It’s Ivan’s 4th Birthday!
Four years ago today my amazing doctors, Dr. Leslie Demars and Dr. Joga Ivatury removed a huge tumor out of my pelvis and I woke up ALIVE and in a colostomy which I named (Ivan) after Dr. Ivatury, for life.
The first thing I asked Dr. Ivatury when I woke up was “did we get the f#@%r?” He smiled and smiled and said yes.

The next thing I asked was “am I in a bag?” He reluctantly said “yes.” My reaction? “Ok now let’s get me out of here so we can go to California.” I was working on a Tyra Banks product line at the time and did not want to miss the opportunity.

I was not always so positive. When I found out I had cancer in 2015 and would possibly be in a colostomy bag for life, I was devastated, to the point where I told my doctor “do NOT put me in a bag” so many times that he had to yell at me and say I have been up nights thinking about your surgery, I have no intention of putting you in a bag HOWEVER my job is to SAVE YOUR LIFE. So well, he was right.

I had such a different view on life when I woke up. God left me here to do some work and I was not going to let HIM down by playing small. I was going to live my life HUGE and give back to this world as much as I can.

I did allow myself to have strong feelings and concerns. “What if it smells, or makes noises or someone bumps it?” I would cry after cancer, but life was not over yet. What am I supposed to learn from this lesson and from what I am going through? It took me a lot of work to get to be okay. We got this one life.

I got up and forced myself to get out anyway. It helped so much that my kids, parents, and sister along with my husband and friends were supportive of me along the way.

I wanted to get back to doing the things I had enjoyed before cancer. One love was competing in Fitness America and WBFF shows in 2010 and 2011, where I placed in the top five in one of the shows I did. I knew I needed to love my body again and decided to tell the world in a live video to let people know to love the body you were given.

LeeAnne Hayden competes with her colostomy pouch and all at the 2017 America Fitness weekend in Las Vegas.

I was talking with my husband and friends and said I think I want to compete with “Ivan.” The second it came out of my mouth everyone was so supportive. I was sponsored for my training, plane, suit, costume, all of it. When I got there after months of training I almost didn’t want to do it. However, I knew I couldn’t let my fear stop me, I had to show everyone what I preached. The costume was great. It was a pair of wings that I could open and expand. I was shaking when I took my first steps out on that stage, I took a deep breath and opened the wings, hit my pose and completely teared up when everyone in the audience stood up clapping, screaming and some of them were crying. (Gosh I am starting to cry writing this) It was the most surreal moment ever. I felt amazing and supported and forgot I even had Ivan while I hit all my posing and walked off the stage to my friends in the back screaming and hugging me. It is a moment I will never forget.

There is such a stigma to ostomies, I have heard stories of how people have given up their lives because they didn’t want to be in one. I think we all need to be more vocal about it. So many more people could be saved. Thank you to UOAA for what you do with ostomy awareness!

That’s the way I’ve spent these last four years and I can’t wait to see where my life goes from here! I want to bring everything I have personally been through to all of you so that you may grow and live the life you want and deserve! Huge thank you to my wonderful doctors, my amazing family, my friends, all of you, and especially to GOD for allowing me to remain.

Whatever you want to do in life hope you run for it.

 

LeeAnne Hayden blogs about her life here and produces the LeeAnne in the City Podcast.

2019 Advocacy Accomplishments We Can All be Proud of

By UOAA Advocacy Manager Jeanine Gleba

I pride myself on being an “action person” and nothing gives me greater satisfaction than checking those boxes and crossing off items on my lists to-do (daily, short-term, long-term etc) both in my personal life and professionally. So I get super excited at year-end when I can reflect and look back at all that UOAA has accomplished in our advocacy efforts!  I’m happy to report 2019 was not an exception. Although many priorities are ongoing and I can’t actually cross them off my list, I remind myself that Rome was not built in a day and realize to make a major impact in the health care world it could take many years. The important thing for all of us to remember is that we are making progress and positive change is happening.

