Scott Steehn’s Story

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Finding Hope in the Stories of Others

By Scott Steehn

All stories have a beginning, and mine is no different. It started on a cold, slate-colored February day in Erie, Pennsylvania in 1992. I was a successful standup comic who had headlined clubs and theaters in all 50 states and seven foreign countries. I was recently engaged to my soulmate, and we were making plans for a big October wedding. I was just finishing up a great week at a terrific comedy club in Erie and, as I prepared for my two shows on Saturday night, I felt like everything couldn’t have been going any better. But, in just 12 hours, none of those things would matter.

It started when I was onstage during the first show. I began having abdominal pain on my left, lower side. It wasn’t a huge pain and mainly felt like a had a fairly intense need to move my bowels. I finished up my show and made a beeline to the restroom. And…nothing happened. Nothing at all. The NEED was still there, and, in fact, it was getting worse. I, of course, had been constipated before, but this felt somehow…different.

I did my second show, but the pain was now almost unbearable. I headed back to my hotel, stopping only at a drugstore to pick up a laxative. I had convinced myself it was just constipation and had even assigned the blame to the shrimp dinner I’d had the night before. “Fresh Shrimp” in February…in Erie?! What did I expect to happen?

I took the laxative. And I waited. And tried. And waited some more. And then the pain got bad. Real bad. I could barely walk and couldn’t move without intense pain shooting out from my left side. Now I had a new theory. Burst appendix. This was before the days of Web MD, and I was limited to only what my imagination could conjure to freak myself out. So, not wanting to die a ridiculous death in the Erie Hilton, I called a taxi and headed to the hospital.

They got me into an exam room in short order. The doctor examined me and, taking advantage of his fancy medical degree, immediately eliminated appendicitis. So much for that. He then told me he had an idea what it was but wanted an MRI to confirm the results. A quick trip through the “donut of doom” confirmed his initial diagnosis. It was something called diverticulitis. He explained how we all have small abscesses in the colon and how they usually don’t cause any problems. Sometimes, however, those abscesses become infected. It causes horrible pain and constipation, and once it gets this bad, it has to be treated with antibiotics and mass quantities of fluids. I spent a painful week in the hospital and was discharged with very specific instructions on how to adjust my diet and lifestyle to prevent a recurrence. I thanked all the staff for the great job they did, signed some papers, checked out…and promptly ignored his instructions for the next 20 years.

Christmas Eve, 2012. My wife has had enough. The final straw came when I was unable to make it upstairs for the family gift exchange. As soon as it was over, she came down and told me we were going to head to the emergency room. I didn’t have the energy to argue. Plus, I knew she was right. I’d been feeling terrible for almost three years. Something was definitely not right. It seemed like it emanated from the “diverticulitis spot” that I had become intimately familiar with due to the flare-ups I suffered through two or three times a year. The only confusing part was I had undergone a colonoscopy six months prior and had received a clean bill of health. Only much later did I learn that I had received a negligent result. My doctors all agreed- there was no way my problem could have been missed.

I should have known I was in trouble when, after the emergency room doc saw me initially, he asked me if I’d like anything for pain. I jokingly said, “Sure, how about some morphine?” He immediately replied, “Okay, we’ll get that going for you.” Uh oh. A little later he told me I had a blockage that had been caused by a buildup of scar tissue from the repeated flare-ups of diverticulitis. They needed to get rid of the infection and then remove the two damaged sections of bowel. Surgery was scheduled for New Year’s Eve. Merry Christmas and Happy freaking New Year!

I spent the next week in a morphine haze. I met my surgeon, a brilliant young lady who looked impossibly young for someone with that much schooling. She explained that they were hoping to remove the damaged sections laparoscopically. It was a relatively simple procedure that would require a couple of days of recovery in the hospital, a week or two at home, and then back to my normal life. The alternative would be invasive surgery, much longer recovery time, and, while the healing took place, I would need to have a colostomy. Due in part to my opiate fog and also due to my refusal to accept reality, I was 100% convinced everything would be done laparoscopically. No worries.

The first thing I noticed when I came to was something in my throat. Something huge and foreign. As my world blinked into focus, the nurse was there to explain to me that the damage was much worse than they had anticipated. Full surgery had been performed and I was going to be in the hospital for a while. The drugs were very helpful in allowing me to deny exactly what exactly that meant. I was much more concerned with getting the tube out of my throat and the catheter out of the other end. That cavalier attitude about my situation would soon change.

