand the psychosocial impact unless you hear it directly and eloquently from our patients. Thank you to United Ostomy Associations of America patient advocates Sheldon, Stanley and the wonderful Stacey for taking he time to enlighten us!” Dr. Nandi says.

“We absolutely loved attending this,” Stanley says.  “For the Philadelphia Ostomy Association and UOAA it made Hahnemann aware that locally we have been in the Philadelphia area since 1949.  That we have a visiting service and that all our visitors are trained at a visitor’s training class that was developed by UOAA.  We had a lot of discussion on how today’s short hospital stays affect visits and a lot of times we can meet patients at their homes or at a restaurant for visits and that all helps in the patient’s rehabilitation.”

“Stanley was absolutely and overwhelmingly supportive of this initiative and brought in valuable educational resources courtesy of the UOAA for our surgical house staff. He was also able to provide us educational brochures to distribute to our patients as well,” Dr. Nandi says.

If you, your support group, or hospital is interested in some of UOAA’s educational guides you can view them here on ostomy.org or request printed materials, such as our New Ostomy Patient Guide. Our various Ostomy Patient Bill of Rights including practices for nurses to support their patients also help to educate and bridge the divides between patients and caregivers.

In addition to WOC nurses Josephine Catanarzo and Judi DiPerri  Hahnemann’s Colorectal surgeon David Stein was also invited to be a part of the workshop. Dr. Stein discussed what is involved in stoma site mapping and planning. The nurses shared clinical pearls on troubleshooting and application of ostomies.

“This was  truly was an amazing program!” Dr. Nandi says. “We learned about their individual stories and experiences with an ostomy and how they have continued to be true patient advocates within our greater community.”

One of Dr. Nandi’s patients Stacey Cavanaugh also provided her unique patient experience to the group.

“At our next event we are taking a suggestion from Anastasia, or Stacey, as she is affectionately known, and planning to have our docs wear an ostomy appliance for a day filled with fluid and to write about their experience and share it with the group. I think it will be more than novel and truly insightful for our young, and old! learners to gather. I also hope to invite other fellowship programs to attend our next ostomy workshop too.”

It’s inspiring what a few committed medical professionals and ostomy patients can do when they come together. Consider reaching out and bridging the gap where you live or work.

 

You can hear Dr. Nandi speak at this summer’s UOAA National Conference or connect with him on social media @fitwitmd  

To get involved with your local support group click here or follow our advocacy initiatives for other ways to make an impact.

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.

Tag Archive for: ostomy education

“2022 Vision: Ostomates in Action”
The Ostomy Support Group of Northern Virginia, LLC (OSGNV, LLC) and its satellite, Mary Washington Healthcare Ostomy Connections Support Group, Fredericksburg, VA, invite you to attend a One-Day Virtual Conference on Saturday, April 30, 2022 from 9am to 2pm Eastern Time. The conference includes three general sessions, an exhibit hall and three breakout sessions by ostomy type. CLICK HERE for more information or email osgnvllc@cox.net.

Coloplast Care Live! is a new webinar series designed to bring together fellow ostomates and experts in the ostomy field to share their health journeys, hear inspiring stories from other ostomates, and share product and lifestyle advice. The third live webinar of this series, “Guide to Recovery Through Activity – A Gradual Approach for Ostomates” will be held on Tuesday, November 16th starting at 6pm Central, 7pm Eastern Time. Attend and learn from seasoned ostomates on what helped them during their own recovery, how they are now helping others, and core exercise tips you can incorporate in your own life. CLICK HERE for complete details and register today!

This year marks the 20th Anniversary of the Advances in Inflammatory Bowel Diseases (AIBD) conference! Let’s reunite for 3 days of real-world clinical education, comprehensive case studies, new evidence-based approaches in IBD management, and access to leading experts from around the world who are essential to providing optimal treatment strategies for patients with IBD.

In association with American College of Gastroenterology, this event will be held in-person and virtually on December 9-11, 2021 at the Rosen Shingle Creek Hotel in Orlando, Florida.

A special Ostomy 201 Workshop will be presented by a member of UOAA’s Medical Advisory Board, Dr. Neil Nandi, MD, FACP along with Janice Colwell, APRN, CWOCN, Tina Aswani Omprakash, and Gaylyn Henderson. Mark you calendar to attend this session on Friday, December 10th from 12:45 to 1:45 p.m.

AIBD welcomes all members in the IBD field—gastroenterologists, nurses, physicians, surgeons, and other healthcare professionals—to take part in this all-encompassing event, dedicated to providing practicing clinicians the tools they need to stay current in the ever-evolving field of IBD.

CLICK HERE to learn more and Register Today!

The Central Kansas Ostomy Support Group and Mid-America Wound Healing Society (in conjunction with the Society’s annual conference) invite ostomates and their significant others to an Ostomy Fair, Light Supper and Speakers!

The event will take place on Thursday, October 21st from 5:00 to 8:00 PM Central Time at Saint Vincent de Paul Church located at 123 N. Andover Road in Andover, Kansas. The evening will include time to interact with vendors, a light supper, two guest speakers and networking opportunities. Please RSVP by emailing Lynne Kempton at centralksostomy@yahoo.com or text Valerie Klaassen at 316-799-9456 by October 15th.

