They are all superheroes in our book. They come in on their day off for us, they heal us, they teach us, they empower us, they advocate for us, they volunteer for us, they learn for us, they run our support groups, they make us laugh and help dry our tears.

They are also a central part of UOAA’s 7th National Conference and our advocacy program. Every year we ask our UOAA Affiliated Support Groups to nominate an exemplary nurse for UOAA’s WOC Nurse of the Year Award.

Charlotte Popovich, center, was awarded last year’s WOC Nurse of The Year.

April 14-20, 2019 marks WOC Nurse Appreciation Week hosted by the Wound, Ostomy and Continence Nurses Society™ (WOCN®). This year WOCN® Society is celebrating and empowering WOC nurses to discover the superhero that lives within them.

This celebration is a fitting time for us to begin our challenge of selecting a winner in a group that are all heroes. We know many still hide in the shadows and their good deeds remain unrecognized.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses.

Shirley Abraham
Ostomy Support Group at Baylor University Medical Center in Texas

Shirley has been passionately involved in the Baylor University Medical Center (BUMC) Ostomy Support Group since its inception. As a member of the founding committee, she was instrumental in inaugurating the new and much needed support group in October 2018. BUMC is a large hospital with a substantial number of colorectal and urological surgery patients, and the need for such a support group was very evident. She works closely with the surgeons to provide a smooth discharge and post-operative recovery transition. She also works in Baylor’s out-patient ostomy clinic, serving patients with peristomal problems or pouching issues.

“She is well respected as an expert in her field, dedicated to her field and passionate about the quality of care that she delivers. She is a true example of a highly dedicated RN and skilled WOC nurse”

Janice Beitz
Philadelphia Ostomy Association

For close to 20 years Janice has been asking the Philadelphia Ostomy Association to periodically come speak to her WOC nursing class. We have never appeared at her class where the students haven’t thanked us for our time and loved the opportunity to speak to people with ostomies. The trickledown effect of being invited by Janice to speak at her WOC nursing class is that her students graduate and the ones that stay local to this area call us to visit their patients.

“Her strongest attribute would have to be her commitment to her student’s, UOAA as a support system that provides Information to patients and a Patient Visiting Service where ostomates visit patients pre and post op to assist in the rehabilitation of new ostomates in getting on with their lives by showing them they can still work, dress in stylish clothes, and basically live a relatively normal life after surgery.”

Erin Donohoe
Ileostomy Association of New York, Inc.

Erin distributes monthly meeting flyers to clients and family members who may benefit from our meetings, and posts meeting notices in a prominent location on the hospital floor. She participates in Board of Directors meetings and is on Ileostomy Association of New York’s (IANY’s) medical advisory board. Erin is available for contact by e-mail or phone if urgent situation/question arises. She has been willing to provide her services to home-bound ostomates and has been flexible regarding her fees for home visits. She has often provided these services gratis for patients in need.

“Erin has exhibited a high degree of professionalism and commitment befitting a representative of the WOC nurse profession. She is a strong advocate for IANY and believes in the positive impact that mutual support groups can confer. Since our BOD and general meetings are held on Sunday afternoons, she willingly sacrifices precious personal time to be present. She consistently shows compassion, understanding to persons with ostomies and their significant others who approach her for help and assistance.

Diana Gallagher
North West Arkansas Ostomy Support Group

Diana started the group over ten years ago. It started out in a small room with about eight patients. It is because of her compassion, ability to educate and availability to both patients and doctors that our group has grown to a base of about 140 patients. We have patients that still come after ten years knowing they can always learn something new. Diana has extended our group hours for patients in need of education and information. Diana has a very prominent presence, and doctors and surgeons across the area rely on her expertise.

“Diana has a patients wellbeing in mind both physically and mentally. She is a constant in our ostomy community that is willing to help any ostomy patient. She is an advocate for patients!” 

Joy Hooper
Ostomy 2-1-1 inc. and South Georgia Ostomy Association

As the only support group in South Georgia, Joy will make home visits to help patients in rural areas as well as bigger cities. She will teach patients everything about caring for their ostomy. She opened an office where patients can get one-on-one care. She helps others find solutions to their problems. Joy will call and talk to any doctor or nurse interested in ostomy care. She travels around the country to teach ostomy care to other nurses.

“Joy Hooper is the most dedicted ostomy nurse. She invented an anatomical apron for helping patients understand their ostomy. She has so much knowledge about ostomy and will teach anyone who wants to know. Joy is a wonderful ostomy nurse and someone I can call on anytime day or night.”  

