Tag Archive for: ileostomy

“Funny how most people think an ostomy is the worst thing that could happen and I only see it as something that saved my life in so very many ways.”  Jeanne D. 

By Jeanine Gleba, Advocacy Manager

It’s such a simple truth – ostomies are life savers and yet, we continue to hear “I would rather die, then have an ostomy.”  That is why this year UOAA introduced the campaign “Operation Ostomy – A Life Saver”. Specifically, for Ostomy Awareness Day (OAD) held on October 5, 2019 the theme this year was fittingly “Ostomies Are Life-Savers”. It’s been exciting to see so many people embrace this theme from making custom life preservers to buying logo t-shirts for their entire families, to using #MyOstomyMyLifesaver to share their personal stories on social media, and educating others with this year’s infographic.

From Left, Gina Day, CWOCN and founder of the Ostomy Support Group of the Poconos and Advocacy Manager Jeanine Gleba pose with this year’s infographic banner at the East Stroudsburg, PA Run for Resilience on Ostomy Awareness Day.

For the second year in a row, our legislative champion was NJ Congressman Donald Payne as he introduced House Resolution 601 designating October 5th as National Ostomy Awareness Day. Furthermore, UOAA was honored to work with this year’s Ostomy Champion Grammy-Award winning recording artist Damon Little who has sung his way into our hearts by inviting all to celebrate and raise ostomy awareness in a video message.

UOAA had new ways to get involved with this special day including producing a new infographic that is available to download and print all year long at www.ostomy.org/ostomy-awareness-day/.   

This year for the first time the Centers for Medicare and Medicaid Services (CMS) recognized Ostomy Awareness Day in both their Medicare Learning Network and supplier newsletters. Also exciting was to have the support of the American Society of Colon and Rectal Surgeons (ASCRS) as they had a schedule of social media posts such as this one:

In addition, in 2019 we invited other organizations to collaborate with UOAA and had the privilege to raise ostomy awareness and engage the ostomy community during special events with these partners.  In case you missed the events, we are pleased to inform you that you can still tune into them virtually:

  • UOAA co-hosted with the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and Therezia Alchoufete, MS, RD, LDN to bring you a Twitter Chat on Nutritional Support for People Living with an Ostomy.  If you missed the live chat, you can read it all here.
  • UOAA partnered with the WOCN Society to promote and celebrate ostomy awareness day. Listen to UOAA Advocacy Chair Joanna Burgess-Stocks talk all things advocacy, ostomy awareness and so much more in this special WOCTalk podcast episode! 
  • UOAA had the pleasure of working with the Crohn’s and Colitis Foundation to bring you a very special Facebook Live event with Double Baggin’ It. You can still watch it and learn so much from this inspiring duo and their healthy perspectives of having ostomy surgery!

Each year we expand our outreach with this annual event and here are a few statistics from 2019 activities:

  • Our Advocacy Network contacted legislators in 24 states requesting proclamations for Ostomy Awareness Day. The following proclamations were passed in these 11 places

            * State of California           * State of Colorado           * State of Connecticut

            * State of Massachusetts  * State of Missouri           * State of New Jersey       

            * State of Ohio                    * State of Pennsylvania   * State of South Carolina  

            * Frederick City, MD           * Kennebunk, ME

• 139,442 impressions from the Twitter Chat with a reach of 22,830.

• Over 200 personal #MyOstomyMyLifesaver stories shared on Instagram, Facebook and Twitter.

• Over 900 people took part in eight Run for Resilience Ostomy 5k event locations and a Worldwide Virtual 5k. 125 volunteered to make these ostomy awareness events a huge success.

UOAA is most grateful to all in the ostomy community who partnered with us or promoted OAD in their corner of the United States.

We hope you’ll join us next year when the big day will be Saturday, October 3, 2020. It will be the 10th anniversary of celebrating National Ostomy Awareness Day!  So get ready for an even bigger celebration.

Although Ostomy Awareness Day has come and gone, its impact will continue to spread across the country with each and every one of us.  Look for more from UOAA for our new “Operation Ostomy – A Life-Saver” campaign to stop stigma and save more lives.

Editor’s note: UOAA’s National Conference was Aug. 6-10, 2019.

Hollister Incorporated is excited to be a part of the ostomy community event of the year. As a long-standing Platinum Sponsor of UOAA’s  National Conference, we have much in store for attendees at our educational sessions and exhibitor booth.

One of the most important elements of regaining and maintaining a healthy, comfortable lifestyle after ostomy surgery is about taking good care of the skin around the stoma. This year, we have introduced a variety of tools and resources to help you take your skin health into your own hands, like the Peristomal Skin Assessment Guide for Consumers and our interactive quiz uncovering facts about peristomal itching. You can get a sneak peek at our booth!