The nurses and staff were great. They changed my colostomy bag for me and allowed me to STILL not grasp my situation. That all changed when I met the ostomy nurse. She was tasked with teaching me the intricacies of daily life with a colostomy. Reality came crashing through the door when I spent 30 minutes hiding in the restroom in tears unable to change my bag. I can’t do this! This isn’t fair! (Conveniently forgetting the 20 years I had spent ignoring my doctor’s orders) Gathering myself, I sucked it up, and FINALLY was able to do it on my own. I was discharged and sent home to recuperate and heal for 30 days before heading back to the hospital for takedown surgery.

I’d like to tell you a story about how well I adjusted. About how I was brave. About how I was thankful to be alive. About how I now appreciated my friends and family even more. About how I would now refused to take all the beauty of life for granted. That’s the story I’d like to tell. But I can’t. It would be a lie. Even though none of you know me, I promised myself I would be 100% honest about my journey. Warts and all. So here goes.

It was awful. I hated every minute of it. I thought having a colostomy was gross. And hard. Life wasn’t fair. NOTHING was fair. I can’t do this. There were the usual indignities. Accidents. Broken seals. Excess gas. I was in hell. Never for one moment did I think how my situation affected those around me. How my actions and attitude affected my family, and, my wife in particular, who only wanted me to get better and get back to being the man she married. As an added bonus, I was also taking 12 Oxycodone a day for pain, and, rightly suspected, now had a raging opioid addiction. My day consisted of sleeping, crying, bitching at my family, thinking about death, and dealing with my new, hated, appendage. Day after day. Rinse, lather, repeat.

Then, one day while noodling around on the internet, I found UOAA. I started reading about my condition. And I started reading other people’s stories. I found out just how many dealt with this particular challenge. I was stunned. And the more stories I read, the more my respect grew. People who had to deal with this for years. For decades. Tears streamed down my face as I read their stories. I’d love to tell you everything changed that day. How my attitude changed overnight and how I became Mr. Positivity. Alas, it wasn’t that simple.

What DID happen, is I became embarrassed about my actions. I had always prided myself on being a tough guy who dealt with problems head-on. The more I read on ostomy.org, the more I knew this was a lie.

Every day I read the stories of real heroes. Men and women who possessed the biggest superpower of all, the ability to live a normal life despite adversity that was currently bringing me to my knees. To say they inspired me, would be an understatement. Closer to the truth would be, they saved my life.

They gave me practical advice, “insider tips” on everything from bathing to sex, and something I hadn’t felt in a long time. They gave me hope. I never posted on the UOAA discussion board. Hell, I don’t think I even registered. Due to my “temporary” status, I really didn’t think anyone wanted to hear my whining. If everything went well, my life would go back to “normal,” while these people would continue to lead quietly heroic lives day after day, year after year. I didn’t feel worthy. And I still don’t.

That’s my story. Sure, there’s more, including an unsuccessful takedown, massive infection, emergency surgery, and an ileostomy for a few more months. There was a wound vac, and an in-home nurse to change my dressing daily. And, of course, after 6 ½ months of daily opioid use, I still had to deal with that King Kong-sized habit. Yet, in the end, I was okay. It probably took almost two years to feel like me again. And even that isn’t completely accurate.

I recovered, I felt better physically, but “myself” was different. I was more appreciative, more humble, and more thankful. I was well, but I’d never be the same.

So, thanks for reading. Thanks to Ed Pfueller for giving me an opportunity to share my story. Thanks to the whole team at UOAA and, for that matter, all of the sites designed to educate, inform, and help everyone on this particular journey. Lastly, more thanks than I could ever express to all the men and women who bravely shared their stories through blogs and forums. Thanks for your bravery. Thanks for your humor. And thanks for giving me the courage to understand and accept my condition with, what I hope, was grace and determination that would make you all proud. God bless each and every one of you and may your lives be full of the joy and love that you so richly deserve. I am forever in your debt.

 

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.

Coronavirus Effects on the Ostomy Community

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The ostomy community is understandably very concerned about how the COVID-19 outbreak is affecting their daily lives, health, support networks, and access to ostomy supplies.

In this time of great uncertainty, UOAA recommends all individuals consult with their own primary care physicians with questions concerning their risk factor or if they exhibit any symptoms. Please follow the Center for Disease Control (CDC) website for actual up to date information. We recognize that many people living with an ostomy or continent diversion are older people and those with chronic disease and are therefore at higher risk of developing serious illness. Please also see CDC guidelines for people at risk. 