“Her LIFE is focused around not just our single ASG, but the entire Ostomy community. I would have to say that every attribute and commitment that Joy provides are CRUCIAL for not only our group, but to every other group in the ostomy WORLD.”

Charles Sloan
Boulder County Ostomy Support Group of Colorado

We have meetings in two different hospitals and Charles attends meetings in both facilities, even those that take place in the evening after he is off work. He makes time at the ostomy clinic for support group patients even when they have a full schedule. Charles developed a program for high school students and an in-house education program for the staff at his hospital to educate them in best practices at the bedside of ostomy patients. Charles is passionate about ostomies and designed WOC pins for those who complete his in-house ostomies 101 class. He also designed fun trading cards used for training programs.

“Our group takes a great deal of comfort knowing that Charles is always there for us. If there is an emergency we all know how to contact him and he will provide support.”

Angela Natale-Ryan, Stephanie D’Andrea, Ronnie Funke, Pam Hughes
Union County Ostomy Support Group of New Jersey

This group of four dedicated nurses interface with new members of the support group, and educates medical professionals on the importance of our visiting program. They have established our first Ostomy Center and attend meetings. From the moment I was marked my WOC nurse has been beside me and encouraged me to attend my first support group. In four years we have grown to a UOAA chapter with many members.

Our four WOC nurses are such a cohesive and dependable group of women who concur, coordinate and ensure that all ostomates are treated completely, they are determined to offer the best to all of us. They are problem solvers who never give up until all patients are comfortable. Ostomates are in the best hands possible with the four of them, who act as one!

United Ostomy Associations of America’s (UOAA) 2019 WOC Nurse of the Year Award will be presented during its 7th National Conference in Philadelphia this August.

Support the Disability Integration Act

By Jeanine Gleba UOAA Advocacy Manager

    Sue Mueller, BSN, CWOCN

Does an ostomy qualify as a disability? This is a question that UOAA receives on occasion. You are living with an ostomy, you feel pride that you are independent with your ostomy care, that you are able to problem solve the glitches that arise, you have resumed your former activities and tried a few new ones…life is good.  So it’s confusing when you hear someone tell you that you qualify under the Americans with Disabilities Act (ADA) as having a disability. Perhaps you can walk and talk and see and hear and are independent with your care. You may envision a disabled person as someone who needs help with care, uses a wheelchair or a walker; someone obviously disabled. Well, elimination of waste is a major body function and your elimination of waste has changed; in fact you need to wear a prosthetic device (ostomy appliance) to manage this change. You have a record of an impairment of a major body function, therefore you are protected by the provisions of the ADA. You do not have a visible disability, and not all disabilities are visible. (Please be aware that the term disabled means different things in different systems i.e. in Social Security disabled means unable to work.)

Fast forward 15-20-30 years, you have aged and might be experiencing any number of the challenges that aging brings….combine that with ostomy care and you may find yourself in a whole new world trying to get your needs met and survive in the environment of your choice. That’s when you will be especially glad that you are protected by civil and disability rights legislation such as the Rehabilitation Act of 1973, the ADA, Olmstead vs LS, case law and provisions of the Affordable Care Act. Basically, what these legal documents establish is the expectation that people living with disabilities have the same opportunities as people without disabilities; to live and work and participate in their communities, that the same services and supports that are provided in institutions are provided in the community. Many improvements have been accomplished but the institutional bias in service provision has not been eliminated and the services needed to support non-institutional living have not been created.  The Disability Integration Act (DIA) has been proposed in both the US House and Senate as a measure to end institutional bias and promote services in the community and extend the principles established in previous legislation.

The act is bipartisan legislation that ensures people with disabilities have a federally protected right to live and receive services in their own homes or in the setting of their choosing. The DIA further secures our Constitutionally protected right to liberty by preventing disabled people from being forced into costly institutional settings by unnecessary government regulations.

In addition, the DIA assures the full integration of disabled people in the community by ensuring that people with an ostomy and other conditions are able to exercise real choice in where they wish to receive attendant services, assistance with health-related tasks such as “maintenance and use of a stable ostomy” or other services that enable a person with a disability to live in the community such as in an assisted living facility and lead an independent life.