You also don’t have to figure things out on your own – we are here to help. Come meet the people behind Hollister Secure Start services, who can answer your questions and provide more information on the free personalized support that is available to you, regardless of the brand of products that you use.

Additionally, exclusive at the Hollister Booth #103, don’t forget to grab a copy of the ‘Special Edition’ Hollister Secure Start Services Newsletter featuring Danielle Gulden and Joe Teeters of Double Baggin’ It, who are hosting the Wednesday night Improv Comedy Show.
The week is packed with something for everyone so we hope you have fun and enjoy the conference.

See you in Philly!

Barbara Dale, RN, CWOCN, CHHN, COS-C
Director of WOC Services at Quality Home Health
Jeanine Gleba UOAA Advocacy Manager

I am a Wound, Ostomy, Continence (WOC) nurse in a rural home health agency. I have worked in the home health field since 2001. Many times when I visit patients in their homes, they complain about the lack of knowledgeable ostomy nurses in the facility (e.g., hospital) they came from or even from my own agency.  I try to explain to them that ostomy care is specialized and in general nurses don’t get much (if any) training in nursing school for this type of medical condition. I compare this with my own lack of IV education and skills since I rarely do labs or port flushes and have lost many of my previous skills. We can’t all know everything about all aspects of medical care and not every agency has access to an ostomy trained or ostomy certified medical provider. Nonetheless, it is the home health agency’s responsibility when they accept you as a patient to provide you the care you need and deserve. You have a right to quality care.

Are you aware of the patient bill of rights (PBOR) for persons with an ostomy or continent diversion? United Ostomy Associations of America (UOAA) developed the PBOR in 1977 and revised it in 2017. The PBOR is designed so that you can know what to expect and what is reasonable for you to ask for when you receive care. If you haven’t already looked over the PBOR, please take time to familiarize yourself. In addition, if you use ostomy or urological supplies, here is what you should understand and expect when receiving medical care in your home.

Be Prepared

Be prepared in advance to take appropriate steps to ensure you receive quality ostomy care.  As you prepare for discharge to home after your ostomy surgery, ask your case manager to make sure your home health agency has a certified ostomy nurse. This will also be important if you are a person already living with an ostomy with a new medical condition (such as hip surgery or a stroke).  Your home health nurse should re-evaluate your ostomy care. For example, someone with arthritis may have lost dexterity and now needs to switch to a different type of pouching application system or you may have gained or lost some weight over the hospitalization (which can change your abdominal contours and your stoma) and now your current system doesn’t give you 2-5 days wear time anymore.

Change Agencies if Needed

If you are already home and your home health agency does not have a certified ostomy nurse, then request that they consult with one to ensure that you receive the proper optimal care. I often get phone calls or emails from colleagues who work for other agencies asking me ostomy questions or asking if I can come to see their patient. We are all in this together and we all want what is best for the patient, which is YOU! Don’t be afraid to ask for an ostomy nurse!

You may even have to change agencies. It isn’t difficult even though your current agency will likely not want you to change.  You have a right to explain that you must receive your care from a certified ostomy nurse and your current agency, unfortunately, does not provide this type of care. All you have to do is call the agency YOU choose and tell them you want to transfer your care to their agency. Typically the new agency will contact your doctor or ask you to let your doctor know you want to change agencies. The new agency will then inform your current home health agency that they are taking over your care.  

What to do if an Ostomy Nurse is Still Not Available?

If all else fails and for whatever reason you have a home health agency without access to a certified ostomy nurse, you still have resources.  You can:

  • Go to www.wocn.org and look up a patient referral for an ostomy nurse in your area. This content also usually includes contact information for the WOC Nurse in your area.
  • Visit www.ostomy.org for educational resources such as the New Ostomy Patient Guide and UOAA has a dedicated webpage specifically for Ostomy Health Care Resources.
  • Use social media to find others that may be in the same situation as you. There are a multitude of Facebook pages/groups for ostomates with WOC nurses who follow these groups and offer comments or suggestions when specifically asked.

In Conclusion

We cannot say this enough: YOU have a right to quality care and deserve quality care. Know your rights. You deserve to be able to live your life to the fullest with your new or established ostomy.

Patients and medical professionals can work together to improve patient outcomes. If you want to help UOAA drive change and achieve ostomy quality of care improvements for patients while under home care, please print and share these resources with your home health agency: Achieve 5 Star Ostomy Home Health Care and Important Reminders for Home Health Providers Treating People with an Ostomy.