UOAA is also hearing from many Affiliated Support Groups who have prudently decided to cancel their upcoming meetings. Members should expect that their meetings will be canceled for the foreseeable future. Affiliated Support Groups are each independently run and members should contact their local leaders if they have any questions about their meetings. Community guidelines are also available from the CDC to assist leaders in deciding steps they should take to address public health concerns.  

UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of March 4, 2020 none of the manufacturers reported any issues in their operations as a result of the COVID-19 outbreak. Read our previous blog post for statements from individual manufacturers on this topic. Check with your distributor to see if there are any shipping delays due to increased demand of all goods at this time. 

If you develop a fever, cough and have difficulty breathing always contact your healthcare provider. They will determine if you are a candidate for a COVID-19 test. Medicare and private insurance should cover a test to see if you have coronavirus if requested from a physician. Additionally, Medicare is offering telemedicine options so people can stay home as much as possible during this crisis. Contact your private insurer to discover any additional benefits they may be offering at this time. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

UOAA will update this blog post with any information that may affect our community. 

UOAA Advocates Making an Impact on the Hill

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By Jeanine Gleba, UOAA Advocacy Manager

The Digestive Disease National Coalition (DDNC) is an advocacy organization composed of the major national voluntary and professional societies concerned with digestive diseases. DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients.  UOAA has been a member of this coalition for many years.

Each year the DDNC hosts a Spring Public Policy Forum. This year they celebrated their 30th anniversary! This special event was a two-day advocacy conference held  March 1-2, 2020 that brought together patient advocates, health care providers, and organizational members of coalition. Passionate and dedicated advocates traveled from 28 states all across the country and Washington DC. Over two days, attendees heard from multiple panels of leaders in the digestive disease community, attended a reception celebrating the coalition as well as its champions, and advocated for medical research and patient care on Capitol Hill. 

UOAA had five ostomates representing UOAA and the ostomy community. We are grateful that Lacee Harper, Rena Münster,  Michael Quear, Mollie Tinnin and Lynn Wolfson joined UOAA President, Susan Burns, and myself in Washington, DC. They spoke up about improving treatment for digestive diseases, shared their ostomy story and advocated for legislation such as the Removing Barriers to Colorectal Cancer Screening Act and the Safe Step Act. While mingling with attendees, we also had the pleasure of meeting a new ostomate advocate, Nancy Pedersen, and a mother of a young daughter with an ostomy, Jessi Richards, who was attending as a representative for the Megacystis Microcolon Intestinal Hypoperistalisis Syndrome (MMIHS) Foundation. We hope both of them will advocate with UOAA in the future.

UOAA Advocates at DDNCThe greatest take-away message from honorees and guest panelists was the impact we make on the Hill.  For example, it is truly because of patient advocates sharing their stories that we have seen increases in medical research funding. To give you a glimpse into my day on the Hill, I was on Team 6 with a surgeon from Nebraska and an IBD patient advocate from Connecticut.  I found we were met with very positive responses by legislator staffers in the Senate and House. In many cases, the offices we visited were already co-sponsors of the different legislation pieces and this occurred on both sides of the aisle.  They certainly all “got” the Safe Step Act and need for proper gluten labeling. When I followed up with my Congressional office (NJ Rep. Josh Gottheimer), they informed me that they have now signed on to the Medical Nutrition Equity Act (H.R.2501). Our visit and advocacy message resulted in a positive outcome!

New this year we advocated about non-medical switching as it relates to ostomy supplies.  It can take patients and their medical team quite a while to find the right “fit” ostomy pouching application system. However, we are finding for example that insurers in some cases are restricting consumers to specific brands, some suppliers switch outpatient preferred choice of products for non-medical reasons such as cost and patients are restricted to using a different brand such as a generic, which do not always have the same quality or reliability. Ostomy supplies are prosthetic devices and a person’s complete pouching system is customized for their unique stoma fit and individual needs. It is not okay for others to just switch that out!  We urged Congress to limit out-of-pocket costs and curb current and future payer tactics proactively.

UOAA will continue these advocacy efforts throughout the year. If you have experienced your supplies being switched out for non-medical reasons and it resulted in restricted access to your preferred products or an increase in your out-of-pocket costs or it negatively impacted your health or quality of life, submit your story HERE.