Our patient bill of rights advocacy efforts have illustrated the gap in expectations and the reality of care.  An issue facing the ostomy community especially as they age is that most assisted living facilities (ALF) across our country will not admit someone with an ostomy or in the rare cases where they do, the ALF no longer needs to retain them once the individual can no longer perform self-care with emptying or changing their pouch. Once the door to assisted living is closed the only option is placement in a long-term care facility/nursing home. Assisted Living homes and nursing homes are radically different environments.

We believe that emptying a pouch is a simple activity of daily living that should fall under toileting assistance/hygiene.  When the issues with care at assisted living facilities result in an ostomate requiring long term care in an institution, when that is not their choice it is a civil rights issue and is exactly what the DIA is trying to address. UOAA supports and advocates for this landmark legislation and encourages the ostomy community to take action here to help us garner legislator support and pass this in 2019.

UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Jody Scardillo DNP RN ANP-BC CWOCN
Albany Medical Center- Albany, NY

The Issue

It’s amazing what can happen when a little effort is made.  In April of 2018, the insurer NY Medicaid decreased the allowable quantity for certain ostomy barriers from ten to eight per month.  This included extended wear barriers with and without built- in convexity. This affected many of our patients with ileostomies and urostomies, who required extended wear barriers and /or convexity due to the nature of the stoma or the output.

Most of these patients in my practice require appliance changes every three days even after optimizing the products and accessories they use. The other issue that came up with this is that the ostomy supplier would not break open a box and provide a partial amount, so any patient that used a product that was packaged in multiples of five only received 5 per month instead of the eight that they were approved for. The vendors in my practice were also not able to send alternating amounts.  Dispensing one box on one given month alternating with two boxes the next month was not an option. This would leave an ostomate with only five barriers per month. In reality, the ostomate had enough barriers for half of the month. The coverage for the pouches was twenty per month, which led to a mismatch of products with no solution.

The Success Story

We contacted NY Medicaid by phone and email and collaborated with them so they understood the issues, and the meaning of this for the ostomate.  As clinicians, we all knew this was going to severely impact skin condition and quality of life. After reviewing the information provided, New York Medicaid restored the monthly allowable back to ten barriers.

Lessons Learned

There were several important lessons I learned as a clinician as a result of this situation:

  • Be sure to provide the proper information with a question or request. For example, as a clinician I might describe a product “1-¾ inch cut to fit extended wear convex barrier”. However, the language used by insurers and supply vendors to describe a product is called the HCPCS code (Healthcare Common Procedure Coding System). A4409 is the HCPCS code for a commonly used extended wear convex barrier.
  • This particular insurer was very open to suggestion and willing to listen.  They reversed an important decision when they realized it was not in the best interest of the person with an ostomy. It can never hurt to advocate for yourself or your patient.  The worst thing that can happen is that a situation may not be changed.
  • Under NY Medicaid regulations for beneficiaries who are in need of quantities above the maximum allowable limits they can submit a “prior approval request”. Include a letter of medical necessity from ostomy care provider for the need over the limit.

So, what to do if you have problems with your ostomy supplies?  Reach out to your insurer, your ostomy care provider and your supplier to see what can be done to find a solution together.  You never know unless you try!

To share your advocacy success contact advocacy@ostomy.org

Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

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

Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

Left, Ellyn Mantell with UOAA Advocacy Manager Jeanine Gleba, right, outside New Jersey Senator Cory Booker’s office.

UOAA Representative – Ellyn Mantell

There is so much frustration and dissatisfaction around the government right now, that it is easy to forget all of the wonderful things that continue to be done behind the scenes, and I want to share with you my experience in that regard. On Sunday, March 3, 2019, my wonderful support guy, husband, Bruce, and I traveled to Washington, DC to attend the annual Digestive Disease National Coalition meeting. I was asked to be a Patient Advocate accompanying Jeanine Gleba, Advocacy Manager for United Ostomy Associations of America. She and I have a special bond, since she lives in New Jersey and has attended support groups’ meetings with me, and we both have the same goal, which is increasing awareness and getting the most for ostomates.

After meeting key personnel and greeting other attendees on Sunday night, I felt empowered to be part of Team 5 the next day, when we would go to “the Hill!” Monday morning, following a warming breakfast (which we needed since it was windy and oh, so cold walking up toward the Capitol) and a basic logistics session, we headed to the Hart Building, not actually on “the Hill” but very exciting, nonetheless. I saw the offices of Senators about whom I had read or seen on television…a rare opportunity to be in the “Place Where It Happens”!