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.

By Jody Scardillo DNP RN ANP-BC CWOCN
Albany Medical Center- Albany, NY

The Issue

It’s amazing what can happen when a little effort is made.  In April of 2018, the insurer NY Medicaid decreased the allowable quantity for certain ostomy barriers from ten to eight per month.  This included extended wear barriers with and without built- in convexity. This affected many of our patients with ileostomies and urostomies, who required extended wear barriers and /or convexity due to the nature of the stoma or the output.

Most of these patients in my practice require appliance changes every three days even after optimizing the products and accessories they use. The other issue that came up with this is that the ostomy supplier would not break open a box and provide a partial amount, so any patient that used a product that was packaged in multiples of five only received 5 per month instead of the eight that they were approved for. The vendors in my practice were also not able to send alternating amounts.  Dispensing one box on one given month alternating with two boxes the next month was not an option. This would leave an ostomate with only five barriers per month. In reality, the ostomate had enough barriers for half of the month. The coverage for the pouches was twenty per month, which led to a mismatch of products with no solution.

The Success Story

We contacted NY Medicaid by phone and email and collaborated with them so they understood the issues, and the meaning of this for the ostomate.  As clinicians, we all knew this was going to severely impact skin condition and quality of life. After reviewing the information provided, New York Medicaid restored the monthly allowable back to ten barriers.

Lessons Learned

There were several important lessons I learned as a clinician as a result of this situation:

  • Be sure to provide the proper information with a question or request. For example, as a clinician I might describe a product “1-¾ inch cut to fit extended wear convex barrier”. However, the language used by insurers and supply vendors to describe a product is called the HCPCS code (Healthcare Common Procedure Coding System). A4409 is the HCPCS code for a commonly used extended wear convex barrier.
  • This particular insurer was very open to suggestion and willing to listen.  They reversed an important decision when they realized it was not in the best interest of the person with an ostomy. It can never hurt to advocate for yourself or your patient.  The worst thing that can happen is that a situation may not be changed.
  • Under NY Medicaid regulations for beneficiaries who are in need of quantities above the maximum allowable limits they can submit a “prior approval request”. Include a letter of medical necessity from ostomy care provider for the need over the limit.

So, what to do if you have problems with your ostomy supplies?  Reach out to your insurer, your ostomy care provider and your supplier to see what can be done to find a solution together.  You never know unless you try!

To share your advocacy success contact advocacy@ostomy.org

Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

Editor’s note: This educational 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.

Enjoy a trouble-free transit with these travel tips.

If you’re traveling by airplane, car, bus, train, or cruise ship, you might be stressed about your ostomy needs during the trip. Don’t worry. With a little preparation, everything can go smoothly.

It’s also a good idea to start with short trips away from home to build up your confidence. Once you’re reassured that your pouching system stays secure during normal day-to-day activities, you can start to venture farther.

Here are a few tips to help you be fully prepared and comfortable, no matter how you travel.

Luggage weight limits: Are you traveling by air with a lot of supplies? Check with your airline and your country’s federal travel agency (e.g., the Transportation Security Administration in the United States) for the luggage weight limit. Weigh the luggage before you go. It may be helpful to use a portable luggage scale. If you’re over the limit, check to see if your airline has a special allowance for medical supplies.

Forbidden items: The International Air Transport Association (IATA) forbids dangerous items on board airplanes. For example, ether, methylated spirits, or flammable aerosol adhesives and removers are considered fire hazards. Scissors also may not be allowed in carry-on luggage – check with your airline or pre-cut all of your skin barriers before traveling.

Pre-boarding security checks: At airports, your carry-on luggage will be inspected at the security baggage check before boarding. If you have medications, get a card from your healthcare professional that explains why you need them. Some countries do not allow certain medications, such as codeine, to cross their borders. A travel communications card from an ostomy association in your country may also be available. United Ostomy Associations of America (UOAA) offers a travel card to help you be ready for searches or checkpoint questions.

Using airplane toilets: During a long flight, there can be long lines for toilets, especially after meals. Be alert for a chance to use the toilet when most people are in their seats. It’s also a good idea to request a seat near a toilet.

Car travel: Your car seat belt should sit across your hip bone and pelvis, not your abdomen and stoma. If you want to give your stoma extra protection from the strap, you can buy a seat belt pad. You can also use an extension bracket to lower the angle of the belt across your body.

Cruising with a stoma: Are you worried about taking a river, lake, or ocean cruise? Don’t be. If you’ll be away from land for a few days or more, just pack double the supplies you need. Plus, follow these simple precautions and you’ll have a trouble-free voyage.