Coronavirus is Not Affecting Ostomy Supply Production

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Updated: 4/10/20

The coronavirus is spreading around the world and some in the ostomy community are concerned if it will affect their access to ostomy supplies. UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of April 3, 2020 none of the manufacturers are currently reporting any issues in their operations as a result of the COVID-19 outbreak.

As with any natural disaster personal preparation is key and there are many steps you can take now to be prepared for any unexpected impact in your life or community. For those who become ill or have a compromised immune system, always contact your physician with any concerns. If you are on Medicare Part B (Medical Insurance) and become ill it covers a test to see if you have Coronavirus. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

These are the latest statements and information from leading ostomy product companies, they will be updated as needed.

11 Health

At 11 Health we understand that the challenges of COVID-19 extend beyond the needs of patients who are suffering from the virus. Our ostomy patients tell us that hospitals are cancelling their appointments and people are struggling to access their doctors and nurses; a big issue for people suffering from a chronic illness. That’s why we have launched our free 12 week remote patient monitoring Alfred SmartCare program to support ostomates using our patient coaches, tele-health nurses and dedicated app to provide a pro-active and preventative wellness program. We encourage you to visit us @ www.11health.com

With regard to access to supplies, we continue to safely manufacture and distribute. We currently have stocks in house of all Alfred SmartCare products and moving forward we do not anticipate any issues with smartbag supply.

 Hollister Incorporated Statement on the 2019 Novel Coronavirus

In response to the global health emergency concerning the spread of the 2019 Novel Coronavirus (COVID-19), Hollister Incorporated has taken steps to protect our Associates, and seeks to ensure that our customers experience no disruption to the supply of their products. Hollister is diligently cooperating with our suppliers across the globe to identify any potential impacts the coronavirus (COVID-19) may have on our suppliers as well as our own operations.
At this time, based on the information received to date, we do not anticipate an impact to our ability to supply or to our other business operations.
Hollister Incorporated continues to monitor this public health threat and considers the guidance provided by the World Health Organization, the US and European Centers for Disease Control and other sources in managing our overall ongoing response to this public health emergency.
We reassure you that we are taking appropriate measures to help ensure our customers, our Associates and our operations are cared for during this critical time. We continue to monitor the situation closely.
For additional inquiries, please contact corporate.communications@hollister.com.

3/24/20 Secure Start Services A Message from the Hollister Incorporated Family – COVID-19

Coloplast Statement

4/3/20

We hope you are doing well. We realize at this time, many of you may be dealing with lots of changes in your personal or family lives related to the COVID-19 outbreak. How can Coloplast® Care help you in this time of uncertainty? We aim to be the connection that builds your confidence in living with your intimate healthcare condition.
At this time, more than ever, assistance from Coloplast® Care may be more crucial as people stay home. The Coloplast Care team is still here for you, and we have extended our hours to six days a week to better support you.
Our Care Advisors are available by phone from 7 am to 7 pm Central Time, Monday – Friday and additionally 9 am to 1 pm Central Time on Saturdays
Here’s how to reach the Ostomy team

Call: 1-877-858-2656
E-mail: Care-us@Coloplast.com

We are here to support you with wellness information, product access information, and ostomy product samples. We also have some great educational resources for you available online, 24 x 7.

We have a number of educational resources available for you at our website, and encourage you to visit our resources: www.ostomy.coloplastcare.us

Concerns about access to supplies

We continue to safely manufacture and distribute our products. Currently, the COVID-19 outbreak is not impacting our ability to supply our ostomy and continence products, so we encourage you to continue to order your supplies as you regularly would.

At a time when many are concerned about receiving their medical supplies, Care Advisors can help coordinate product access by helping match you with product dealers who meet your insurance needs. If you are having trouble reaching your dealer or getting your medical supplies, please call us and we will ensure that you can continue to receive the products you need.

To read more about the initiatives that we have put in place globally and for updates related to the coronavirus, please visit our website. Let Coloplast Care be your reliable source of information for your intimate healthcare needs.

Kind regards,
Your Coloplast® team

ConvaTec Statement

At ConvaTec, we understand that the COVID-19 (Coronavirus) situation is impacting everyone. We’re doing our part to be socially responsible while still ensuring that our customers can contact us and receive the support they need.