Our team was awesome and so inspiring! In addition to Jeanine and my presentation (visual aids are great, and my emergency kit pouch was a surefire way for the Legislative Aides to get the point: the necessity for funding for supplies, etc. as well as not being denied benefits for pre-existing conditions) we had two other Patient Advocates. Carolyn was invited by Megan Glynn, Manager of National Programs for the American Liver Foundation, and she is alive because of a living donor liver transplant. This is quite amazing, since the liver is composed of two lobes. One lobe can be transplanted and both donor and donor recipient’s livers will regenerate. It is truly amazing! Carolyn was making a request her life-saving  medications, which cost thousands monthly, may bankrupt a family trying to keep alive the patient they love…a terrible choice to have to make. Generics and off label usage may make a huge difference, but funding is always the issue.

Cheryl Velba then spoke with the Legislative Aides about her Short Bowel Syndrome, she is a Rare Disease Advocate. Surviving the removal of most of her colon and small intestine, she is one of the few to survive such a severe twisting of her bowel. This life-threatening occurrence, and the damage done to her body includes not only digestive issues but ocular ones, as well. She is asking for certain medications, again, costing thousands a month, be switched for generics or off-label usage. We all urged the aides to impress upon the Senators for whom they worked to limit out-of-pocket costs as well as curb current and future payer tactics to shift costs onto the patient.

The Digestive Disease National Coalition stands for Research of Digestive Diseases; Patient Access to Affordable, Quality Health Care; and Prevention and Awareness of Digestive Diseases. Digestive Diseases are chronic and, in many cases, debilitating and disabling. I was deeply honored to be able to bring awareness to the young aides who may not have known anything about our issues before yesterday, but when we were done, had to have learned another slice of life, the struggles of many…and hopefully, they will impress that upon our NJ legislators, Senator Menendez and Senator Booker.

 

UOAA Representative – Michael Quear

I recently attended the Digestive Disease National Coalition Annual Spring Public Policy Forum as a representative for UOAA. Actually, I participated in a group that was meeting with Congressional staff. My group was made up of Pennsylvania residents; so we met with staff of the PA Senate delegations and selected House Members staff. In my group I was the only person with an ostomy, but I certainly had experience with a digestive disease!

I was diagnosed with ulcerative colitis when I was 14; 4 years later I had my surgery – a total colectomy with a permanent ileostomy when I was 18. It’s hard to believe that was 42 years ago. Plus, I certainly knew my audience. I’d had the privilege of serving as professional staff for 20 years on the Committee on Science Space and Technology in the US House of Representatives.

I know these are busy folks and that we would likely have only 20, at best 30 minutes of their time. (We actually only had 15 minutes!) So I thought what are the points I would like them to remember about life for an ostomate and what impacts what they do by allocating funding and how healthcare policy impacts people like us.

First off, show and tell. When you say the word colostomy most people think a bag filled with et cetera. An ileostomy draws a blank stare. So I took along the appliance I wear, so they could feel it, see exactly what it looks like and how it works.  Using my thumb I explained my stoma. I also explained that despite the revolutionary advances in medical diagnostic equipment, prosthetics and drugs that in ostomy products there have not been many major breakthroughs in ostomy solutions, but research funding targeted for ostomy products could change this.

I also talked about the stigma that ostomates often feel.  In general, an ostomy is something some in the public feel is only slightly worse than death.  I was 19 when I heard someone say, “I’d rather be dead than wear a bag….” And I’ve heard similar remarks occasionally thru the years. As it is national Colorectal Cancer Awareness Month, I mentioned that people who suspected they had a serious gut issue were afraid to be seen by a doctor because of this stigma. I recommended their boss use his public platform to remind people this is a procedure that saves lives, not ruins them.

Finally, the cost.  I told them the cost of my appliance and that some people need to change it daily, others every 4-5 days. Regardless, over the course of a year costs add up. Therefore, it is important that insurance and government programs cover these costs. When Congress fiddles with health care funding and/or policy they need to think about people like me with serious gut disease in general.

Was it a long day? Yes!  Was it useful – I hope so!

But I think it is one that the staff will remember.

About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.

You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!

After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.

Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”

 

For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.

Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I

Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”

booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.

 

I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…

“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.

–Robert Harrion

Follow me on Facebook, Instagram, & YouTube

www.RobertHarrion.com

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Support Made the Difference Before Reversal

I was halfway through a 10-hour drive home to Lancaster County PA from Dayton, where I’d just finished a Relay For Life, when I felt the first pains in my lower left side. Thinking they were just cramps, I shrugged them off and kept driving. The cramps persisted though, so I popped a few Naproxen and tried to put my mind on something else.