UOAA Ostomy Advocates at the DDNC

Ostomy advocates at the DDNC Public Policy Forum in March.

Each year UOAA’s Advocacy Committee establishes annual goals based on the strategies outlined in UOAA’s Advocacy Agenda. We have learned that the needs of the ostomy community are fluid and more often than not, I find each year that new priorities must get added to the list. These goals and priorities keep us organized and ensure we stay focused on where we can have the most effect given our organization’s limited resources.

In no particular order and not an all-inclusive list below will give you an idea of what we worked on and accomplished in 2019. This does not include Ostomy Awareness Day efforts as they were previously shared: 

Completed the “Expect More: Take Control of Your Healthcare” self-advocacy toolkit with checklistsAll of the parts and resources are online here. In 2019 there were 579 downloads of the resources and the ostomy supply checklist had the most downloads at 247.

Best in Practice Research Project Launched – The purpose of this research project is to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and demonstrate best in practice standard guidelines for ostomy care. In 2019 we collected the data, in 2020 we will conduct the data analysis phase, publish results and ideally find ways to use the results to improve patient outcomes.

Centers for Medicare and Medicaid Services (CMS) Ostomy Supply Policy 

  • Conducted an online survey earlier and analyzed results to better understand the issue of obtaining greater than allowable quantities for those that have a medical necessity such as a high output stoma
  • Submitted comments and recommendations from UOAA to CMS for the Simplifying Documentation Initiative (SDI) and the Patients Over Paperwork Initiative to reduce burden as it relates to the ostomy supply process. 
  • We have a subcommittee comprised of medical professionals, manufacturer representatives, and patient advocates who will continue this effort in 2020.

Legislative Priorities 

  • Advocated on the Disability Integration Act (DIA), Removing Colorectal Screening Barriers, Ostomy Awareness Day, Step Therapy, and Competitive Bidding Program
  • Released two new position statements for DIA and Opioids
  • Supported the DDNC Step Therapy National Day of Advocacy

Additional Efforts to Expand Patient Bill of Rights

  • Safe n Simple is now including the PBOR Wallet Card in new ostomy patient starter kits and Byram Healthcare now includes it in their ostomy educational booklet

Further Advocacy Outreach and Collaborations 

  • Upfront with Ostomies Column: As a result of contacting the editor of the Wound Management Prevention journal UOAA now has its own column in this clinician journal.  5 articles were published in 2019
  • UOAA was invited by the CMS Quality organization to submit a new idea for the 2021 Improvement Activities used in the Merit-based Incentive Payment System. Ex-committee Member Barbara Dale and I submitted for consideration two modifications to existing improvement activities that focuses on re-evaluation of ostomy care and supplies
  • Access and Care Coalition: Successfully continued to ensure Congress refrains from expanding the Medicare Competitive Bidding program to include ostomy and urological supplies 
  • 3172 people downloaded the TSA Travel Communication Card
  • Started efforts with OEM of LAX airport in CA to make restroom improvements for ostomy accessibility; created UOAA guidelines for United States ostomy restroom accommodations 
  • Between myself and members of the Advocacy Committee we authored or contributed to 18 magazine and UOAA e-newsletter articles on advocacy-related topics

Looking forward to greater achievements in 2020!

Ostomy Strong and Giving Back on the Ice

By Ed Pfueller, UOAA Communications and Outreach Manager

In 2015 things were looking up for Justin Mirigliani. An active father of two, his ulcerative colitis symptoms were in remission. In his free time, he was an avid weightlifter and loved skiing and playing ice hockey.

He probably could have been forgiven if he wanted to skip his yearly colonoscopy, it was his 10th test since his ulcerative colitis diagnosis in 2002. But his doctor made sure he was scheduled, and he went in. It was a decision that likely saved his life. He discovered he had to have his entire large intestine removed due to a severe precancerous condition called high grade dysplasia. A video before his ileostomy surgery shows the raw feelings of this life-changing event and the video below shows his journey to healing and thriving.

