Keep pushing forward – Ostomy Awareness Day 2020

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It can be hard to talk openly about living with an ostomy, but at Coloplast, our mission guides us in our everyday work and our employees embody a passion around hearing real-life stories from people with intimate healthcare needs. We have gotten to know Joel through his story, his resilience to keep fighting, and we are proud to stand with the ostomy community in raising awareness of ALL people living with an ostomy.

Join us, Joel and ostomates across the nation in participating in the Virtual Run for Resilience for the 10th Anniversary of Ostomy Awareness Day (OAD) on Saturday, October 03, 2020.

Joel’s Story

I was diagnosed with Crohn’s disease at 17 years old. Nine years later I had a very bad flare up that put me in the hospital fighting for my life. When the doctors first told me that the best option was to have ileostomy surgery, I was so upset but I was in so much pain I was hoping that it would make me feel better. When I finally woke up from surgery and realized I had an ileostomy – I cried. I didn’t even want to look at it. It took some time, but I got used to it, my stoma saved my life.

After surgery, the scariest thing for me was not knowing how I was going to move forward in life with an ileostomy. As soon as I got out the hospital, I began to work out every day, even if it was for 25-30 minutes. In 6 months, I was able to build my strength up enough to complete and graduate an intense 4-month police academy. Today, I continue to do what I love and recently completed my personal training certificate.

I am telling my story to tell you that you should never give up on something – even if it seems impossible. Stay strong, stay positive and keep pushing forward!

I am excited to walk, run with you all on Ostomy Awareness Day for the Run for Resilience and hope you will join in with me! I created this video, “Tips on Running with an Ostomy” for you all. I am always looking to connect, and support others so feel free to reach out to me if you need help, want to chat, or just need some support. You can find me on Instagram at @crohnically.fit

Join us for the Run for Resilience

Having an ostomy should not hold you back from participating in the run/walk. Our Coloplast® Care team is here to support you if you want to chat, just give us a call at 1-877-858-2656. We also have resources on our website on sports and exercise.

Coloplast is proud to be a part of the effort to build awareness that ostomies are lifesavers, visit our website to request a free sticker for OAD and join our contest for an opportunity to win some swag! We can’t wait to run/walk with you on October 03! Make sure to follow us on Instagram @coloplast.us for updates leading up to the event!

 

*Joel is a Coloplast product 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

 

Top 10 Ways to Raise Ostomy Awareness

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A Decade of Shining a Positive Light on Lifesaving Ostomy Surgery

By Jeanine Gleba, UOAA Advocacy Manager

“Ostomates Unite and Help Place The Ostomy In A Positive Light! Celebrate UOAA’s Ostomy Awareness Day!”  These were the words that were spread when UOAA announced the first National Ostomy Awareness Day on July 25, 2010. A decade later, UOAA continues to sponsor and celebrate this day annually in the United States by raising awareness about this life-saving surgery and increasing national visibility of those living with ostomies. Starting in 2014, and all subsequent years, UOAA has been celebrating Ostomy Awareness Day on the first Saturday of October, which coincides with World Ostomy Day every three years. This year National Ostomy Awareness Day will be held on Saturday, October 3, 2020. 

The idea for an awareness day was originally suggested by Ally Bain, who worked with UOAA as a summer intern in 2010. (Flash forward, this is the same Ally instrumental for the Restroom Access Act (aka Ally’s Law).  The awareness day began as an experiment in social media to see what kind of grassroots support they could get for ostomy recognition. UOAA sent out a request on social media asking all followers to show their allegiance to the cause by changing their online status to the slogan above and make their profile picture UOAAs logo.  The immediate response was so strong that they were also contacted by friends at Talkin’ Bout Guts, to host a 24-hour live podcast in honor of ostomy awareness. Thousands participated that year.

In recent years, UOAA has also named an Ostomy Awareness Day Champion. This year’s champion is Robin Brown, pageant winner Mrs. Washington, who uses her stage platform to raise awareness for ostomy surgery “all in the hopes that it can be a light for someone stumbling in the darkness”.  Her ostomy story and journey from farm girl to the title of Mrs. Washington World America is inspiring. Watch her special video message for Ostomy Awareness Day!

Over the years, celebrations have been centered around several different themes including Bouncing Back into Life, Navigate the Journey Together, Speaking Out Changes Lives and, most recently, Ostomies Are Life-Savers.

