Posted By Jenna A. Bertini,
Thursday, January 5, 2017
Updated: Friday, January 6, 2017
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The Society does not endorse or support products or services. This is a guest blog post written by ostomy patient and advocate, Dawnette Meredith.
If you have a story you would like to share, please email email@example.com.
Awesome Ollie the Ostomy Bear
This is me, a 50-year-old woman completely thrilled about a very expensive stuffed bunny from overseas. Ridiculous you say? Well, this is a very special bunny. It has an ostomy just like me! I underwent ostomy surgery in December of 2016 after battling severe colonic-inertia for 49 years, 9 months and 15 days. My bunny was a bright spot in my recovery. It was a daily reminder to smile and laugh at an otherwise less than ideal situation. For heaven’s sake, I’m a grown woman, but there I was showing off my stuffed bunny to family and friends! It somehow made it easier to talk about my illness and recent surgery.
This little bunny sparked in me a hope to pass along positivity to other ostomates, and a dream to give children in the United States who undergo ostomy surgery a teddy bear with an ostomy. I designed a Teddy bear with a red button for a stoma and a removable Velcro ostomy pouch. Awesome Ollie the Ostomy Bear was born.
There’s no better place to start than in your own back yard. Rady Children’s Hospital, near my home in San Diego, which performs roughly 120 ostomy surgeries per year, was the perfect place to begin. I know from personal experience that ostomy nurses are essential to helping patients recover and cope after ostomy surgery. My husband and I sponsored eight Awesome Ollie Ostomy Bears and delivered them to the ostomy nurses at Rady Children’s Hospital. The ostomy nurses were given the joyful task of handing out the bears to their ostomy patients. The response was overwhelmingly positive, and soon Rady Children’s Hospital called for more bears! Soon, other children’s hospitals wanted to acquire the bears for their ostomy patients. I quickly needed to find a way to get bears sponsored in time for the holidays!
I approached my ostomy support group and its members with the possibility of sponsoring the bears for Rady Children’s Hospital. Within 20 minutes, over 30 bears were sponsored! Wow! I hurried to prepare the bears before Christmas-time. I like to think of myself as “The Ostomy Elf” busily working in my teddy bear workshop. In a flurry of fabric and thread, the bears were ready. The second batch of sponsored bears was joyfully delivered to Rady Children’s Hospital in December 2016.
It’s a new year and Awesome Ollie the Ostomy bear has BIG plans! The goal is to secure funding and provide free Awesome Ollie Ostomy Bears to children’s hospitals all across the United States.
If you or your organization would like to sponsor Awesome Ollie Ostomy Bears at a hospital in your area or purchase a bear for yourself, please contact me at Terrabusy@yahoo.com or 858-336-4418. Awesome Ollie sponsorship costs $20/per bear. Find Awesome Ostomy on Facebook to keep up on all the Ostomy Bear news.
Posted By Jenna A. Bertini,
Tuesday, December 20, 2016
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When I first got my ostomy, I felt very alone. I felt self-conscious of the smell and sound, and sometimes I longed for my old body. When I couldn’t take self-loathing anymore, I decided to make friends with my ostomy. I reached out. I inquired about support groups in my area and realized there are many people like me. I realized my ostomy is a beautiful thing and has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.
These are 10 things I would have liked to tell myself when I first had an ostomy — 10 things I didn’t know but eventually learned, which I am so grateful for today:
1. What it was.
I had no idea what an ostomy was before I had one. But I have a confession: I didn’t realize exactly what it was until a year later! Coming out of multiple surgeries, I had so many bags and new anatomical surprises to think about that a little pink bulge on my belly seemed to be the least of my problems!
I’ve learned things in the past 10 years that have shocked, scared and relieved me, such as: You can’t actually feel your stoma — no nerve endings! I’ve had three ostomies and four ileostomies over the years. I didn’t realize how different they were. Once I learned about the differences and functions of each, I was better able to take care of them.
2. What my limits were.
When I saw that I’d have to live life with a bag stuck to my side, I assumed I’d be “fragile” for the rest of my life. But believe it or not, there are so many activities for ostomates out there! Swimming, karate, ballet, yoga — I’ve done everything I did before my ostomy and more.
3. There are so many strong ostomates.
I was privileged to be the Eastern regional recipient of the Great Comebacks award and meet five other amazing ostomates doing incredible things. There is a huge, supportive ostomy community, including celebrities! Did you know Great Comebacks was founded by a former NFL linebacker?