To keep employees and customers safe, we’ve adjusted our work arrangements, including work from home where possible, to maintain social distancing.  As always, our me+ team of Wound, Ostomy and Continence Certified Nurses and product specialists are available, by phone or email, to answer any questions or concerns you may have.

If you have any questions or concerns, please contact our ConvaTec me+™ Support Team at 1-800-422-8811 (M-F, 8:30AM – 7:00 PM Eastern Time) or email cic@convatec.com.

ConvaTec Ostomy Care Global Impact
Our Ostomy products, whether produced by ConvaTec or in partnership with outsourced partners, are not manufactured in countries with high levels of reported cases of Coronavirus, this includes China. The situation is changing daily and therefore, ConvaTec has a dedicated team tasked with continually reviewing the situation, maintaining close collaboration with our suppliers and logistics partners, and communicating changes as the situation evolves.

Nu-Hope Statement

It is our recommendation that ostomates keep at least 1 box of spare pouches at all times. (This recommendation is independent of the COVID-19 outbreak). We do not recommend stockpiling supplies as this will stress the supply chain and likely cause delays and disruptions to your regular orders. Nu-Hope offers ½ boxes for sale through certain dealers.

Safe n Simple Statement

Safe n Simple would like to assure all of the ostomy community that we are well stocked on supplies and do not foresee any issues or concerns with being able to provide products needed during the Coronavirus outbreak.

Jennifer Borchek’s Story

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A Journey From Caregiver to Student, Ostomy Patient, and Nurse

My name is Jennifer Borchek, and I am a recent graduate of Chamberlain University with a Bachelor of Science in Nursing. I am a licensed registered nurse. I also have a colostomy. While I know that my condition changed a part of me, I also know that it has never defined me, my career choice, or who I have become.

A Career Path of Care

My passion for nursing stems from the love and care that I showed for my ailing grandmother during her time of need. My grandmother suffered from many health issues that demanded around the clock care. At the age of 15, my mother and I became the primary caregivers for my grandmother, so we relocated into our grandmother’s home to care for her as her needs increased. This responsibility was not something I took lightly. I spent many nights rushing down the stairs to my grandmother’s bedside when I would hear the slightest sound that might mean she needed attention. Eventually, the running up and down the stairs and the weight of my worry became too much; I picked an empty spot on the floor near my grandmother where I would sleep with one eye and ear open. By the time I graduated high school, I had developed a good sense of care and a strong interest in continuing my path in health care. I decided what better way to use my experience than to become a certified nursing assistant?

After my certification, I attended a local community college to complete my general education requirements and earn an Associate Degree of Science with honors. This brought me closer to my dream career of becoming a nurse. During this time, my grandmother passed away, and I took a break from school to work in a nursing home. My caring nature was fulfilled at my job by helping others know that their loved ones were well attended to. While working in this environment, I knew I could achieve more, and I decided to apply to nursing school to begin my path as a registered nurse. Soon after, I was accepted into a Bachelor program for nursing. I knew that it would be a challenge to continue my education, as balancing school, work, and family could be difficult, but I also knew that my dream and ambitions were strong. I was ready to face the academic and scheduling challenges ahead, but I was not prepared for the unexpected health issues that I encountered along the way.

A New Path with a Slight Turn

One day, while walking between classes, I started to feel a nagging pressure in my genital area. It became sporadic and seemed to have no pattern or reason for occurring. It would oddly come and go regardless of what I was doing at the time. I thought it would just go away, but it persisted. I spent countless months going back and forth to the gynecologist with the same concern. Consistent medical testing provided no reasons for the pain. For more than a year, I felt as though I was wanting and eventually begging to be heard by the doctor. Examination after examination, I started to think that maybe this was all in my head, and at times some doctors and nurses suggested that too. This was eventually disproved one evening when I felt a sudden burst of blood run down my legs after a hot bath. I rushed to the emergency room only to be told that I was “fine” and to follow up with my gynecologist. I went home that night heartbroken and confused; how could this not be enough to diagnose my health issue? So, yet again, I booked another appointment and headed over to the gynecologist’s office that I’d been to so many times before. After I was examined, the doctor removed her gloves, looked at me and said, “This is not your vagina anymore; this is your rectum. Go to the colorectal surgeon and tell them that you’re bleeding.” She walked out of the room without saying another word. I couldn’t even begin to comprehend what she was saying. Why would I need a surgeon? What does a colorectal surgeon have to do with my vagina? I was filled with a furious, confused, frustrated rage, and I was scared. I left with more questions than I arrived with, and now I was heading into unfamiliar territory. Did I have cancer? What kind of surgery would I need?