Since that surgery on September 24, 2015, he has vowed to do all he can to help others who suffer with IBD and to help remove the stigma attached to those who have a “bag.” Justin is determined to show, through his active lifestyle, that nothing is impossible with an ostomy. Justin has given himself an epic challenge to prove this point. He has continued weightlifting and is trying to become the first ostomate to bench press 405 lbs. You can see this journey documented on his YouTube channel The Strongest Ostomate in the World. (Parastomal hernias are a risk for all ostomates so check with your doctor before starting any exercise regimen.)

Though Justin had developed a small bulge around his stoma very early on, he is careful to complete lifts that do not add excessive internal pressure, like deadlifts or squats. He wears a binder to help support the area around his stoma anytime he lifts anything remotely heavy. In the past four years of heavy bench pressing, shoulder pressing, and bicep work, there has been no change in the bulge around his stoma. So as not to neglect his legs, Justin runs flights of stairs with a weighted vest. As he says, “It’s just a matter of improvising.”

Justin has also given back to the IBD community by creating Checkmates Charitable Association. Checkmates’ main event is a yearly hockey game with NHL alumni. Recently Justin decided to expand his charity’s mission to also benefit the ostomy community. “The UOAA Conference in Philadelphia has definitely opened my heart to wanting to include UOAA and do anything I can to help our community,” Justin says.

In 2020 Checkmates is expanding its mission into Canada by sponsoring a “Disease Without Borders” International NHL Celebrity Hockey tournament with its first game this February in Toronto, Ontario. The winner of that tournament will come down to the U.S. to play the Checkmates team at the Philadelphia Flyers Skate Zone in Voorhees, New Jersey in April. Justin’s ultimate goal is to use this year as the template for NHL Celebrity Hockey games and tournaments throughout cities in the US and Canada.

Justin says of the fundraiser, “We will never stop striving to make the lives of those with IBD and those living with an ostomy the best lives they can be!”

Like any other nonprofit organization, Checkmates is always happy for helping hands. If you are interested in volunteering with Checkmates please contact Justin. Checkmates is also looking for hockey players who want to play on the same ice with NHL stars. Players must be 18 or older, be able to ice skate forward and backward and be able to shoot a hockey puck.

Justin is grateful to his doctors, who saved his life, he and his family created this PSA to warn everyone to get their colonoscopies. Please share it. It just may save a life!

Until IBD has been eradicated and every ostomate is properly cared for, Justin promises that Checkmates will be on the front lines fighting for these communities to the best of its abilities. Justin believes “No matter what, your illness or ostomy will not hold you back!”

 

 

By UOAA Advocacy Manager Jeanine Gleba

Pinky O’Neil attends the 2014 MSA Pageant in October in Atlantic City. The same year she had Ileostomy surgery in March.

“A boa can hide a belly bump, if you arrange it carefully!” Ms. Senior America (MSA) alum, Pinky O’Neil, explains to me. After the Advocacy Session at UOAA’s National Conference in August, I met this very spunky woman. She left my presentation motivated to share it with her Affiliated Support Group to get more involved with advocacy on the national level. Since conference I have learned more about the essence of this “great advocate of positivity”, who recently celebrated her 85th birthday!

Pinky has had her ileostomy since 2014. When she started her ostomy journey at the age of 79, she was not well-informed. Supplies and advice were not readily available to her. To get her questions answered and get back to living her very busy full life she joined an ostomy support group, attended the past three UOAA national conferences, reads the e-newsletter and Phoenix magazine, and asks questions of suppliers.

Pinky teaching her 85th Big Birthday Bash attendees “I Feel Lucky” Line dance.

