Tag Archive for: colostomy bag

Swimming with an Ostomy

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Having an ostomy should not prevent you from swimming. Below are some helpful tips to get you feeling confident in the water, whether it’s in your own backyard pool or at a beach.

  • You can swim or be in the water while wearing your pouching system. Remember, your pouching system is water-resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma.
  • Prior to swimming, make sure your seal is secure.
  • Empty your pouch before swimming. Also, ensure your wafer has been on for at least an hour prior to getting wet. If you are nervous about output, eat a few hours before jumping in.
  • If you use a filtered pouch, use a filter cover sticker on your deodorizing filter to prevent water from entering the pouch. You can remove the cover once you are dry.
  • Wear what makes you feel the most comfortable. Swimming with an ostomy should be fun and worry-free regardless of what you’re wearing. Shop with confidence knowing there are so many options that could work for you.
  • Always carry extra supplies in case you are somewhere where supplies may not be available.
  • For extra peace of mind, use barrier strips if you will be swimming for an extended time.

me+ Team Member Tip: “I tell people who are scared to swim with an ostomy to spend a few hours in the tub on a lazy day. If your pouching system holds up to that, then the pool should be a breeze.” ~Sarah B.

Editor’s note: This article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

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.  

Lacee Harper’s Story

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Imagine being your 15-year-old self again. What did that feel like? Young, carefree, happy…healthy?
For me, I felt all of those things every day. I played the clarinet, got good grades, was athletic from running track, active in school/church clubs and had amazing family/friends. What more could I want as a teenager?

I didn’t want for anything until one day I no longer felt like my healthy self anymore and all I wanted was to be healthy again. This is when my life changed forever…

It was November of 2012, at the time I had just moved to Los Angeles, California with my mother from Maryland. I was very excited to move and support my mom with her new job opportunity. She is like my best friend and nurturer at the same time. It was always just her and I growing up, no siblings. California’s scenery was colorful and vibrant. All I could picture were the great things my future would bring living there.

That picture flipped upside down within weeks. I could feel my stomach expressing to me that it didn’t like the chicken nuggets or the pepperoni pizza, I was feeding it. Sharp pains that felt like knives were sticking me each time I would eat, pushed me to never want to pick up another piece of food again. No over-the-counter medicine could relieve the amount of pain I would feel. Sick little me sat helplessly with my mother by my side in Ronald Regan UCLA Medical Center’s emergency room waiting to be admitted and seen by a doctor. I thought to myself, “What was happening to me? I don’t understand.”

I couldn’t understand. I was just fine a month ago. My mom was just as confused as I was. The doctors weren’t transparent enough with my diagnosis and had trouble figuring out what was the actual problem. After a few tests, I was diagnosed with ulcerative colitis/Crohn’s disease. This diagnosis soon changed once the gastrointestinal team at UCLA Medical Center (UCLAMC) realized it was strictly my colon that was being affected which changed my diagnosis to ulcerative colitis.

I had no idea what ulcerative colitis was nor had I ever heard of it before. My current gastroenterologist, Dr. Ziring, asked who in my family had the disease but I wasn’t familiar with anyone. My father, mother, and grandparents didn’t have any trace of ulcerative colitis. It was concluded that the change in climate and stress could have taken a toll on my body to make me flare-up. I couldn’t eat certain foods anymore. I was prescribed all types of medication that I had never seen and forced to take pills that were pretty huge to swallow.

Lacee Harper with her mother.

Nearly one month spent in the hospital, my routine had changed. I would wake up take my meds first, eat (liquid-solid foods), watch TV, read a book, walk around to gain my strength and repeat at least three times a day. Once I was released, I remember being so happy to be a normal person again. That feeling went away when my mom took me to buy nutritional drinks to restore my protein, vitamins, and minerals. I couldn’t fit into any of my clothes from the amount of weight I lost and my toned body went away. Dr. Ziring told me that I would live with this forever because there is no cure, which I didn’t want to believe. All I could do was try to understand and educate why my body reacted the way it did to certain foods, activities and mental stability.