4. Ostomates excel at innovation and inventiveness.
It turned out I was able to do all the things I thought I couldn’t — but that didn’t mean it was easy. Some of the best things in life take hard work, and that makes you appreciate them even more. Let’s just say that plastic wrap, Pepto-Bismol, waterproof tape and wet suits have become good friends of mine. I’ve even made a creative workshop for ostomy patients and healthcare professionals. The “Renegades” music video by X Ambassadors features a blind man who says it best: “It’s not a matter of enjoying it more or less; it’s about enjoying it differently.”
5. How amazing my body is.
I have a new respect for my body and the way it can function now.
6. Judgment hurts, but fear hurts more.
Stay informed and know the facts. The more I actually understood how an ostomy worked, the more I realized how wonderful it was. After that, I took it as my responsibility to educate others.
Instead of wondering if I was being “judged” by others, I took it as a privilege to inform them.
7. Everything is connected.
Take care of your full self: emotional, spiritual, mental and physical.
If you’re stressed you might get physical side effects, such as being bloated or feeling pain and discomfort. Remember to take deep breaths in difficult times.
8. The people who love you, love you.
If you’re just getting comfortable with your ostomy, remember that your support system loves you for who you are. You are more than your ostomy.
Reach out to the ones you love when you feel alone, and never forget how loved you are.
9. Eat fresh.
You are what you eat, so eat whole and nourishing foods. Your ostomy will thank you, and so will you!
10. Life can go on.
Throughout these years, I’ve been strong, determined and willing to do whatever it took to stay alive. I’ve dealt with tubes, bags, poles, you name it. And if this ostomy is all that I’m left with after everything, then I am truly grateful. More than that, I thank my ostomy for enabling me to live life to the fullest, to my fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality and life.
There are a few things I didn’t know before my ostomy. But what I look forward to most is everything left to learn. Thank you, ostomy, for making the world a wide open door once again.
Follow my journey.
About the author:
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress and playwright who is sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking.
As the creator of the Gutless & Grateful, a one-woman autobiographical musical, Amy has toured theaters nationwide, along with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre for college campuses and international conferences. Her original, full-length drama, Imprints, premiered at the NYC Producer's Club in May 2016, exploring how trauma affects family as well as the individual.
To celebrate her own “beautiful detour,” Amy created the #LoveMyDetour social media campaign, to help others cope in the face of unexpected events. "Detourism" is the subject of her TEDx talk and upcoming book, My Beautiful Detour, available December 2017. As Eastern Regional Recipient of Convatec’s Great Comebacks Award, Amy has contributed to over 70 notable online and print publications, and her story has appeared on NBC's TODAY, CBS and Cosmopolitan, among others. She has devised workshops for conferences nationwide and presented at the 2016 Northeast Region WOCN Conference, and is the 2016 keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. To learn about the art of navigating beautiful detours and to sign up for updates visit amyoes.com.
Posted By Jenna A. Bertini,
Friday, December 9, 2016
Updated: Friday, December 9, 2016
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How my journey as a double ostomate began:
I grew up in a loving family with five siblings. At the age of three, along with being a twin, I was developing my personality while enjoying time with my siblings, getting ready to start pre-school and feeling filled with joy. I had no worries in the world. I never imagined that one day playing in the backyard my clothing would start to fill with blood.
My parents rushed me to the University Of Maryland Medical Center (UMMC) in Baltimore. After several days of testing, the diagnosis was a rare form of vaginal cancer called Rhabdomyosarcoma. After receiving advice from medical physicians, my parents decided to transfer me to a hospital that specialized in this rare type of cancer.
My childhood, and most of my adolescent years, was spent at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. Along with chemotherapy, radiation and too many surgeries to count, I was faced with having two ostomies (a colostomy & urostomy) for rest of my life. The doctors, surgeons, social workers, medical staff and ostomy nurses made my life as normal as possible. The care they showed was beyond their medical titles and duties. My family is ever so grateful to everyone at MSKCC for their care.
After the age of 12, I was able to do my follow up visit back in Baltimore under the care of Dr. Fromm at UMMC. Since 1995, I have been under the care of Dr. Faud Abbas at the Sinai Hospital of Baltimore. I look forward to my doctor visits. When you find a doctor like Dr. Abbas, you feel comfortable knowing your health is in good hands.