As a woman who has experienced many devastating set-backs in life, she learned early how to get her groove back on. Eventually after her long surgery recovery, Pinky resumed activities such as hosting monthly Singles Club Block parties and directing The Villages Singles Club Got Talent performing group, and her favorite physical activity – dancing. Pinky has been dancing for decades even doing One Woman Shows “Skeletons in your Closet” and “Mama was a Swinger” and opening her own business “Dancing Around with Pinky O’Neil”. All of this dancing brought her to the national stage.

Pinky O’Neil, Honorary Senior America & Esmeralda Ybarra Hetrick, Ms. Senior America 2019 from Pennsylvania, Pinky’s home State at the 2019 MSA pageant at the Resorts Hotel & Casino in Atlantic City.

As a Ms. Senior America (MSA), Pinky, has been strutting her stuff for years on the pageant circuit! She was crowned Ms. Virginia Senior America (MVSA) title in 1996. She has been involved with MSA ever since including being the MVSA State Director for ten years and then the MSA Public Relations Director for another ten years. She was awarded the Honorary Senior America title in 2006. The Ms. Senior America Pageant is “the world’s first and foremost pageant to emphasize and give honor to women who have reached the Age of Elegance,” according to the Senior America Mission Statement.

 

Pinky shared with me, “Presently, I mentor, recruit, present orientations, visit various MSA Pageants as well as attend the yearly national pageant in Atlantic City, New Jersey. We perform there with the Queens Choir. I am a member of the National Senior Alumni Association (NSAA). We solo at the pageant Alumni Show as well as direct & host MSA Showcases at Veterans Hospitals & Retirement facilities in our home states around the USA and on cruise ships to make others feel happy and youthful!” In addition, “As PR Director, I initiated & hosted Two Showcases at The White House in 2000 and organized a MSA entourage to St. Thomas in 2011. There we performed several MSA Showcases and collaborated with the St. Thomas Tourism Department to provide assistance for the first Ms. Virgin Island’s Senior America to tour the Mainland pageants.”

Pinky is an advocate for ostomates, because it is her strong desire to be a role model to others and spread the word that ostomies are lifesavers and that you should not allow your ostomy to hide you. From traveling the world to walking the stage runway, this is one woman who does not let her ostomy stop her!

 

By Steven Berit

I fainted the first time I lost a tooth. Not from the actual pain of the removal, but from the sight of the blood dripping from my mouth. I also fainted during a health talk in the sixth grade. Most people would call me “squeamish,” and I would agree. The sight of blood or even the mention of anything related to the human body can easily send me into a spiral of emotions typically resulting in me waking up in the nurse’s office. So, you can imagine my apprehension when the doctors first suggested the idea of me receiving a colectomy.

Hi, I’m Steven Berit. I’m eighteen years old and I am a senior in high school. I live in Pennsylvania with my mom, my dad, and my sister when she is home from college. I live a pretty “normal” life. I go to school, play football, and hang out with friends just like anyone else my age would do. The only difference between me and everyone else is that I have an ostomy bag and they don’t. This small detail isn’t even noticeable for most, but at first, it certainly was noticeable to me.

I was sixteen when I was first diagnosed with ulcerative colitis. The next year and a half would be full of trial and error, and with each passing day the errors stuck out more and more. Mesalamine, Remicade, Entyvio, and Xeljanz were just a few of the never-ending drugs that I was prescribed. The only thing that seemed to be working was steroids, but both my doctors and my acne-ridden face agreed that this was not a permanent solution. Finally, in July of 2019 while in my latest stint on the 5th floor of the Children’s Hospital of Philadelphia, I made the decision to say good-bye to my very inflamed, friend- my colon.

I don’t remember much of the first night following the surgery, but the next couple of days stick out in my mind vividly. Well, I mean I clearly remember the restless nights. As for the actual stoma itself, this took me some time before I had my first encounter with it eye-to-eye or eye-to-intestine in this case. The second night was one of the worst nights of my life. I guess the anesthesia had worn off and with it came the regret. Yes, that second night I thought I made the biggest mistake of my life. There I laid in a hospital bed way too small for my eighteen-year-old frame contemplating if I could ever recover from this setback in my life.

