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.
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.
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.
“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.
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.
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:
Youtube: Damon Little Music
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.
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.
Expect More – Take Control of Your Health Care
Part 3 in Series
By Jeanine Gleba and Keagan Lynggard-Hysell
The Choice is Yours
Having the right ostomy supplies for your individual lifestyle and stoma type plays a huge role in the quality of your life. As a new ostomate I fell victim to the common misconceptions that daily leakage and skin irritation were normal occurrences that came with the territory of having an ostomy, when in reality I was going through unnecessary struggles due to the fact that I wasn’t using the best products for my individual situation.
For those unfamiliar with my story, shortly after my diagnosis of Crohn’s disease in 2005, I was rushed to the Emergency Department with a bowel perforation and underwent my first ostomy surgery. After the operation, I endured many complications due to several different infections and the severity of my disease. I was hospitalized for a consecutive 8 months and would face 5 more surgeries within that first year of my diagnosis, all resulting in either a colostomy or ileostomy. Being in the hospital for essentially the first year of having a stoma, I was limited to the ostomy supplies provided by the hospital. Once I made the transition home and was receiving home health care I continued using the same supplies I had been using in the hospital simply because it was all I had ever known.
For the first few years of living with my ostomy I was isolated by the insecurities fueled by daily pouch leaks, chronic skin irritation, and the fear of experiencing a leak or unexpected odor in public. It wasn’t until I got to the point where my peristomal skin was so excoriated and I could no longer keep a pouch on for longer than a few hours that I finally made an appointment to see a WOC nurse.
During my appointment, not only were my skin issues addressed, but my WOC nurse introduced me to a new ostomy appliance and accessories that would work best for my individual stoma and lifestyle. I was given a product catalog which my WOC nurse had marked with tabs on the new products we used that day so I could order them for the upcoming month as well as any samples of other supplies I was interested in trying in the future. That day, I left my appointment feeling comfortable and confident in my new ostomy appliance.
As time went on, I no longer experienced the daily leakage or skin irritation that I had with my previous appliance, and this drastically improved my quality of life. I was no longer worried about odor, or ruining my clothes, I felt more confident in public and was able to participate in the activities I had once restricted myself from doing out of fear that my ostomy appliance would not stay on properly.
As ostomates, we are fortunate that manufacturers continue to improve our ostomy supplies. For the last 13 years that I have been living with my ostomy I have benefited greatly from product innovation and feel confident in the ostomy appliance I wear today.
As an ostomy patient advocate, I am often invited to share my story with nursing students, WOC nurses, as well as other health care professionals. By providing the patient perspective, I encourage them to educate their patients on the supply options available and that a patient’s ostomy appliance plays a huge role in their everyday life.
It’s important to remember that our stomas may change, our bodies may change, and more often than not- our ostomy supplies may change- and that is okay! The most important thing to remember is to seek out the most optimal pouching appliance for you so that you may live the life you love and want to live. The most important thing to remember is, whatever works best for you and your individual stoma.
Know that you have Ostomy Product Choices
As listed in the UOAA Patient Bill of Rights, ideally before patients are discharged from the hospital they should be informed of the pouching system that has been prescribed to them as well as have an understanding of the ostomy supply ordering process. In addition to the pouching system prescribed, patients should be provided with information on the supply choices available to them once they are home.
When in the hospital, your ostomy supplies are included as a part of your treatment of service. To keep costs down, the hospital only has a small selection of ostomy products from a particular manufacturer vendor that they contract with. As a result patients are initially limited to whatever ostomy supplies the hospital uses. Know that you are not locked into any pouching system and that you have many choices to find the ideal system for your stoma and lifestyle. (It should be noted that many patients stay with their initial hospital brand and are very satisfied with these supplies.)
Before you leave the hospital be sure to get the product codes for the specific ostomy supplies used while in the hospital. Request that extra ostomy supplies be sent home with you upon discharge to ensure you have enough on-hand until your first order arrives at home, or until your first home nurse visit if you will be receiving home health care. Don’t forget to ask about being enrolled in one of the discharge programs that are sponsored by ostomy manufacturers.
It is completely normal for your stoma size to change in the weeks following surgery, so what was initially prescribed in the hospital might need to be altered.