I later booked an appointment with a knowledgeable and focused colorectal surgeon at a well-respected teaching hospital. It took three very long weeks for my appointment date to arrive.

Diagnosis over Despair

I met the colorectal surgeon and he told me I had to be diagnosed under anesthesia. He suggested it was an anal fistula during the initial appointment. I was not sure what this diagnosis meant or how it happened, but in all, I liked and trusted this doctor. I felt as though I finally found someone who understood what I was going through and could diagnose what I had been complaining about for over a year. I scheduled the procedure during my one-week break from school. I liked that the doctor not only respected me and my concerns and feelings, but I also appreciated that he was very understanding of my desire to become a nurse. He helped me understand that my condition would not prevent me from living a normal life and achieving my degree.

Weeks later, I underwent anesthesia to be diagnosed. My surgeon told me after that I needed more surgeries to treat my newly discovered health issue. I had a rectovaginal fistula and he informed me that I had had it for at least five years. He also stated there was no exact reason why I had developed a fistula. While this made complete sense looking back at all my symptoms, I still cried when I heard this report. Suddenly, all the missing pieces were finally fitting together.

I had a diagnosis, but this was not the end of my battle. I underwent six separate surgeries all while maintaining honors in nursing school. The most recent was my ostomy surgery. During this time, I dropped down to only taking one class and had been unable to work a career-related job because of my health needs. The hours of studying were long and strenuous, but I fought through recovery one day at a time. Hauling heavy books and running from class to class were no longer a part of my day. Healing was just as important as learning, and I managed to balance the two. I often studied while soaking in the bathtub, as this was the doctor’s order to help the healing process.

During the increased workload of nursing school, I met two very caring friends, Laura and Bert, who helped me along the way. They were there for me when things got rough and made sure I didn’t fall behind in school during my health obstacles. I asked for health-related accommodations and was able to have Laura and Bert with me in every class and during clinical. This was a way to be sure that I would have the support and care if necessary. As a new ostomate, I knew anything can happen spontaneously. Having caring and trusting friends nearby encouraged me to relax about my condition and focus on my studies.

More Frustration, but Still Focused

Throughout my path, I was somewhat saddened to learn that ostomy surgery was a necessity. I understood that my fistula was not healing with the multiple surgeries that were performed, so the ostomy became a part of something I learned to accept. Even now my focus is to heal, rather than stress the need to reverse my ostomy before my fistula has completely healed. I was informed by my colorectal surgeon that rushing the process could result in the same challenges I had when I started my journey.

Jennifer with her close friend Jenell, left, whom she met at a UOAA Affiliated Support Group Meeting in Illinois.

Finding Friendship and Support through the Flaws

During my hospital stay for my ostomy surgery, my Wound, Ostomy and Continence (WOC) Nurse informed me that the Loyola University Medical Center held monthly ostomy support group meetings (One of 315 UOAA Affiliated Support Groups in the U.S.) and that she thought it would be beneficial for me to attend. She mentioned a young woman around my age who had recently had surgery. I thought it couldn’t hurt to show up.

I hoped to gain tips on care, products and living life differently with what seemed to be a flawed digestive system. I had already researched some of this online and in magazines, but I decided that more information could not hurt. Three weeks after major surgery, I walked through the door of the meeting room, still in pain and feeling a bit awkward about the whole thing. I sat down behind the youngest person in the room. She turned around and immediately greeted me with a friendly smile and introduced herself and her mom to me. She is in her late 20’s, her name is Jenell, and her stoma’s name is Piglet. Suddenly, I didn’t feel so nervous when Jenell asked why I came to the meeting. When I told her my story she said that it was unlike any story she had heard before. We spent the rest of the meeting talking about all things ostomy. We exchanged telephone numbers after the meeting and quickly became good friends.

Jenell eventually shared her own story with me and the story of naming her ostomy. Most ostomates feel naming their stoma helps them accept the transition of having an ostomy. With Jenell’s encouragement, I named my stoma “Rosita,” symbolizing that an ostomy reminds me of a rose. Jenell has helped me in so many ways by encouraging me about my health condition; she gave me confidence and showed me that even though my body changed, it doesn’t mean I changed as a person. She also taught me how to handle certain situations. For example, because of our invisible illnesses, we feel the need to educate the public on unseen chronic physical conditions. Together, the four of us – myself and Jenell and our stomas, Piglet and Rosita – make quite a team. We have a lot to be concerned about, but we also have a great future and much to be thankful for. We’ll face more challenges, but we’ll do it together.