Well, the sun rose and with it time for my first bag change. I remember screaming- a lot. They told me that the stoma couldn’t feel pain, but what they failed to mention was that I could still feel the pain of my hair ripping off my body as they pulled the adhesive off my skin. Trust me your average eighteen-year-old boy has plenty of hair to go around, but your eighteen-year-old boy that has been steroids for the last year and change has more hair than one would openly like to admit. But, as the bag came off, I got my first glimpse of my future in the form of a beautiful, red stump known as my stoma.

The next couple of weeks would come and go with relatively little struggle, but as summer came to an end my biggest challenge approached- going to school. I tried every possible combination of tucking my bag into my pants until I came to the realization that no one cared. Either people didn’t take notice of the bag of stool attached to my body or they too were busy and caught up with their own lives to care about what secret I kept hidden behind my shirt. It was my first time since being diagnosed with UC where I felt “normal” at school. Which was odd because to most this was the least “normal” I had ever been.

No, my journey with my ostomy was not one I would describe as love at first sight. But it has grown on me over time. Yes, I still need my parents help to change my bag every three days, but the once shrieks of pain have now subsided into murmurs. I now go to school every day like a new person. I no longer have fears of finding where the nearest bathroom is or if I am going to be able to take a test for thirty minutes without a wave of urgency coming over me forcing me to drop everything and make a mad dash to the nearest restroom. Instead, most days go by without any thoughts of UC or stomas crossing my mind.

As I come closer every day to my reversal surgery in December, I begin to wonder if I would be able to live with this bag for the rest of my life, and after some thought, I honestly believe I would be able to. UC has taught me over the years that I can overcome anything and the ostomy bag was just the latest thing I had to overcome. If I can go from fainting over a loose tooth to conquering a disease that once bullied me then I can overcome any challenges that may come my way. The once terrifying ostomy bag has become a cherished friend of mine who I will never forget even when it is gone. I cried when I had my first tooth removed. I may also cry when I have my ostomy removed, but I think these tears will fall for a completely different reason.

Colonel Justin Blum with Introduction by retired Navy Veteran Douglas R. Stocks

I’ve known Colonel Justin Blum for almost ten years and have learned much of his story over those years. For UOAA’s observance of Veterans Day, I asked Justin to share his story in greater depth. It is typical for us to remember our Veterans as heroes, but we don’t think or even imagine that they also may have been through a life-altering illness or traumatic event resulting in an ostomy. My wife Joanna (an ostomate) and I had the opportunity to spend an evening with Justin and his wife Leah after the Durham Run for Resilience 5K this past October. I was reminded that evening of the hero that Justin truly is, and felt it was time that others knew the story of this humble and well-respected man.

In 1993, when Justin was a Major on active duty in the US Army, he underwent surgery for an ileostomy due to ulcerative colitis (UC) which had progressed to colon cancer. Justin’s ostomy did not slow him down and he became one of the most respected officers in the state of South Carolina and the only member of the Army Junior Reserve Officer Training Corps (JROTC) cadre with an ostomy.  Justin has had a highly successful career and life of public service. Justin has faced the gamut of living with a chronic illness, to receiving a devastating diagnosis, to ostomy surgery, to survival and finally triumph.

Here is his story:

In the Fall of 1971, I was a freshman at Morris Harvey College in Charleston, West Virginia. I was feeling the stress of being away from home for the first time in my life and of getting adjusted to college life.  I began noticing blood in the toilet after every bowel movement. I told my parents, who took me to a gastroenterologist during my Thanksgiving vacation at home. The gastroenterologist performed a sigmoidoscopy and determined that I had proctitis, an inflammation of the rectum and anus.