As always it is strongly encouraged that you work with an ostomy nurse to find the best products to meet your needs and particular situation. Manufacturers’ also have WOC nurses available to discuss any issues or answer your questions if you do not have a WOC nurse/OMS available in your area. Their services are free of charge and they are dedicated to helping you.
When you are ready, feel free to experiment with different manufacturers or different types of products. It may be helpful to order a product catalog from your medical supplier, so you can see the different products available and what assortment you have to choose from. Also, either you or a family member can call the manufacturer’s toll free 800 number and request product samples, or ask your supplier for a sample.
Know Your Pouching System
In the ostomy world, it is wonderful to know that there are many different styles and types of pouching systems available, and that manufacturers are continually improving their styles and selections. Manufacturers listen to ostomy nurses and to patients as they seek to improve the lives of ostomates.
It is good to understand the basics of pouching systems and then advance your knowledge as you become familiar with your own system. Once you gain confidence in the terminology, you can begin to explore options for yourself. Please use this link to learn about the different types of options available. Another excellent resource is here.
Know Supplier Options
The major manufacturers do not sell supplies directly to ostomates. Furthermore, ostomy supplies are rarely available for purchase in chainstore pharmacies such as CVS or Walgreens. Before you begin ordering ostomy supplies, itis important to do your research (read online reviews too) and carefully consider your options when choosing your supplier (Under Medicare these are known as Durable Medical Equipment providers.). Some things to consider when choosing your supplier: affordability (reasonably priced), reliability (on-time delivery) and reputation (quality service). You should also know the answers to these questions before deciding on your supplier:
- Do you want to shop at and support a small local medical/surgical supply house or order from the convenience of home through a large mail-order house (aka national online vendor)? There are pros and cons to each but typically national vendors carry a wider range of products, many (but not all) accept Medicare assignment and due to higher volumes can offer lower pricing.
- Do they accept your health insurance?
- What are the prices before and after your deductible is met?
- Do you have to submit the claim for reimbursement to your insurer or do they directly bill the insurance company for you?
- Do they carry all of the products that you need for your unique pouching application system?
- Do they stock and keep current with the latest available in ostomy technology and do they suggest new products?
- If you are on Medicare, do they “accept assignment”?
- What is the return policy or how do they handle product issues such as defects or incompatibility?
- Do they only ship in quantities for 30 days (1 month) or also offer 90 day (3 month)?
- Do they charge shipping?
- Do they impose their own quantity limits on supplies?
- How long does it take to receive orders?
- Do they help rectify insurance denials and work on appeals?
- Do they work with your doctor to renew your prescription or if you need a change to your supply order?
- Do they have personalized customer service with helpful reps knowledgeable about ostomy supplies?
- Do they offer free ostomy nurse consultations to give you tips and guidance?
Tip: Be sure to have a back-up supplier in case your normal provider has a disruption in service or is waiting for your type of supplies on back-order.
Know what Information is Needed to Order Supplies
It’s helpful before you place an order to have all of the information about your pouching application system ready. The most important thing to know when placing an order is the order number for your particular supplies and accessories. The order number will tell the supplier what kind of pouch and accessories that you use. If you are ordering for the first time or switching suppliers, be sure to know the type of ostomy appliance and any other accessories that you use. Include the pouching system product, size, and product number. Download the UOAA Know Your Pouching System (Appliance) Checklist tool to have handy.
Knowing your current ostomy appliance and accessories, where and how to purchase them, that options are available in product selection, and that you have a choice in all of these decisions helps to make you in control of your ostomy health care. In addition, utilizing the resources available to you through your ostomy manufacturers, suppliers, and ostomy nurses will help provide the best experience with your supplies.
It is important that you are able to advocate for the right ostomy supplies that work best for you and your individual stoma so that you can feel confident and live well with your ostomy.
Please note: UOAA does not endorse particular products, manufacturers, or suppliers, and is not responsible for any content expressed in sponsor websites.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm (Wednesday until 2pm) EST. If you have an emergency, please dial 911 or contact your local medical professional.
UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
Join our national advocacy network and take action on issues that affect the quality of life of all people living with an ostomy or continent diversion in the United States. Help UOAA make an impact on decision-makers and together we can drive change.
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