To commemorate the 10th anniversary, here are 10 ways you can join the movement to raise ostomy awareness this year:

  1. Help shine a positive light on ostomy surgery and go “live” on your own at 7:00PM EDT on October 3rd with people all across the United States. Hit the “live” button on your personal social media accounts (Facebook, Instagram or TikTok) to shine a light on yourself and tell everyone how your ostomy saved your life or that of a loved one. If you are a medical professional, share how your work helps save lives. 
  2. Participate in our 7th annual Run for Resilience Ostomy 5k. This year our local Ostomy 5k events will be held virtually along with our annual worldwide virtual Run/Walk, so you can walk or run in your favorite place or at home. Visit www.ostomy5k.org to register or donate for one of these events. You can also join UOAA’s “United Advocates Smashing Stigma” team too!
  3. Create a fundraising team through one of our Ostomy 5k events and challenge your family, friends, Affiliated Support Group members, colleagues and coworkers to raise ostomy awareness and funds for a good cause! Have your teammates share the team campaign and see who can get the most donations. Better yet, ask your employer to match any donations raised! 
  4. Make a donation to the “Ostomy Awareness Fund” as a tribute to the 10th anniversary. Donate a minimum of $30 and receive a special bandana with the “Ostomies Are Life-Savers” graphic image.   These bandanas are also a great pet accessory.  Share a photo with UOAA of your pet raising ostomy awareness!
  5. Participate in some of the events we have planned with partners such as the Facebook Live Event that will be co-hosted with Crohn’s and Colitis Foundation on October 3rd. 
  6. Raise awareness and spread the message that ostomies are life-savers using our infographic. We encourage you to share, post or print it wherever possible. 
  7. Our Operation Ostomy – A Life Saver campaign continues to spread the message that we are saving lives one ostomy at a time. Please use our 10th Anniversary Ostomy Awareness Day logo for your profile picture on your social media accounts. Use the hashtags:  #OstomiesAreLifesavers #OstomyDay2020 and tag UOAA on Facebook @uoaainc  Instagram @uoaa_ or Twitter @uoaa. 
  8. Get your Federal, State or Local elected officials to pass a proclamation declaring October 3, 2020 as the 10th anniversary of this special day. Use our sample proclamation or take action here.
  9. Use our sample letter to the editor to share with your local media why ostomies are life-savers.
  10. Aside from Ostomy Awareness Day, October is full of fun fall activities. Carve a pumpkin (or paint) in an ostomy theme. “Shine a light” in your carved pumpkin and raise ostomy awareness in your neighborhood.

For more information and the latest ways to get involved including activities from some of our sponsors visit https://www.ostomy.org/ostomy-awareness-day/.

With your help we will carry on breaking the silence and shining a positive light on what has saved so many lives.

Get Moving for Ostomy Awareness

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The Annual Run for Resilience Ostomy 5k is Coming to You!

 

It’s a good year to celebrate your life. To get outside in the fresh air and get moving again if you can. To speak out and make noise that “Ostomies Are Life-Savers” and not something to be stigmatized or feared.

To keep everyone safe and adhere to any local COVID-19 guidelines all Run for Resilience Ostomy 5k events are being held virtually this year. That just means you can run, walk or roll wherever you want (even inside on a treadmill) and still be a part of Ostomy Awareness Day activities on Saturday, October 3, 2020.

We’ll be celebrating an ostomy community that has shown resilience long before “resilience” became the buzz word of the year. With your registration for the Worldwide Virtual Ostomy 5k, we’ll mail you a race bib, unique 10th Anniversary Ostomy Awareness Day Race T-Shirt and special stickers and sponsor giveaways. If you want to show your state pride and live in Alabama, Arizona, North Carolina, Idaho, Michigan, Pennsylvania, Oregon/Washington please consider supporting your local “Virtual 5k event.” You may have the additional opportunity to pick-up a race bag along with the t-shirt and giveaways at a safe location organized by the local race directors. (MI Run participants T-Shirts, race bags and materials will be mailed.)

You don’t have to be a runner or walker to support these charity events. This event has traditionally been a critical fundraiser for UOAA and the advocacy, resources, and educational materials provided for anyone in need of ostomy or continent diversion surgery. The canceling of in-person events will be a fundraising challenge we’ll need help to overcome. 

Please consider donating or starting a fundraiser like Catherine Salisbury Catherine shared her inspiring story on the fundraising page she created on the Virtual Run Sign-Up website.  

I was diagnosed with a hereditary colon cancer disease, Familial Adenomatous Polyposis (FAP), in 2015. This diagnosis both saved and drastically changed my life. In 2016 I had a total proctocolectomy surgery with a temporary ostomy for three and a half months.  In 2019, desmoid tumors were constricting the blood flow to my j-pouch so I had to have it removed and had a permanent end-loop ileostomy created.  It has been an incredibly difficult journey, but I am beyond blessed with an amazing support system. My family and friends have kept me going through this whole crazy journey. I am beyond grateful for them.