I transferred to Rider University in Trenton, NJ, for my second freshman semester to be closer to home, a decision made easier by the fact that Rider had an excellent ROTC program. I suffered with the proctitis and colitis for the next four years with only a prescription for the anti-inflammatory drug Azulfidine to combat the disease. In June of 1975, I underwent my physical exam at Fort Dix, NJ, to go into active duty in the Army. In the course of the physical, the Army doctor performed a rectal exam, and asked, “Do you know what you have?”  I acknowledged that I had colitis. In one of those strange twists of fate, my passion for serving the Army outweighed the colitis so the examining doctor wrote “Fit for Duty”.

For the next twenty years I hid my ulcerative colitis from the Army.  On days that I had attacks, I would explain that I was feeling bad due to having had too much scotch the night before.  Stationed in South Korea in 1976/1977, all too often upon returning to the camp motor pool after patrolling along the DMZ, I would have such severe diarrhea that I could not make it to the latrine and instead would jump into the nearest garbage bin since it was the closest “facility” I could find. I spent the next 13 years seeing civilian gastroenterologists for the colitis and who continued to prescribe Azulfidine. Finally, in 1990, my colitis was so bad I sought help at Eisenhower Army Hospital at Fort Gordan, Georgia where I began seeing Major Armstrong, a gastroenterologist, who informed me that due to my heath condition, resulting from severe flare-ups of UC, he strongly recommended surgery for an ileostomy.  My reaction, not unusual I am sure for people receiving this news, was an immediate, “No! Unless I have one foot in the grave with my back against the wall, I refuse to have this surgery resulting in my living with an ostomy bag!” This was twenty years after my first diagnosis of UC in November 1971. However, just a few years later after a colonoscopy, Major Armstrong told me that I needed ostomy surgery as soon as possible.

On February 28, 1993, I had surgery to remove my entire colon due to UC, which had advanced to colon cancer, and I was left with an ileostomy. As was not uncommon in those days, and even sadly still happens today, I had only one session with the ostomy nurse on how to manage my ostomy.  The day after surgery, I developed a leak in my appliance and called for the nurse, but no one responded.  I looked at myself in the latrine mirror with my ostomy bag hanging down, and I thought I looked like the Elephant Man.  After 10 days I was discharged but did not have access to an ostomy nurse or assistance of any kind except for follow up appointments three hours away at Eisenhower Hospital. I wanted to continue to serve on active duty, so I put my mind toward getting in the best physical condition possible. I started walking 9 miles a day, passed my physical fitness test, and was able to stay on active duty. In 1995 I was promoted to Lieutenant Colonel and in 1996 retired from active duty and transferred to reserve status, continuing to work for the US Army as a high school JROTC Instructor.

Life as an ostomate was fine except that I was experiencing pain from irritation of the skin around my stoma and I did not know of any ostomy nurses in the local hospitals and I didn’t know where to turn for help except for the still fledgling Internet of 1996. I was able to find a Crohn’s/Colitis chatroom on AOL (America Online). In that chatroom I was able to talk with numerous people who had either an ileostomy or a colostomy. On one occasion, an experienced ostomate was able to talk me through the steps to alleviate an intestinal blockage saving me a trip to the emergency room.  I was able to find an ostomy support group at the local hospital, but because they met at 10:00 AM and I was working an hour away, I was unable to attend their meetings. Despite all I learned from online resources I was still plagued with skin irritation around my stoma site which continued for the next 10 plus years.

Life took a turn for the better when in 2010, I received a letter from the nurse who ran the local ostomy support group, which talked about (the now former) Great Comebacks Program; a national honor program started by ostomate and former point kicker for the San Diego Chargers, Rolf Benirschke. This program recognized people who had lived an exemplary and inspiring life while living with an ostomy.  In 2011 I was the recipient of the Tony Snow Public Service Award, a subgroup of the Great Comebacks Program which emphasizes those in uniform living with an ostomy.

However, it was not the award that changed things for me, it was my ongoing communication with the ostomy nurses that I met through this program who eventually solved the problem of the skin irritation and pain that I had struggled with for so many years.