Eventually I decided to stop at a hotel and sleep it off, then worry about it later. Whatever it was, I couldn’t do anything about it now, I’d call my doctor when I got home. A hospital “just happened” to be next to the hotel I chose, after bypassing 4 others.

When I checked in, though, I was so cramped up that I couldn’t even stand straight. I was sweating, weak, and had a bout of diarrhea. I had always been pretty healthy, so I had no frame of reference for what was going on with me. I figured I had a flu bug or maybe a cyst. I tried eating, taking a shower, more Naproxen, but nothing helped.

Finally at 1:23 am I felt a compulsion to go to the ER. I had no idea what was going on with me but I knew I needed to be checked out. After being checked in, I had a CT scan. The surgeon came back to me himself and announced that I had a ruptured colon and that I was going to have to go into emergency surgery. He could either sew it up or I’d have to have a colostomy.

I had never had issues with my colon and thought colostomies were for “old people”. Alone, still 4 hours from home, I had no clue what I was in for.

I woke up hours later in a drugged daze. The surgeon came in to say that he’d had to do the colostomy. “The hole was so big I could put my thumb through it!” he said in amazement. I looked down at my left side to see this new, strange thing called a colostomy bag attached to me. How was I going to live with this?

At home, I connected with several different sources that I couldn’t have done without. A home health care nurse who showed me how to use and live with the bag, a WOC nurse who educated me, an online support group with fellow ostomates, who were always there for tips or to hear me vent.

I thought my life would be suppressed. But I was still able to swim, jog, bike, go out to eat, travel, and all the others things I did before.

I was fortunate to have a reversal three months later. I recovered quickly with no further health issues. I have a scar, but it reminds me to be thankful for the surgeon, nurses, and support group people who helped me along the way-I could not have done it without them.

Learn more about Jennifer’s story before and after her emergency surgery on her blog.

I was told if I didn’t have the surgery when I did, my Crohn’s disease would have killed me. Surgery made a drastic change in my life for the better. Now I will be around for my wife and kids.

I had a promising career in the United States Army, but that all quickly changed. In 2014 I was deployed to Afghanistan. During my deployment, I noticed something wasn’t right and started having a lot of stomach pains and other symptoms. At the time I didn’t think much about it. I was focused on the mission during my deployment. I always put my soldier’s needs before mine. So nine months went by and I came home in 2015. Still having these symptoms I was asked to do another deployment to Iraq. I took the deployment for another nine months. Towards the end of my deployment, I was in a lot of pain. Once I returned back home I finally saw a medical doctor. After several tests, I was diagnosed with Crohn’s disease. Later I started treatments, but nothing was working. As a result, I was medically discharged from the military in August 2016; whereupon, I continued my treatments back home in Dayton, Ohio. In December 2016, I was still in so much pain that I went to the emergency room for testing. When the doctor came back, he told me I needed to have emergency surgery. That December I had my first surgery and I went home with a permanent ostomy. It was a difficult transition back to civilian life and even more challenging now adapting to life with an ostomy.

I really struggled in the beginning. I felt alone trying to figure things out. I went from being in the best shape of my life from being in the military to gaining weight and being depressed. I even shut my family out. I didn’t think support would benefit me because in my mind they were civilians and not prior military service members. One day I woke up and realized this doesn’t have to be this way and turned it around. I did reach out to a few support groups on Facebook looking for advice and how people deal with having an ostomy pouch. I realized it wasn’t about the military anymore, but all of the support people out there are willing to give. My wife is my biggest supporter!

I’ve read so many articles about Crohn’s and ostomy pouches, but I haven’t really felt like anyone was affected in the military as much. Now I want to share my story. I reached out to UOAA because I hope to advocate for all military and their families that struggle through this. I want to be the one who is there for a fellow service member that when they find out they have this disease that they are not alone and even though you loved and enjoyed the military, there’s still a bright future outside of the military.

Even after two years I still struggle with the thought of having a “bag” and some pain, but I am able to stay active now and recently went back to doing what I love – getting fit, and being outdoors and hunting and fishing. I feel having an ostomy was a slight setback, but it was not the end. There are far worse things in life. So if me having to do this to save my life and be able to enjoy it, then I find that as my motivation to keep going. Most importantly, I’m no longer out with the constant bathroom trips and horrible pain that left me not being able to love life and spend time with my wife and kids.