I hope to raise money to help other ostomates who do not have the same incredible support team I have. -Catherine Salisbury

You may be surprised by how supportive others will be if you share your story and create a fundraiser. Catherine increased her fundraising goal to $1,000 after the response from her supportive friends and family helped her reach her original goal.

We also have incentive gifts featuring the “Ostomies Are Life-Savers” logo for those who reach goals of $250 and $400 and anyone who donates or raises $30 or more will receive a special bandana for themselves or their pet.

Starting a Group/Team is also a great way to connect with friends and family wherever they live so they can show support for your journey.  Groups of WOC nurses can claim bragging rights for regional participation (the team WOC This Way in Indiana is leading) and co-workers may have fun in challenging other departments. New this year we are excited that supporters of WOCN Society’s Fund the Future program are coming together for the We All Walk Together Team.

UOAA Affiliated Support Groups such as the one in DuPage County, Illinois looks forward to gathering members for a virtual event every year and are forging ahead with a team and fundraiser even as they anticipate COVID restrictions will not enable them to all meet up together at their usual park location. The year’s Exclusive Diamond Sponsor of the Ostomy 5k, Hollister Incorporated, is also planning another employee-wide event and we expect to hear about other sponsor events soon.

Ostomy Support Group of DuPage County at their Virtual Ostomy 5k in 2018, the group will be back this year with social distancing guidelines in mind.

For some extra motivation consider starting a couch to 5k training group with some friends to get ready and feel great in October. 

Wherever you choose to run or walk be sure to let others know about it to truly raise ostomy awareness. Take pictures of yourself doing your virtual race and email them to us or share/tag them with our public Facebook page. Hashtag your photos or stories #RunforResilience and we may repost on Twitter or Instagram.

We are very grateful for our national sponsors who help offset the costs of the events and believe in this mission. They have stepped up during this difficult year and remain committed to this event and the cause of ostomy awareness. 

Rally your friends, co-workers, and family to the cause of ostomy awareness. People are still choosing death over life with an ostomy and it’s up to you to help show the world what people living with an ostomy are really capable of.  

 

Register for a virtual event near you or for the worldwide Virtual 5k. Sign-up before 9/11/20 and save up to $5. The special price of $17.50 includes a special 10th anniversary of Ostomy Awareness Day technical t-shirt (Michigan is $22.50 shipping included). Worldwide Virtual Event Registration is recommended for those not near one of our local virtual events t-shirt packet pick-up locations.

Click Here to Register

Click Here to Donate or Start a Fundraiser

Robin Brown’s Story

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Living with an Ostomy and IBD led her to become an Unexpected Beauty Queen and Advocate

 

Hi Everyone! My name is Robin Brown, I’m a 40-year-old wife, momma & farm girl. I also happen to have an ostomy and the title of Mrs. Washington World America!

My relationship with my guts has been a long battle….even as a child I suffered from severe ulcerative colitis symptoms but I wasn’t officially diagnosed until I had my first bowel resection at age 21 as result from an infection following an appendectomy. I lost my marriage and some guts but I finally got some answers…or so I thought. The next ten years were a rollercoaster of medications, treatments, alternative therapy and surgeries(15 to be exact.)

I was miserable. My family was miserable. But, I’d had enough and didn’t want any more treatments. Soon I was back in the hospital and one doctor reviewed ALL my info and said he knew exactly how to fix me…OK, just one more surgery then. Well, he was right…he fixed me!! I was no longer having incontinence issues, I could eat again (personalized diet plan) and was feeling great compared to the previous ten years. End of story right?!

WRONG! Less than a year after surgery I was in an accident where I was crushed between our off-road truck and the back wall of our garage. It was a literal and figurative blow that nearly took my life. I had holes in my large intestine, holes in my small intestine, a shattered pelvis, four broken bones in my back and an aortic aneurysm. I had to undergo countless operations, hours of physical therapy and I was even put into a coma while doctors worked fixing one piece at a time.

After everything began to heal I realized how broken I was. After the accident, I lost myself. I had worked as a medical assistant for years and loved working in healthcare. Now that was gone. I was finally a mother after trying for nearly ten years. Now I couldn’t even lift my two-year-old son for a hug. I took great pride in being a partner to my husband. Now I needed him to help me sit on the toilet. I was stressed and depressed. My UC symptoms worsened by the day and now that I had shortened guts it caused a multitude of other problems like rectal prolapse (twice!) which led me to finally agree to get my colostomy pouch. I cried, a lot.