I have accomplished more in my life as an ostomate as a result of the care I have been able to obtain since my story was brought to the national level. If not for my quality of life-improving dramatically as a result of this assistance, these accomplishments would not have become a reality.  I owe so much to three WOC nurses: Donna Sellers, Joanna Burgess, and Joy Hooper. I met them through the Great Comebacks program, and they have always offered their help readily.  I have now been free from pain for the past nine years.

There are many who do not have the same easy access to professionals that I have had. I am very fortunate! That is why I believe everyone should seek out or become involved with a community of ostomates either through an online support group or hospital-based support group if possible. All ostomates should help other ostomates achieve the quality of life made possible by their life-saving surgery. Having UC and then colon cancer at age 40 meant years of pain and discomfort in my life. Ostomy surgery gave me a new life. Before I retired from teaching, I used my experience with my ostomy to motivate my JROTC cadets, inspiring them to never give up on anything and reminding them they can accomplish anything they set their mind to.  I no longer see myself as the Elephant Man, but as a man with a beautiful wife, supportive children and two amazing grandchildren.  Life is good!

The UOAA thanks you for your service Colonel Justin Blum and honors your accomplishments!

  • 1995 – Promoted to Lieutenant Colonel
  • 1996 – Retired from active duty; continued to work for the US Army as an Army JROTC instructor in the United States Army Cadet Command.
  • 2003-Named the United States Army JROTC Senior Instructor of the year
  • 2009 – Promoted to Colonel, in the South Carolina State Guard
  • 2010- Named Volunteer of the Year for the State of South Carolina
  • 2011- Named US Army JROTC Senior Instructor of the Year for the second time.
  • 2011 – Named the Tony Snow recipient for Public Service
  • 2019 – Lawson R. McElroy Award for Engaged Learning

 

My View: By Connie Confer

Most of the nation is gearing up for Halloween, with all of its tricks and treats. But as a lesbian who wears an ostomy bag, this month also includes some more personal holidays worth celebrating, especially if we want people to feel more accepted and safe.

Did you know that Oct. 5 was Ostomy Awareness Day? Just like the more established National Coming Out Day (Oct. 11), it brings an opportunity for people to celebrate their differences and their courage as they announce, perhaps with some trepidation, that they live with certain realities. They hope their family and friends will not shy away. They hope their bosses will not fire them.

That fear is completely rational. Just this week the U.S. Supreme Court heard oral arguments in cases that could indeed decide whether someone can be fired for being gay or transgender. We will have to wait for months to hear their decision and how it will impact our laws. But in the meantime, I want to advocate for acceptance, not alienation. I want to argue that open communication creates community and reduces stigma for people in my own life circumstances.

Yes, it is tricky to navigate the reactions of the world, and it takes some courage. But the treat continues to be that we are not alone. The LGBTQ community is indeed a family, with gay pride parades in every major city, and support groups for people who want to come out to their friends or family, or for parents and other family members who want to support a gay or transgender young person navigate in an unfamiliar world.

Connie Confer, left, at the California General Assembly where she has been key to getting proclamations to recognize Ostomy Awareness Day.

Similarly, my local Southern California, Inland Empire Ostomy Association, offers support and practical advice for people who find themselves facing surgery for an ostomy pouch. As do over 300 other United Ostomy Associations of America (UOAA) affiliated support and Information groups nationwide.

No wonder people worry when they hear they will be among the 100,000 people in the United States who will get an ostomy this year. The treatment for diseases such as cancer or Crohn’s almost sounds worse than the disease. People wear a pouch attached to the abdomen that holds urine or feces that must be emptied and changed regularly. It can be embarrassing to talk about it, but just the same, we must.

That surgery is life-saving. I am living proof. And the routine of wearing the pouch seems quite easy and normal to me now. I find that I can talk about it with people close to me, and that I do not feel any stigma. For others who want to get to a place where an ostomy pouch feels routine, you should consider attending a UOAA affiliated support group near you.