Since having two ostomies from the age of three, my life has proven to be a journey of unexpected challenges. While others appeared to be living a “normal life,” I struggled with self-pity, unhappiness, depression and low self-esteem. I found it hard, embarrassing and painful to be considered “different.”
How I dealt with what life had dealt me:
My parents taught me to love myself and to know that my medical circumstance does not dictate my future. Their faith in God helped me to know I was going to be alright.
The support from my family and friends made my life feel normal again. I contacted my local United Ostomy Associations of America, Inc. (UOAA) chapter for support. I discussed different ostomy products to try with ostomy nurses. If a product worked for me, I stuck with that. I dealt with leaks and blowouts by keeping extra clothes and products in my car, at work and at friends’ houses. I still do not dwell on leaks; I clean up and keep moving. When you accept being an ostomate, others will. It is what it is and no one is to blame. If you lived your life before you had an ostomy there is no reason why you cannot live your life with one. Love the essence of who you are.
What helped me to accept my ostomies:
The mantra LIVE FOR TODAY - don’t dwell on what happened yesterday and enjoy the moment is what helped me to learn that I am more than my ostomies.
Advice for my fellow ostomates:
I encourage other ostomates to get out and try activities and hobbies such as sports, reading, having fun, laughing, attending support groups, leaning on family for support and seeking out to the WOCN Society for additional support. And do not let your ostomy pouches stop your fashion style! Try different styles of clothing to see what makes you feel confident - the best fashion style we have is our inner beauty.
I am blessed to have my desires, passions and dreams come true. I am a double ostomate and have been a fashion model for over 17 years. Through my career, I am helping cancer survivors, encouraging ostomy patients, guiding aspiring fashion models and inspiring those suffering with low self-esteem. Just by looking at my outer appearance, no one could ever tell I live with these medical adversities and what I deal with 24 hours/7 days a week.
We all have the ability to make a difference, to change lives, to be a role model and be all that we can be as an ostomate.
I know am beautiful from the inside out, despite my life being a journey of unexpected challenges. I am trying to change the lives of others by telling my story through my book, Pretty Girl Blues: An Autobiography, my intimate journey of being a survivor. The adversities and obstacles that I overcame allow me to encourage, inspire and motivate others to “live their life on purpose with a purpose for a purpose.”
About the Author:
Jearlean Alston-Taylor was born and raised in Southwest Baltimore, MD. She grew up in a happy home with five siblings, including her twin sister. At the age of three, Taylor was diagnosed with a rare form of cancer. Doctors thought she would not live to see four. Today, Taylor has beaten all odds and uses writing and modeling as an outlet and a way to connect with other ostomates. Taylor is the CEO of J & Company Christian Modeling and Osto Beauties.
Posted By Jenna A. Bertini,
Tuesday, September 6, 2016
Updated: Tuesday, September 6, 2016
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Society member Joanna Burgess, BSN, RN, CWOCN, shared her experience about growing up as an ostomate and her contribution to the members-only document, Pediatric Ostomy Complications: Best Practice for Clinicians.
You can read Joanna's story below, and if you have a story you would like to share please email us at firstname.lastname@example.org.
Almost a decade ago, as a wound, ostomy and continence (WOC) student at Emory University, I was mentored by Michelle Rice, MSN, RN, CWOCN, a clinician at Duke University Medical Center. I remember being intrigued by the unique needs of the pediatric population, in particular, the neonates; some of which had multiple stomas from necrotizing enterocolitis. Michelle’s unique knowledge on how to handle the delicate neonate population came from years of experience and the dedication to assisting new parents with the physical and emotional needs of caring for an infant or child with an ostomy. Therefore, it was an honor to work with Michelle and other well respected wound, ostomy and continence nurses who have specialties in pediatric ostomy care to create the WOCN® Society’s members-only document, Pediatric Ostomy Complications: Best Practice for Clinicians.
Working with the WOCN Society’s Pediatric Ostomy Task Force of the Ostomy Committee and collaborating on the Pediatric Ostomy Complications: Best Practice for Clinicians was a personal experience for me and an undertaking that I dedicate to my father, who was the primary caregiver of my ostomy in my growing years. In Boston 1965, when I was just three years old, something that was suspected to be a simple urinary tract infection quickly turned into a diagnosis of rhabdomyosarcoma of the bladder. My original surgical treatment was a cystectomy and creation of ureterosigmoidostomy, generically known as a “wet bladder.” However, due to multiple kidney infections I experienced from the procedure, the creation of an ileal conduit quickly followed. All of this occurred during a period of time when there was no ostomy nurse at Boston Children’s Hospital to teach and support my family, and there was no access to online resources.