Being home, then in and out of the hospital, and no longer able to have a 9-5 job I decided to start a little online business selling skincare and cosmetics. Not really to make money but just to feel like I was doing SOMETHING! I had to get out of this funk. I was hiding. Hiding from my husband, even though he had an easier time accepting things than I did. Hiding from my reflection- because every time I saw myself I felt depressed and sad. I was hiding from the world by wearing bulky sweatshirts in the middle of summer so no one would see my bag. Then one day in my online makeup group I shared a bit of my story. The response was amazing and beautiful and that’s when things began to shift. One afternoon I received a message from an old friend suggesting I compete in a Mrs. Beauty pageant since the focus is so much on what you do to inspire rather than just what you look like. Me? In a pageant? Probably not. Then a few weeks later the same suggestion from another. Ok universe…I hear you. I decided to apply for the Mrs. Washington America pageant and was quickly named Mrs. Mason County.

Great! What in the heck did I sign up for? Before surgery, I swore off swimsuits and anything tightly fitted. Now, not only will I wear a swimsuit on stage but I’m going to ask to be JUDGED?!?! What on earth was I thinking? Now, in addition to volunteering and fundraising, each queen must have a platform. Something they want to bring awareness to and are passionate about. The obvious choice for me was gastrointestinal disease and ostomy awareness and education, but that’s not the most beautiful platform and can make people uncomfortable. As quickly as the idea came, fear and doubt began to creep in and I promptly began thinking of other ideas.

At my first pageant event, a holiday party to meet all the other queens, we were introduced to a designer that would be custom designing an opening number dress for each of us! As I chatted with the designer I quietly mentioned I had a colostomy bag and could we design something to hide it as much as possible because I wanted to feel beautiful. A short while later I bumped into a sister queen at the elevators. She introduced herself and wanted to know if she could ask a personal question…of course, I said! She asked if she overheard my conversation correctly that I had a colostomy bag? Yes, yes I do! “Really?!? Where, I don’t see it?” She continued, “are you happy you made that choice? What’s the hardest part? Does it hurt?” A million questions rolled off her tongue at once and then she shared her struggles with GI disease and the fact that an ostomy has come up in her doctor’s appointments and she was terrified and thought life would be over¬– until she met me! I knew right then, I had the right platform and that by sharing my story I could help others in ways I never dreamed.

At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.

In the months leading up to the pageant, I began volunteering at hospitals and schools, sharing about differences and acceptance. I had the opportunity to be a speaker with a major medical company to share my ostomy journey and provide input to how they can better serve our community. I even went live on Facebook and showed my bag to the world!

In a few short months, I became empowered and proud of my body and my spirit again. I walked the stage in a swimsuit like I was a supermodel, rocked a gorgeous FITTED gown with grace, and with a smile heard myself say the word bowels, as it proudly rang through the pageant auditorium.

Guess what? I didn’t win. I did not even place in the top 10. I went to the coronation party with a stage smile and promptly excused myself with my best friend by my side. She knew I needed to cry. As we reached the bottom of the grand staircase I could feel the tears of disappointment welling, and her hand grasping tighter to my arm letting me know I just had to keep it together for a few more seconds. At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.

Soon after, I applied to represent Washington at the Ms. World International pageant after a few weeks and committee meetings later, I was selected! I am now Mrs. Washington World America and I couldn’t be more proud to represent my state and the ostomy community at the upcoming pageant.

I never thought I’d have an ostomy. I never dreamed this farm girl would be a beauty queen. I never imagined my trials would become my triumph and my story of hope. Throughout my life, many have attempted comfort me with the words “everything happens for a reason.” This honestly just kept me waiting for a moment of clarity and answers but that moment never came. I found no reason! I think sometimes bad things just happen and it’s up to us to give them meaning and purpose. For me this is it. Sharing my story, my triumphs, my tragedies. All in the hope that it can be a light for someone stumbling in the darkness.

 

Robin Brown will be this year’s Ostomy Awareness Day Champion for UOAA. Check out all the ways to get involved and join with her on Saturday, October 3, 2020.  

Justin Mirigliani’s Story

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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!”

 

 

Hollywood’s First Ostomy

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Subject of the movie White Boy Rick reveals why depicting his ostomy was critical to the story.

