Posts

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.  

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!