My own experiences have helped me decide that I want to become a WOC Nurse and tell others with the same condition that they also can live a normal life. I want to help others with the transition of becoming an ostomate. I want others to know that they can follow their dreams, share their successes, lead by example, and show care from their experiences. I decorated my graduation cap to celebrate my decision and I included Rosita in my design to recognize that I have successfully overcome my challenges, and to show my ostomy is part of me and part of my future.

I am ecstatic to be sending out applications to be hired as a registered nurse because I never thought this day would come due to all my uncertain health issues. However, I will have to wait until my next surgery and through recovery. I know I’ll get there eventually because my challenges will not stop my dream!

Appreciation

All in all, I am very grateful for those I have in my life who have supported me: for Jenell for her friendship, for my surgeon with his knowledge and talents, for the WOC nurse that helped me get through my transition of being an ostomate, for my instructors for teaching me so well, for my classmates Laura and Bert and all the support they gave me, for Rosita for being so accommodating of my ongoing issues, and most importantly for my mother to whom I attribute my success. She encouraged my caring nature, has kept me strong and motivated, has lifted me when my spirits were low, and she is the reason I have fought so hard to become a registered nurse!

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.

Positive Change is Happening!

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2019 Advocacy Accomplishments We Can All be Proud of

By UOAA Advocacy Manager Jeanine Gleba

I pride myself on being an “action person” and nothing gives me greater satisfaction than checking those boxes and crossing off items on my lists to-do (daily, short-term, long-term etc) both in my personal life and professionally. So I get super excited at year-end when I can reflect and look back at all that UOAA has accomplished in our advocacy efforts!  I’m happy to report 2019 was not an exception. Although many priorities are ongoing and I can’t actually cross them off my list, I remind myself that Rome was not built in a day and realize to make a major impact in the health care world it could take many years. The important thing for all of us to remember is that we are making progress and positive change is happening.

UOAA Ostomy Advocates at the DDNC

Ostomy advocates at the DDNC Public Policy Forum in March.

Each year UOAA’s Advocacy Committee establishes annual goals based on the strategies outlined in UOAA’s Advocacy Agenda. We have learned that the needs of the ostomy community are fluid and more often than not, I find each year that new priorities must get added to the list. These goals and priorities keep us organized and ensure we stay focused on where we can have the most effect given our organization’s limited resources.

In no particular order and not an all-inclusive list below will give you an idea of what we worked on and accomplished in 2019. This does not include Ostomy Awareness Day efforts as they were previously shared: 

Completed the “Expect More: Take Control of Your Healthcare” self-advocacy toolkit with checklists – All of the parts and resources are online here. In 2019 there were 579 downloads of the resources and the ostomy supply checklist had the most downloads at 247.

Best in Practice Research Project Launched – The purpose of this research project is to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and demonstrate best in practice standard guidelines for ostomy care. In 2019 we collected the data, in 2020 we will conduct the data analysis phase, publish results and ideally find ways to use the results to improve patient outcomes.

Centers for Medicare and Medicaid Services (CMS) Ostomy Supply Policy 

  • Conducted an online survey earlier and analyzed results to better understand the issue of obtaining greater than allowable quantities for those that have a medical necessity such as a high output stoma
  • Submitted comments and recommendations from UOAA to CMS for the Simplifying Documentation Initiative (SDI) and the Patients Over Paperwork Initiative to reduce burden as it relates to the ostomy supply process. 
  • We have a subcommittee comprised of medical professionals, manufacturer representatives, and patient advocates who will continue this effort in 2020.