Ever wonder how age, culture, sexual orientation, gender, or socioeconomic status impact the #ostomy experience?

With this year’s #WorldOstomyDay focused on #ostomate rights being #humanrights, Girls With Guts (GWG) and UOAA have teamed up to explore this question and more as we host a chat on the intersectional aspects of living with #IBD and an ostomy.

Join us on Monday, September 27th from 8-9pm EST / 5-6pm PST when UOAA Patient Advisor & GWG Community Connection Liaison, Tina Aswani-Omprakash (South Asian Crohn’s & ostomy advocate), will host Jenice Diaz (Afro/Indo Latina Crohn’s & ostomy advocate), Jeanne Dagna (#LGBTQ Crohn’s & ostomy advocate), and Diana Boogaard (Vietnamese #IBDMom and UC, #jpouch & ostomy advocate)!

Whether you are new to the community or have been living with an ostomy and/or IBD for years, this is a powerful conversation you won’t want to miss! Join us on FB LIVE on www.facebook.com/ibdgirls or www.facebook.com/UOAAinc!

#IBDgirls #UOAA #GWGCC #IBD #UlcerativeColitis #Crohns #IBDWarrior #diversity #inclusion #OstomyRights #WorldOstomyDay2021 #MyAccessMatters

At Elephants and Tea, we want to have conversations on topics that are not talked about enough, ostomies are no exception. Our mission to help adolescent and young adult (AYA) patients, survivors and caregivers know they are not alone in their fight with cancer. The Elephant in the room is cancer. Tea is the relief conversation provides.

Please join us on Tuesday, October 5th at 7:30 PM Eastern Time, 6:30 PM Central Time for our online event – “A Community Conversation: Ostomies and Cancer”.  This online event will include a panel of patients (including Molly Atwater with UOAA) and healthcare professionals. The panelists will dive into various cancer diagnoses that can lead to ostomies, and share their personal experiences to show others how ostomies have helped them live their best life while facing cancer.

CLICK HERE to learn more and Register Today!

 

Creating Connections Within The Ostomy Community!

Coloplast Care Live! invites you to attend this new webinar “Finding your fit – creating connections with your ostomy community” on Tuesday, September 28th at 7pm Eastern Time, 6pm Central Time. Come hear from a panelists of ostomy related associations and find a community to fit your needs. Panelists will describe their organization and how you can get connected for support, get involved in events, and find resources they offer.

Be inspired by others who can relate to your situation; Feel empowered in your ostomy journey to learn more about your condition; Help others by sharing with other communities; Stay connected to other resources which may fit your lifestyle; Gain confidence by discovering activities and events for people with similar conditions; Join social network groups to stay engaged and learn new tips!

CLICK HERE to learn more and Register Today!

You’re invited to attend The WCET® (World Council of Enterostomal Therapists) Education Webinar presentations and special sponsor videos from October 28th to November 30th 2020. The WCET® Worldwide Education Webinar distinguished faculty hail from 11 different countries and from six continents. This truly international tri-specialty event features experts and nurses from around the world presenting on various topics within the wound, continence and ostomy care fields.  CLICK HERE to learn more and Register Today!

This is a free one-hour ZOOM presentation being held twice on October 2nd – See links below to register for the 2:00 PM to 3:00 PM EDT or 4:00 PM to 5:00 PM EDT presentation. Space is limited, so register today!

As a proud supporter of Ostomy Awareness Day, Byram Healthcare, in cooperation with UOAA, is offering a free one-hour educational program through the ZOOM platform on “HOW TO EFFECTIVELY REFER PATIENTS TO AN OSTOMY MEDICAL SUPPLIER.” This program is designed for healthcare providers. Your questions will be answered about the information being presented through ZOOM Chat.

Registration Links:

October 2nd at 2:00 PM – 3:00 PM EDT – https://zoom.us/j/98918243709?pwd=VVZWeDVjWFRNRDh6VVRNemJDQ2xkUT09

October 2nd at 4:00 PM – 5:00 PM EDT – https://zoom.us/j/96380099985?pwd=Z2tqMFpreld2bTA1ZmxUU1h4dzJDQT09

This is a free one-hour ZOOM presentation being held twice on October 1st – See links below to register for the 11:30 AM to 12:30 PM EDT or 2:30 PM to 3:30 PM EDT presentation. Space is limited, so register today!

As a proud supporter of Ostomy Awareness Day, Byram Healthcare, in cooperation with UOAA, is offering a free one-hour educational program through the ZOOM platform on “HOW TO NAVIGATE INSURANCE AND MAKE SURE YOU GET THE OSTOMY SUPPLIES YOU NEED AFFORDABLY.” This program is designed for a person with an ostomy and their caregiver(s). Your questions will be answered about the information being presented through ZOOM Chat.

Registration Links:

October 1st from 11:30 AM – 12:30 PM EDT – https://zoom.us/j/98154764001?pwd=VTNuOExtUlBwcy9jZHZKUDUrSElNdz09

October 1st from 2:30 PM – 3:30 PM EDT – https://zoom.us/j/97925474883?pwd=cjRsNnBQc2s4L2hmcTBKNW5SM25nUT09