Fast forward to 2013 where I moved back to Maryland with my mother, I was enrolled back in my previous high school and actively seeing, pediatric gastroenterologist, Dr. Oliva-Hemker at John Hopkin’s hospital. I couldn’t do any of the previous extracurricular activities I participated in and could only workout at a minimal intensity due to my low blood counts. Throughout the school year, I experienced many flare-ups and trial/error with different medications. Some hospitalizations were longer than others and overtime I became stricter with my diet to prevent excessive flare-ups. My high school graduation wasn’t the best time for me because I was experiencing a severe flare-up that interfered with my ability to keep food down. I missed my senior week summer trip to recover in the hospital and get back to feeling better again.

After graduating from high school, I switched gastroenterologists since I was considered an adult. Dr. Rosen had been my mom’s gastroenterologist for years so the transition was smooth. I was stabilized on Humira and Prednisone throughout my community college career. By then, my mother and I had moved to Atlanta where the weather was nicer. I think the weather, being around family/friends and less stress I experienced helped my flare-ups calm down living in Atlanta. I truly enjoyed my time there and experiencing college at Georgia State University, as well as working part-time.

Lacee recently graduated with a master’s degree from the S.I. Newhouse School of Communications at Syracuse University.

Once I completed my first two years of college and received my associate’s degree, I transferred to Syracuse University (SU) to achieve my bachelor’s degree. This was one of the hardest transitions of my life moving from the South to the cold North. My third year of college and first-year being away at a university led to my body experiencing an extreme transition which resulted in three severe flare-ups. My mother left Atlanta and moved back to Maryland to be closer to me because she was terrified of how sick I was getting. Each time I flared up, I flew home to get the treatment from Dr. Rosen. Suddenly, Humira no longer worked for my body anymore and Prednisone wasn’t healthy for me to keep using to reduce inflammation due to its side effects.

During senior year, my 3-week hospitalization interfered with my academics and involvement in extracurricular activities. At this time, I was advised to try Entyvio and I was tired of trying new medications. The only way I could have some quality of life was to remove my colon. My mom was concerned for me, but I couldn’t let her concerns steer my thinking I knew I had to do this for me if I wanted to make it to graduation.

In November of 2017, I set an appointment with Dr. Colvin in Northern Virginia to discuss my surgery. I had the surgery during my college winter break, spent Christmas in the hospital, recovered and returned back to school. At the time, I didn’t know how I was going to apply to graduate school at the S.I. Newhouse School of Communications at SU but I did that during my recovery period. It took a lot of exercise, mental motivation, empathy and support from family, my best friends, mentors and peers at school. With amazing grace and good spirits, I got accepted into the public relations program at the S.I. Newhouse School of Communications.

From this specific point on, learning how to function in everyday life with my ostomy took a lot of patience, time, emotional breakdowns, motivation and positive mental strength. I don’t regret any of it at all. I do not have to worry about missing out or not fully enjoying any more important events of my life. Now as of 2020, I have been medication-free for two full years, graduated school with all of my degrees, feel healthier than ever, working full-time in public relations and am actively pursuing my dreams in the entertainment (modeling/tv/film) industry.

It wasn’t until a couple of months ago, I discovered United Ostomy Association of America (UOAA) and chose to reach out to Advocacy Manager Jeanine Gleba about getting more involved. Since reaching out, I have gained the opportunity to advocate for patient’s access to treatment during the Digestive Disease National Coalition Day on the Hill and spoke on the behalf of UOAA. I am elated to have met UOAA’s team and to represent others like myself who have experienced challenging obstacles.

I couldn’t be more grateful for my ostomy and must say that it changed my life for the good. Life is full of obstacles but how you choose to overcome them will make your life. I chose to take full control of my life in order to have a better quality of life. It doesn’t matter who you are, you can truly do whatever you put your mind to. Believing in yourself and staying grounded in positivity, motivation and dedication is key. Follow your dreams, find what makes you happy and don’t let the negatives take control of your life.

Ostomy Myths vs Reality

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Let’s Debunk These Common Ostomy Myths

 

 

 

After ostomy surgery, you may find helpful tips from other people living with an ostomy in online communities, support groups, forums and more. Weeding through the fact and fiction can be difficult. We asked certified ostomy nurses to outline some of the most common myths they hear to provide you with the truth about living with an ostomy.

 

Myth: Only use the ostomy pouching system that you were fitted with in the hospital or doctor’s office.

Fact: In the weeks and months following ostomy surgery, you may find your stoma and body changing. In the first few weeks and months post-surgery, your ostomy pouching system may need to be changed also.

 

Myth: All ostomy products are the same. It doesn’t matter what type of pouching system you wear.