View or print the full PDF booklet Living with an Ostomy: Travel from Hollister.com.

For similar articles on traveling with an ostomy and other topics, visit the Hollister Ostomy Care Learning Center.

Editor’s note: This educational 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.

I was told if I didn’t have the surgery when I did, my Crohn’s disease would have killed me. Surgery made a drastic change in my life for the better. Now I will be around for my wife and kids.

I had a promising career in the United States Army, but that all quickly changed. In 2014 I was deployed to Afghanistan. During my deployment, I noticed something wasn’t right and started having a lot of stomach pains and other symptoms. At the time I didn’t think much about it. I was focused on the mission during my deployment. I always put my soldier’s needs before mine. So nine months went by and I came home in 2015. Still having these symptoms I was asked to do another deployment to Iraq. I took the deployment for another nine months. Towards the end of my deployment, I was in a lot of pain. Once I returned back home I finally saw a medical doctor. After several tests, I was diagnosed with Crohn’s disease. Later I started treatments, but nothing was working. As a result, I was medically discharged from the military in August 2016; whereupon, I continued my treatments back home in Dayton, Ohio. In December 2016, I was still in so much pain that I went to the emergency room for testing. When the doctor came back, he told me I needed to have emergency surgery. That December I had my first surgery and I went home with a permanent ostomy. It was a difficult transition back to civilian life and even more challenging now adapting to life with an ostomy.

I really struggled in the beginning. I felt alone trying to figure things out. I went from being in the best shape of my life from being in the military to gaining weight and being depressed. I even shut my family out. I didn’t think support would benefit me because in my mind they were civilians and not prior military service members. One day I woke up and realized this doesn’t have to be this way and turned it around. I did reach out to a few support groups on Facebook looking for advice and how people deal with having an ostomy pouch. I realized it wasn’t about the military anymore, but all of the support people out there are willing to give. My wife is my biggest supporter!

I’ve read so many articles about Crohn’s and ostomy pouches, but I haven’t really felt like anyone was affected in the military as much. Now I want to share my story. I reached out to UOAA because I hope to advocate for all military and their families that struggle through this. I want to be the one who is there for a fellow service member that when they find out they have this disease that they are not alone and even though you loved and enjoyed the military, there’s still a bright future outside of the military.

Even after two years I still struggle with the thought of having a “bag” and some pain, but I am able to stay active now and recently went back to doing what I love – getting fit, and being outdoors and hunting and fishing. I feel having an ostomy was a slight setback, but it was not the end. There are far worse things in life. So if me having to do this to save my life and be able to enjoy it, then I find that as my motivation to keep going. Most importantly, I’m no longer out with the constant bathroom trips and horrible pain that left me not being able to love life and spend time with my wife and kids.

Living with 2 Ostomies Since 1974

Jearlean Taylor has never known life without an ostomy. She has had two ostomies (colostomy and urostomy) since she was just two years old. But with the support of her family and her own inner drive, she triumphed to become a successful model, author and businessperson. Here she shares her story and offers ostomy fashion tips that work—both on and off the runway.

Dressing Up and Looking Great

Maybe you don’t want to be a fashion model. Maybe you just want to look good at your friend’s party this weekend. Here are some practical fashion tips Jearlean learned from the modeling business that work in everyday life, too.

When in doubt, try it on.

“Maybe not every outfit will work for your ostomy, but something will. If you like something, try it on. You may be surprised.”

You can make anything fashionable.

“Sometimes I throw on a scarf with an outfit. I might put a belt around my waist. Even when it may seem strange or crazy, I put an outfit on to see if it makes me feel confident.”

Find the right jeans.

“A lot of people want to get back in their jeans again. If you’re anxious to get back into jeans right after surgery, try maternity jeans; they stretch and put less pressure on your pouch as you get comfortable with your ostomy.”

Fashion-friendly wraps.

“Some ostomy wraps have a pocket on the inside that securely fits your pouch and keeps it flat against your abdomen to help relieve the pressure of your pouch filling. This is helpful when you’re wearing certain kinds of clothes.”

Feel good about yourself.

“No matter who you are, you’re beautiful. You’re carefully and wonderfully made. You’re a designer original. There’s nobody like you.”

 

Have questions about living with a colostomy, ileostomy or urostomy?

ConvaTec’s expert team of me+™ ostomy nurses and product specialists is only a phone call away.

Call: 1-800-422-8811 (M‍onday-F‍riday, 8‍:30am-7:‍00pm ET)

Email: cic@convatec.com

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. 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.

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.