 

By R.S. Elvey

Hollywood movies, both fictional and nonfictional, thrive on melodramas depicting romance and violence. Car crashes, explosions, shootings, and all kinds of mayhem deliver gruesome injuries to victims and survivors. The 2018 film White Boy Rick, starring Matthew McConaughey and Richie Merritt, has all these components but is unique in showing the personal aftermath of a violent act – in this case scenes depicting an ostomy.

The film, set in the 1980s on Detroit’s eastside, tells the true story of Rick Wershe, Jr., called by the local newspapers “White Boy Rick” and his father Richard Wershe, Sr. During that decade, Ronald Reagan’s War on Drugs is in full swing and the FBI is anxious to break up drug dealing and crooked police in Detroit. Agents observe 14-year-old Rick mingling with a local drug lord and his father selling illegal guns to drug gangs. They meet with Rick and his father and offer them a deal. To prevent his father from going to jail, Rick, at 14, would become an informant working for the FBI. His father agrees to the deal and Rick becomes the youngest informant ever undercover for the FBI.

While working for the FBI, Rick becomes more and more involved in the daily activities of a leading Detroit drug lord and his gang. They become suspicious of Rick and he is shot in the stomach by a .357 magnum. The bullet enters and goes clean through, severely damaging his large intestine. He is rushed to Ascension St. John’s Hospital, Detroit, where lead surgeon Dr. Norman Bolz and others save his life. He awakes with a lifesaving ostomy.

The first time the ostomy pouch appears in the film is when Rick and his father are coming home from the hospital. Rick has his left hand over his stomach and the pouch is overlapping his pants. He is also depicted emptying his pouch. In a recent correspondence with Rick from prison he said, “When I woke up, I didn’t realize that I had it. I think I touched my stomach and then first felt the bag. I didn’t know what the bag was. Dr. Bolz came in and explained to me what the bag was and how it worked. The bullet had torn through my intestines and the doctors were hoping the intestines would heal and that it could be reversed, but that it would take a while.”

The real White Boy Rick young and old.

Rick Wershe, Jr. “White Boy Rick” when he was convicted in the 1980’s and today behind bars over 30 years later.
Top photo credit: Sony Pictures

 

While in the hospital the staff showed him how to empty and change his pouch. At home he was never seen by an ostomy nurse or received any other ostomy maintenance training. He said, “I basically had to learn on my own. Fortunately, I really didn’t have any skin problems. I had to keep the bag clean and was able to do a pretty good job. I had skin irritations but it was not too bad. I was lucky.” His friends were young and they were shocked when they saw his bag. But he said, “My family, especially my dad and grandparents, tried to be as helpful and supportive as they could.” He also met others who had ostomies. Rick had to pay for his own supplies at a local pharmacy which proved very expensive. His father wanted him to wash and reuse the pouches but Rick wouldn’t do that. He would use 2-3 new pouches a day.

Andy Weiss, one of the movie’s screenwriters, spoke numerous times with Rick while working on the screenplay. When asked why the ostomy scenes were included he said, “The ostomy scenes are the core of showing Rick’s vulnerability and what I was hoping to get from it was the sympathy and empathy that he deserved but never received from law enforcement or the people around him at that time.” Rick insisted that his ostomy should be part of the movie saying, “We included the ostomy scenes because I thought it was important to show young kids and adults that you can go through this and still be ok.” And get through it he did. Rick says that the ostomy proved to be no hindrance either socially or in his daily dealings. A year and a half after his original surgery, Dr. Bolz performed a successful revision.

Rick soon faced even greater challenges. Abandoned by the FBI and his family needing money, Rick and his father turned to the only way they knew how to make money, dealing drugs. Eventually, Rick was arrested and sentenced to 30 years for drug dealing. Now 49-years-old, he is scheduled to be paroled in 2020.

When ostomates watch the movie, the ostomy is immediately recognizable. But numerous reviewers of the movie never mention the ostomy scene. Ostomate, Robin Glover on ostomyconnection.com, wrote after viewing the film, “There were some inaccuracies, but it will definitely raise awareness and change what the word “ostomy” conjures up in the mind of anyone that sees it.” Joy Hooper, United Ostomy Associations of America’s 2019 WOCN of the Year was enthusiastic in her response to the film and said of the screenwriter, “I appreciate his way of displaying life with an ostomy. He did a superb job. He was able to show what many consider a negative aspect of life respectfully.”

White Boy Rick is now available on streaming services.

October is a Good Month to Unmask Your True Self

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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.

Ostomy Awareness Day 2019 Highlights

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“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.

Sheri Denkensohn’s Story

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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!

Ostomy Awareness Day: Ostomies are Life-Savers

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“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