Fact: There are a large variety of ostomy products available to fit the needs of each person living with an ostomy.

 

Myth: Your stoma should not change size a few months after surgery.

Fact: In the weeks and months following ostomy surgery, your stoma may change in size and appearance.

 

Myth: Having skin irritation is a normal way of life with an ostomy.

Fact: If the skin around your stoma becomes damaged, it could be painful and lead to infection. Prevention is the key to maintaining both healthy peristomal skin and your comfort.

 

Myth: If you have an ostomy, your significant other will not love you the same way.

Fact: It is common to have anxiety about relationships following ostomy surgery. Be open and honest with your partner about any concerns you have. Remember, having an ostomy is nothing to be ashamed of.

 

Myth: Odor is a part of life when you have an ostomy.

Fact: You will become more comfortable with your ostomy pouch over time, and will gain confidence in its ability to retain odors.

 

Myth: Now that I have an ostomy, I am no longer able to enjoy the foods I love.

Fact: Right out of surgery, you may be more sensitive to foods than you will be in six months. Slowly add different foods to your diet, and pay attention to your body’s response.

 

Myth: I have a colostomy or ileostomy so I shouldn’t be passing anything from my rectum. 

Fact: The colon or rectum may produce mucus even after ostomy surgery. If you have questions about your output, contact your healthcare professional.

 

Myth: I can’t get my pouch or wafer wet, which means I can’t enjoy water activities or bathe with my pouching system in place.

Fact: You can shower, go swimming, or even get in the hot tub with your pouching system in place. If using a pouch with a filter, cover the filter with the covers provided.

 

Myth: Don’t shower without your ostomy system off.

Fact: You can shower with or without an ostomy system in place.

 

Myth: An ostomy prevents you from wearing stylish, form-fitting clothing. People will be able to see that I have an ostomy.

Fact: Before you had ostomy surgery, did you notice an ostomy pouch on other people in public? Probably not. Try a wrap or special undergarments to help conceal your pouch and increase your confidence.

 

Myth: Insurance doesn’t cover ostomy care, so I am paying out of pocket for my supplies.

Fact: Contact your insurance coverage provider to understand what your insurance plan covers and pays for ostomy supplies.

 

Myth: You should rinse and/or reuse your pouches.

Fact: It is not recommended to rinse or reuse ostomy systems, pouches or wafers. Water can make the barrier break down faster and damage the filter of the filtered pouches.

 

Myth: People living with an ostomy cannot fly, because the cabin pressure can cause the pouch to fail.

Fact: People living with an ostomy can fly, ride in a car, or use any other mode of travel.

 

More information from ConvaTec

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Dating With An Ostomy

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Don’t Let Your Ostomy Stop You From Dating!

Easing back into the dating scene may feel scary and impossible, it’s normal to want to take your time and get comfortable with your daily routine before tackling dating. It is possible, however, and going on dates might actually help to increase your comfort and confidence.

Finding the Perfect Date Location

When you are ready, choose a location that is familiar to you. If it’s not too far from home and you already know where the restrooms are, you will feel more in control of the situation and it will ease your mind. You can choose to keep the first couple of dates casual and relatively short to ensure your comfort.

You might even want to get together with a close friend who knows about your ostomy and go out shopping for a new outfit, something that will make you feel positive and bold. If the location of the date is unknown to you, use this time to also stop by and get a feel for the environment. It’s fine to want all the information ahead of time so all you need to worry about during your date is seeing if there’s a romantic spark.

Are Things Beginning to Heat Up?

Of course if things are beginning to heat up with someone, you will probably want to think about sharing about your ostomy. Remember that it’s completely up to you when and how to do this. It may be helpful to write down what you want to communicate beforehand to help with your confidence and directness. Feel free to keep it short and then offer to field some questions that your new partner might have. Remember, if a romantic interest can’t accept you as you are, they are not the one for you.

More Resources

If the idea of ostomy sex makes you nervous, it may be helpful to talk to someone who has been down that road before. Speak with someone who has experience living with an ostomy to find out how they navigated similar situations. Your nurse may have information of local networks or support groups. You can start your search to meet others in your situation on our website.

Find our additional information on intimacy and your stoma.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

LeeAnne Hayden’s Story

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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.

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.

Singer’s Ostomy Past Leads Him to Partner with UOAA

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Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

Intestines Are Soooooo Overrated

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UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.