Legislative Priorities 

  • Advocated on the Disability Integration Act (DIA), Removing Colorectal Screening Barriers, Ostomy Awareness Day, Step Therapy, and Competitive Bidding Program
  • Released two new position statements for DIA and Opioids
  • Supported the DDNC Step Therapy National Day of Advocacy

Additional Efforts to Expand Patient Bill of Rights

  • Safe n Simple is now including the PBOR Wallet Card in new ostomy patient starter kits and Byram Healthcare now includes it in their ostomy educational booklet

Further Advocacy Outreach and Collaborations 

  • Upfront with Ostomies Column: As a result of contacting the editor of the Wound Management Prevention journal UOAA now has its own column in this clinician journal.  5 articles were published in 2019
  • UOAA was invited by the CMS Quality organization to submit a new idea for the 2021 Improvement Activities used in the Merit-based Incentive Payment System. Ex-committee Member Barbara Dale and I submitted for consideration two modifications to existing improvement activities that focuses on re-evaluation of ostomy care and supplies
  • Access and Care Coalition: Successfully continued to ensure Congress refrains from expanding the Medicare Competitive Bidding program to include ostomy and urological supplies 
  • 3172 people downloaded the TSA Travel Communication Card
  • Started efforts with OEM of LAX airport in CA to make restroom improvements for ostomy accessibility; created UOAA guidelines for United States ostomy restroom accommodations 
  • Between myself and members of the Advocacy Committee we authored or contributed to 18 magazine and UOAA e-newsletter articles on advocacy-related topics

Looking forward to greater achievements in 2020!

Justin Mirigliani’s Story

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Ostomy Strong and Giving Back on the Ice

By Ed Pfueller, UOAA Communications and Outreach Manager

In 2015 things were looking up for Justin Mirigliani. An active father of two, his ulcerative colitis symptoms were in remission. In his free time, he was an avid weightlifter and loved skiing and playing ice hockey.

He probably could have been forgiven if he wanted to skip his yearly colonoscopy, it was his 10th test since his ulcerative colitis diagnosis in 2002. But his doctor made sure he was scheduled, and he went in. It was a decision that likely saved his life. He discovered he had to have his entire large intestine removed due to a severe precancerous condition called high grade dysplasia. A video before his ileostomy surgery shows the raw feelings of this life-changing event and the video below shows his journey to healing and thriving.

Since that surgery on September 24, 2015, he has vowed to do all he can to help others who suffer with IBD and to help remove the stigma attached to those who have a “bag.” Justin is determined to show, through his active lifestyle, that nothing is impossible with an ostomy. Justin has given himself an epic challenge to prove this point. He has continued weightlifting and is trying to become the first ostomate to bench press 405 lbs. You can see this journey documented on his YouTube channel The Strongest Ostomate in the World. (Parastomal hernias are a risk for all ostomates so check with your doctor before starting any exercise regimen.)

Though Justin had developed a small bulge around his stoma very early on, he is careful to complete lifts that do not add excessive internal pressure, like deadlifts or squats. He wears a binder to help support the area around his stoma anytime he lifts anything remotely heavy. In the past four years of heavy bench pressing, shoulder pressing, and bicep work, there has been no change in the bulge around his stoma. So as not to neglect his legs, Justin runs flights of stairs with a weighted vest. As he says, “It’s just a matter of improvising.”

Justin has also given back to the IBD community by creating Checkmates Charitable Association. Checkmates’ main event is a yearly hockey game with NHL alumni. Recently Justin decided to expand his charity’s mission to also benefit the ostomy community. “The UOAA Conference in Philadelphia has definitely opened my heart to wanting to include UOAA and do anything I can to help our community,” Justin says.

In 2020 Checkmates is expanding its mission into Canada by sponsoring a “Disease Without Borders” International NHL Celebrity Hockey tournament with its first game this February in Toronto, Ontario. The winner of that tournament will come down to the U.S. to play the Checkmates team at the Philadelphia Flyers Skate Zone in Voorhees, New Jersey in April. Justin’s ultimate goal is to use this year as the template for NHL Celebrity Hockey games and tournaments throughout cities in the US and Canada.

Justin says of the fundraiser, “We will never stop striving to make the lives of those with IBD and those living with an ostomy the best lives they can be!”

Like any other nonprofit organization, Checkmates is always happy for helping hands. If you are interested in volunteering with Checkmates please contact Justin. Checkmates is also looking for hockey players who want to play on the same ice with NHL stars. Players must be 18 or older, be able to ice skate forward and backward and be able to shoot a hockey puck.

Justin is grateful to his doctors, who saved his life, he and his family created this PSA to warn everyone to get their colonoscopies. Please share it. It just may save a life!

Until IBD has been eradicated and every ostomate is properly cared for, Justin promises that Checkmates will be on the front lines fighting for these communities to the best of its abilities. Justin believes “No matter what, your illness or ostomy will not hold you back!”

 

 

Get Your Groove On!

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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!