My father’s recollection of the experience was that the nurses seemed frightened to care for me. He remembers being handed a brown paper bag containing a few ostomy supplies at the time of my hospital discharge. He recalls returning home and fumbling through the packaging of an unassembled seven-piece pouching system. Through trial and error, he eventually mastered how to assemble the pouch, but he couldn’t figure how to keep it on me! To his relief, the packaging contained the phone number for the ostomy supply company Torbot, located in Rhode Island. My father and I quickly made the four hour trip from Boston to Rhode Island and met with the founder of Torbot, an ostomate, who showed my father how to care for my urostomy. My father was so overwhelmed with finding a confidant in the ostomy world, he even bought me a lifetime supply of products “just in case they ever stopped making them.”
Growing up with an ostomy became a part of my life, it seemed normal and was all I ever really knew. The only problem I can remember was an occasional itchy skin condition, sometimes causing me to scratch to the point of bleeding. This bleeding incident happened once in the first grade, and I remember my teacher was terrified as she scooped me up in her arms and ran down the hall to the school nurse. There was no doubt the problem with my skin came from the layers of bonding cement that was used to keep my ostomy pouch in place. The only remedy then was to apply karaya powder to the skin, which stung and was painful. There were also metal clips on my ostomy belt that would dig into my sides, but I learned to live with the fear that without the belt my pouch would leak or fall off. Despite these few irritations, I don’t remember feeling limited because of my ostomy. I continued to do the things I loved, such as swimming and dancing.
I had close friends who knew about the secret that I wore under my clothes. I remember my mother would coach me on how to discreetly change my clothes at slumber parties so no one would notice my pouch. This skill served me well in my later years of junior high and high school gym classes, where I was expected to change clothes in front of other young women in the locker room. I admit, I did feel very alone. I remember wishing and longing to know someone like me – someone else who wore an ostomy pouch. Since childhood, I have connected with several adults who also grew up with an ostomy and were treated during my era. That feeling of being alone would have been greatly alleviated, for both my family and I, had us ostomates known how to connect with one another.
Thank goodness we now know today how the times would change; how ostomy nursing would become a career that would involve not only care of the patient’s ostomy, but ongoing education in building confidence and independence with self-care and emotional support. We now know that products would go through many changes and improvements and that product development would be an ongoing process by dedicated companies and researchers.
Today, we have much more knowledge concerning the care of the pediatric patient and have many more products available to ease the challenges that face this population. As an ostomy patient and ostomy nurse, I currently share my story across the country. I am continually reminded of the need to reach out to families who have children living with an ostomy and connect them to the resources they need to aid the emotional and physical aspects of ostomy care. I am also reminded that we need more ostomy nurses caring for the pediatric population. These families sometimes search for weeks, months or even years looking for help.
In creating the Pediatric Ostomy Complications: Best Practice for Clinicians document, it is the hope of the WOCN Society Pediatric Ostomy Task Force that these best practices will give ostomy nurses, and any nurse who works with pediatric ostomies, the confidence needed to take on the challenges the pediatric population faces, from stoma to peristomal complications. When nurses feel empowered, parents will ultimately feel empowered to take on the responsibility of their child’s care with greater ease. The WOCN Society looks forward to hearing your comments about the Pediatric Ostomy Complications: Best Practice for Clinicians document, and encourage you to keep track of your own personal stories and suggestions as the WOC community continues to strive for success for the pediatric ostomate.
Joanna Burgess, BSN, RN, CWOCN is a full scope practicing Wound, Ostomy and Continence nurse at WakeMed Health and Hospitals acute care center in North Carolina. Joanna’s passion for ostomy care stems from her 50-year journey as an ostomate, after being diagnosed with bladder cancer at the age of three. Joanna’s contributions to the WOC practice include serving on the Wound, Ostomy and Continence Society™ (WOCN®) national Ostomy Committee for three years and contributed to the Wound Care Core Curriculum Textbook, in which she wrote on the topic of lymphedema. Joanna is the 2011 Great Comebacks® award recipient and has shared her story on a state, national and international level. She is a board member for the United Ostomy Associations of America, Inc. and she is the 2016 South East Regional WOC nurse of the year.