There is no reason to suffer in silence and there is every reason to be fully and proudly yourself, no matter what your reality. And if you are not impacted by these specific things, make sure you are supportive to friends and family who are.

Life lived honestly can be a real treat.

Carolyn “Connie” Confer served as the assistant city attorney for Riverside, California and has advocated for the LGBTQ community for decades. She was there in September when Assemblyman Jose Medina declared Oct. 5 as Ostomy Awareness Day in California in honor of the work of the Inland Empire Ostomy Association.

“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.

My Colostomy Saved My Life

Without a colostomy, I would likely not be here to write this blog. It saved my life. I am a quadriplegic as a result of a spinal cord injury (SCI) that occurred when I was 16. That was 36 years ago. I am paralyzed from the neck down and SCI impacts the operation of the bowels. In simple terms, to move your bowels you have to use some type of stimulation because the regular nervous system is unable to work on its own.

For many years, I successfully used suppositories for my bowel routine. When they stopped working, I switched to a different type of suppository and began to use numerous stool softeners. Approximately three years ago, my system began to limp along. I couldn’t fully evacuate my bowels and I was losing my appetite.

And then one day my bowels stopped working. At that point I was using multiple enemas without success. I went to the hospital. Unfortunately, I had a history of bowel obstruction surgeries, so no doctor was willing to do a colostomy because of the risk of perforation of my bowels. As an attorney with the Federal government, I was unable to keep up with my job and had to retire on disability. I was bloated as if I was expecting triplets and felt horrible and weak. My quality of life was significantly impacted and my husband was cooking as much soup as he could, and that didn’t even help when it came to my appetite and nutrition. I tried acupuncture, stomach massage, herbal tea, you name it. I was depressed, exhausted, and scared.

My gastroenterologist suggested that I go to Mayo Clinic as a last resort. I traveled from Virginia to Minnesota with low expectations, hoping that the medical team could even just figure out something to help me go to the bathroom.

To my great surprise, Mayo Clinic agreed to do the colostomy. The surgery took place in late June, 2018, and since then I have regained my quality of life and feel like a new person. I have never been healthier. I have energy for work (my husband and I started a business, Happy on Wheels, LLC), social life, and exercise.

Many factors contributed to getting it right. First, colostomy nurses are my heroes. They marked the site for the surgery, fitted me with appliances to start off with, and explained how to apply everything. They trained my attendant on how to attach the flange and we examined the different types of pouches. I left with an initial supply, but they were very clear that it would be trial and error.

The ostomy nurses were spot on about flexibility. Every person is different and trying out different appliances is a necessity. There have been accidents and leaks and I have made adjustments. I have high output and cannot change my bag independently, so I devised a way to use an irrigation bag as a regular colostomy bag during the day, and I use a smaller pouch at night when I’m in bed. Additionally, figuring out the amount of supplies needed is unknown in the beginning. For the first couple of months we were frantically running around because I would run out of flanges and pouches. After about three months, I knew what I needed was able to establish a consistent ordering system.

My advice to anyone considering a colostomy is that the surgery is not the hard part. It is the period afterward when flexibility is needed. It is a learning process and each person is different. No pun intended, but there is no one size fits all.

Don’t get frustrated if your particular appliance doesn’t work. The companies that sell supplies, such as Hollister, Coloplast and Convatec, have very helpful representatives and are willing to send free supplies to try. I encourage new ostomates to also reach out to others who can provide tips on what has and has not worked for them. I have a good friend with a colostomy and her advice has been very helpful. The bottom line is that if you are open-minded and don’t get frustrated, within six months you should have things settled and develop a routine.

Getting a colostomy was a miracle for me. I intend to advise all quadriplegics that after a certain number of years they should talk to their doctor about proactively getting a colostomy before their bowels stop working. I am a happy bag lady!

“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization