Bladder cancer and urostomy surgery do not stop Annemarie from living her best life.

I am a bag lady. I am highly educated and employed, yet carry a bag wherever I go. I don’t leave home without it. Because of bladder cancer, I have a urostomy. Like many other women, it took some time for my diagnosis. At 57, many of the symptoms I experienced were attributed to my age: menopause, UTIs, kidney stones, fibroids, etc. Thanks to the fibroids, I was scheduled for an ultrasound. It was my gynecologist who found the bladder tumor. She referred me to a urologist. In fact, she insisted. Her office called to make sure I followed through. I met that week with a local urologist. He did a scope. I saw him look at the nurse, concern written on both their faces. He started talking about surgery and apologizing for the diagnosis. In my naivete’, I had gone to the appointment by myself. I don’t remember him even saying the words, but I had bladder cancer.

Scans and a transurethral resection of a bladder tumor (TURBT) were scheduled for the following week. Usually an outpatient procedure, I was in the hospital for 4 days due to heavy bleeding after the TURBT. The tumor was large and the doctor couldn’t get it all but he thought it had penetrated the muscle. Unfortunately, the pathology was inconclusive so he did another TURBT the following week. The outcomes were exactly the same so we both decided my best chances were for a second opinion at Dana-Farber Cancer Institute in Boston. Throughout our discussions, he explained what my future might entail. It looked likely that they were going to have to remove the bladder and I would either have a new “bladder” or a bag. Quite honestly, I had no idea what it entailed, but I was horrified.

Dana-Farber is an amazing place. I had a whole team in place: a medical oncologist, an oncology urologist, a nephrologist, among others. The plan was an MRI to confirm the tumor’s pathology, a nephrostomy tube, chemotherapy and, if the cancer had not spread, a radical cystectomy. If it had spread, I would not need surgery but would be eligible for palliative care. Who would have thought surgery is the best case scenario. Due to claustrophobia, and despite anesthesia and Ativan, I moved so the MRI was inconclusive. I needed another TURBT. Thanks to my new amazing surgeon, the tumor was removed and the passage to my kidney was cleared. The pathology of the tumor showed no spread to the muscle and an ultrasound showed no more kidney hydronephrosis. Even better, I would no longer require chemotherapy. I did try immunotherapy with BCG but it did not work. The cancer was aggressive so we had to treat it aggressively. My radical cystectomy was scheduled for January 25, 2019.

It took me a long time to get there. I even asked what would happen if I did not receive the surgery. I would be dead in a year.

Wow, that was sobering. Because of the proximity of the tumor, I did not qualify for a neobladder. I would have to have a urostomy. Every time I talked about it, or even thought about it, I cried. I felt like I was going to be a freak. I offered my husband a divorce if he wanted one. I was devastated and frightened. I have learned that fear of the unknown and our imaginations are far worse than the reality. While so much of what had happened to me was out of my control, I did have control over one thing: HOW I handled everything. I decided knowledge was power. I was fortunate. My hospital had a class for urostomy candidates. For the first time, I was able to see an actual urostomy pouch. I was given hands-on instruction on how to change a bag. I met ostomy nurses (the best people in the world!) who would be helping me.

I decided I would be the one to handle my changes, right from the start. I would take control.

My surgery lasted 7 hours. I needed a transfusion but things went well otherwise. The surgery was not easy. People have described it as feeling like you were hit by a bus. I never really had any pain. It was easily managed with Tylenol. However, I was so weak. I eventually needed an iron transfusion. The one thing I wish I had gotten for my return home was a shower chair. Showers were the worst for me. It took me two months to feel more like myself and another month before I felt ready to return to work. I also cannot say enough about getting a good ostomy nurse. I have been described as a delicate flower (surprising to those who know me). I have very sensitive skin. The nurse was a Godsend to me in trying to manage all of my skin issues. After my visiting nurse visits ended, I continued to see the ostomy nurses at the hospital where I had my surgery. It took a year but, through trial and error, I finally have gotten a handle on things.

I had a few leaks. They were usually caused by user error. They were not the huge floods I expected. Honestly, none of this was as awful as I expected. So many people said this would be my “new normal”. I can’t stand that term. I call it my new reality. There isn’t anything normal about having a urostomy. However, it is very doable. I now wear two-piece bathing suits. I didn’t before. I am wearing the same clothes as I did before. I can kayak, hike, ride my bike, swim for hours, anything I did before. I was here for the birth of my first grandchild. I am back to work, a job that I love. I am not shy about talking about my bag to others. It is not a secret. In fact, I am kind of proud of it. I am alive and life is good.

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!

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.

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!”

 

 

By Steven Berit

I fainted the first time I lost a tooth. Not from the actual pain of the removal, but from the sight of the blood dripping from my mouth. I also fainted during a health talk in the sixth grade. Most people would call me “squeamish,” and I would agree. The sight of blood or even the mention of anything related to the human body can easily send me into a spiral of emotions typically resulting in me waking up in the nurse’s office. So, you can imagine my apprehension when the doctors first suggested the idea of me receiving a colectomy.

Hi, I’m Steven Berit. I’m eighteen years old and I am a senior in high school. I live in Pennsylvania with my mom, my dad, and my sister when she is home from college. I live a pretty “normal” life. I go to school, play football, and hang out with friends just like anyone else my age would do. The only difference between me and everyone else is that I have an ostomy bag and they don’t. This small detail isn’t even noticeable for most, but at first, it certainly was noticeable to me.

I was sixteen when I was first diagnosed with ulcerative colitis. The next year and a half would be full of trial and error, and with each passing day the errors stuck out more and more. Mesalamine, Remicade, Entyvio, and Xeljanz were just a few of the never-ending drugs that I was prescribed. The only thing that seemed to be working was steroids, but both my doctors and my acne-ridden face agreed that this was not a permanent solution. Finally, in July of 2019 while in my latest stint on the 5th floor of the Children’s Hospital of Philadelphia, I made the decision to say good-bye to my very inflamed, friend- my colon.

I don’t remember much of the first night following the surgery, but the next couple of days stick out in my mind vividly. Well, I mean I clearly remember the restless nights. As for the actual stoma itself, this took me some time before I had my first encounter with it eye-to-eye or eye-to-intestine in this case. The second night was one of the worst nights of my life. I guess the anesthesia had worn off and with it came the regret. Yes, that second night I thought I made the biggest mistake of my life. There I laid in a hospital bed way too small for my eighteen-year-old frame contemplating if I could ever recover from this setback in my life.

Well, the sun rose and with it time for my first bag change. I remember screaming- a lot. They told me that the stoma couldn’t feel pain, but what they failed to mention was that I could still feel the pain of my hair ripping off my body as they pulled the adhesive off my skin. Trust me your average eighteen-year-old boy has plenty of hair to go around, but your eighteen-year-old boy that has been steroids for the last year and change has more hair than one would openly like to admit. But, as the bag came off, I got my first glimpse of my future in the form of a beautiful, red stump known as my stoma.

The next couple of weeks would come and go with relatively little struggle, but as summer came to an end my biggest challenge approached- going to school. I tried every possible combination of tucking my bag into my pants until I came to the realization that no one cared. Either people didn’t take notice of the bag of stool attached to my body or they too were busy and caught up with their own lives to care about what secret I kept hidden behind my shirt. It was my first time since being diagnosed with UC where I felt “normal” at school. Which was odd because to most this was the least “normal” I had ever been.

No, my journey with my ostomy was not one I would describe as love at first sight. But it has grown on me over time. Yes, I still need my parents help to change my bag every three days, but the once shrieks of pain have now subsided into murmurs. I now go to school every day like a new person. I no longer have fears of finding where the nearest bathroom is or if I am going to be able to take a test for thirty minutes without a wave of urgency coming over me forcing me to drop everything and make a mad dash to the nearest restroom. Instead, most days go by without any thoughts of UC or stomas crossing my mind.

As I come closer every day to my reversal surgery in December, I begin to wonder if I would be able to live with this bag for the rest of my life, and after some thought, I honestly believe I would be able to. UC has taught me over the years that I can overcome anything and the ostomy bag was just the latest thing I had to overcome. If I can go from fainting over a loose tooth to conquering a disease that once bullied me then I can overcome any challenges that may come my way. The once terrifying ostomy bag has become a cherished friend of mine who I will never forget even when it is gone. I cried when I had my first tooth removed. I may also cry when I have my ostomy removed, but I think these tears will fall for a completely different reason.

Colonel Justin Blum with Introduction by retired Navy Veteran Douglas R. Stocks

I’ve known Colonel Justin Blum for almost ten years and have learned much of his story over those years. For UOAA’s observance of Veterans Day, I asked Justin to share his story in greater depth. It is typical for us to remember our Veterans as heroes, but we don’t think or even imagine that they also may have been through a life-altering illness or traumatic event resulting in an ostomy. My wife Joanna (an ostomate) and I had the opportunity to spend an evening with Justin and his wife Leah after the Durham Run for Resilience 5K this past October. I was reminded that evening of the hero that Justin truly is, and felt it was time that others knew the story of this humble and well-respected man.

In 1993, when Justin was a Major on active duty in the US Army, he underwent surgery for an ileostomy due to ulcerative colitis (UC) which had progressed to colon cancer. Justin’s ostomy did not slow him down and he became one of the most respected officers in the state of South Carolina and the only member of the Army Junior Reserve Officer Training Corps (JROTC) cadre with an ostomy.  Justin has had a highly successful career and life of public service. Justin has faced the gamut of living with a chronic illness, to receiving a devastating diagnosis, to ostomy surgery, to survival and finally triumph.

Here is his story:

In the Fall of 1971, I was a freshman at Morris Harvey College in Charleston, West Virginia. I was feeling the stress of being away from home for the first time in my life and of getting adjusted to college life.  I began noticing blood in the toilet after every bowel movement. I told my parents, who took me to a gastroenterologist during my Thanksgiving vacation at home. The gastroenterologist performed a sigmoidoscopy and determined that I had proctitis, an inflammation of the rectum and anus.

I transferred to Rider University in Trenton, NJ, for my second freshman semester to be closer to home, a decision made easier by the fact that Rider had an excellent ROTC program. I suffered with the proctitis and colitis for the next four years with only a prescription for the anti-inflammatory drug Azulfidine to combat the disease. In June of 1975, I underwent my physical exam at Fort Dix, NJ, to go into active duty in the Army. In the course of the physical, the Army doctor performed a rectal exam, and asked, “Do you know what you have?”  I acknowledged that I had colitis. In one of those strange twists of fate, my passion for serving the Army outweighed the colitis so the examining doctor wrote “Fit for Duty”.

For the next twenty years I hid my ulcerative colitis from the Army.  On days that I had attacks, I would explain that I was feeling bad due to having had too much scotch the night before.  Stationed in South Korea in 1976/1977, all too often upon returning to the camp motor pool after patrolling along the DMZ, I would have such severe diarrhea that I could not make it to the latrine and instead would jump into the nearest garbage bin since it was the closest “facility” I could find. I spent the next 13 years seeing civilian gastroenterologists for the colitis and who continued to prescribe Azulfidine. Finally, in 1990, my colitis was so bad I sought help at Eisenhower Army Hospital at Fort Gordan, Georgia where I began seeing Major Armstrong, a gastroenterologist, who informed me that due to my heath condition, resulting from severe flare-ups of UC, he strongly recommended surgery for an ileostomy.  My reaction, not unusual I am sure for people receiving this news, was an immediate, “No! Unless I have one foot in the grave with my back against the wall, I refuse to have this surgery resulting in my living with an ostomy bag!” This was twenty years after my first diagnosis of UC in November 1971. However, just a few years later after a colonoscopy, Major Armstrong told me that I needed ostomy surgery as soon as possible.

On February 28, 1993, I had surgery to remove my entire colon due to UC, which had advanced to colon cancer, and I was left with an ileostomy. As was not uncommon in those days, and even sadly still happens today, I had only one session with the ostomy nurse on how to manage my ostomy.  The day after surgery, I developed a leak in my appliance and called for the nurse, but no one responded.  I looked at myself in the latrine mirror with my ostomy bag hanging down, and I thought I looked like the Elephant Man.  After 10 days I was discharged but did not have access to an ostomy nurse or assistance of any kind except for follow up appointments three hours away at Eisenhower Hospital. I wanted to continue to serve on active duty, so I put my mind toward getting in the best physical condition possible. I started walking 9 miles a day, passed my physical fitness test, and was able to stay on active duty. In 1995 I was promoted to Lieutenant Colonel and in 1996 retired from active duty and transferred to reserve status, continuing to work for the US Army as a high school JROTC Instructor.

Life as an ostomate was fine except that I was experiencing pain from irritation of the skin around my stoma and I did not know of any ostomy nurses in the local hospitals and I didn’t know where to turn for help except for the still fledgling Internet of 1996. I was able to find a Crohn’s/Colitis chatroom on AOL (America Online). In that chatroom I was able to talk with numerous people who had either an ileostomy or a colostomy. On one occasion, an experienced ostomate was able to talk me through the steps to alleviate an intestinal blockage saving me a trip to the emergency room.  I was able to find an ostomy support group at the local hospital, but because they met at 10:00 AM and I was working an hour away, I was unable to attend their meetings. Despite all I learned from online resources I was still plagued with skin irritation around my stoma site which continued for the next 10 plus years.

Life took a turn for the better when in 2010, I received a letter from the nurse who ran the local ostomy support group, which talked about (the now former) Great Comebacks Program; a national honor program started by ostomate and former point kicker for the San Diego Chargers, Rolf Benirschke. This program recognized people who had lived an exemplary and inspiring life while living with an ostomy.  In 2011 I was the recipient of the Tony Snow Public Service Award, a subgroup of the Great Comebacks Program which emphasizes those in uniform living with an ostomy.

However, it was not the award that changed things for me, it was my ongoing communication with the ostomy nurses that I met through this program who eventually solved the problem of the skin irritation and pain that I had struggled with for so many years.

I have accomplished more in my life as an ostomate as a result of the care I have been able to obtain since my story was brought to the national level. If not for my quality of life-improving dramatically as a result of this assistance, these accomplishments would not have become a reality.  I owe so much to three WOC nurses: Donna Sellers, Joanna Burgess, and Joy Hooper. I met them through the Great Comebacks program, and they have always offered their help readily.  I have now been free from pain for the past nine years.

There are many who do not have the same easy access to professionals that I have had. I am very fortunate! That is why I believe everyone should seek out or become involved with a community of ostomates either through an online support group or hospital-based support group if possible. All ostomates should help other ostomates achieve the quality of life made possible by their life-saving surgery. Having UC and then colon cancer at age 40 meant years of pain and discomfort in my life. Ostomy surgery gave me a new life. Before I retired from teaching, I used my experience with my ostomy to motivate my JROTC cadets, inspiring them to never give up on anything and reminding them they can accomplish anything they set their mind to.  I no longer see myself as the Elephant Man, but as a man with a beautiful wife, supportive children and two amazing grandchildren.  Life is good!

The UOAA thanks you for your service Colonel Justin Blum and honors your accomplishments!

  • 1995 – Promoted to Lieutenant Colonel
  • 1996 – Retired from active duty; continued to work for the US Army as an Army JROTC instructor in the United States Army Cadet Command.
  • 2003-Named the United States Army JROTC Senior Instructor of the year
  • 2009 – Promoted to Colonel, in the South Carolina State Guard
  • 2010- Named Volunteer of the Year for the State of South Carolina
  • 2011- Named US Army JROTC Senior Instructor of the Year for the second time.
  • 2011 – Named the Tony Snow recipient for Public Service
  • 2019 – Lawson R. McElroy Award for Engaged Learning

 

My View: By Connie Confer

Most of the nation is gearing up for Halloween, with all of its tricks and treats. But as a lesbian who wears an ostomy bag, this month also includes some more personal holidays worth celebrating, especially if we want people to feel more accepted and safe.

Did you know that Oct. 5 was Ostomy Awareness Day? Just like the more established National Coming Out Day (Oct. 11), it brings an opportunity for people to celebrate their differences and their courage as they announce, perhaps with some trepidation, that they live with certain realities. They hope their family and friends will not shy away. They hope their bosses will not fire them.

That fear is completely rational. Just this week the U.S. Supreme Court heard oral arguments in cases that could indeed decide whether someone can be fired for being gay or transgender. We will have to wait for months to hear their decision and how it will impact our laws. But in the meantime, I want to advocate for acceptance, not alienation. I want to argue that open communication creates community and reduces stigma for people in my own life circumstances.

Yes, it is tricky to navigate the reactions of the world, and it takes some courage. But the treat continues to be that we are not alone. The LGBTQ community is indeed a family, with gay pride parades in every major city, and support groups for people who want to come out to their friends or family, or for parents and other family members who want to support a gay or transgender young person navigate in an unfamiliar world.

Connie Confer, left, at the California General Assembly where she has been key to getting proclamations to recognize Ostomy Awareness Day.

Similarly, my local Southern California, Inland Empire Ostomy Association, offers support and practical advice for people who find themselves facing surgery for an ostomy pouch. As do over 300 other United Ostomy Associations of America (UOAA) affiliated support and Information groups nationwide.

No wonder people worry when they hear they will be among the 100,000 people in the United States who will get an ostomy this year. The treatment for diseases such as cancer or Crohn’s almost sounds worse than the disease. People wear a pouch attached to the abdomen that holds urine or feces that must be emptied and changed regularly. It can be embarrassing to talk about it, but just the same, we must.

That surgery is life-saving. I am living proof. And the routine of wearing the pouch seems quite easy and normal to me now. I find that I can talk about it with people close to me, and that I do not feel any stigma. For others who want to get to a place where an ostomy pouch feels routine, you should consider attending a UOAA affiliated support group near you.

There is no reason to suffer in silence and there is every reason to be fully and proudly yourself, no matter what your reality. And if you are not impacted by these specific things, make sure you are supportive to friends and family who are.

Life lived honestly can be a real treat.

Carolyn “Connie” Confer served as the assistant city attorney for Riverside, California and has advocated for the LGBTQ community for decades. She was there in September when Assemblyman Jose Medina declared Oct. 5 as Ostomy Awareness Day in California in honor of the work of the Inland Empire Ostomy Association.

Living 10 steps from death’s door can take an emotional toll. My name is Makeda Armorer-Wade and I am an inspirational life coach and best-selling author. In July 2010, I received my first ostomy and January 2016, I received my second. While both surgeries were difficult physically as well as emotionally; my first was more difficult than the second, because I was not included in the decision in any way. It was an emergency surgery following a resection surgery a week earlier. The decision was made during a follow-up test and they were actually drawing on my belly in the elevator on my way up to the room. It landed me in the ICU and 10 steps from death’s door.

The second ostomy surgery was a decision that I made based on the recommendation from my GYN and surgeon. I was so debilitated that this was my only option. So although it was very difficult, it was less traumatic than the first, because I was involved in the decision and I thought I knew what I could expect.

I went to the United Ostomy Associations of America (UOAA) and read everything that I could. I went to what I call, “Ostomy School.” I did my best to connect with patients who were having a similar experience. Because I have lived with a Crohn’s disease diagnosis from the age of 16; I’ve understood the necessity to research and learn all that I can to manage my condition. Crohn’s disease was not a common diagnosis at the time I was diagnosed, and giving up wasn’t an option for me. Connecting with others and gaining knowledge was freeing. The more I learned, the more comfortable I became with living and embracing life with my new friend (ostomy) Rosebutt Buttercup. Yes, I named her. I was able to support new ostomates by participating in the monthly Mt. Sinai post-surgical support group.

Having my second ostomy has given me the freedom to go back to work, take care of my family, swim, cycle, attend social gatherings, participate in community service and travel. Sometimes listening to the despair of my fellow ostomates and experiencing my own despair at times, for lack of knowledge is what spurred me into action. I wanted to be an example, that there is still life to be lived after an ostomy. Our mindset is important. Where our mind goes, the body follows. Life is what we make of it.

As an author, coach and public speaker. I use my platform to share my story, as evidence that life can be all the things that you are open to making it. I am advocating for sponsorship to release a course that will be available for a small fee, to anyone who has an ostomy, considering getting one or a caretaker of someone who has one.

The biggest positive about living with an ostomy is understanding that without it, I would not be here. The first one was reversed, but as I moved toward having my second one I knew enough and it was the only way. I made the decision to move forward and I am not looking back. I had to embrace that I was enough and the new possibilities for my life were endless.

I realized that as long as I follow my P.L.A.N.(c), I have fewer challenges. I Prepare by anticipating each scenario; I Let go of Shame for all of the things that I can’t always do; I Ask for help when needed; and I Never give up no matter what. Repetition breeds mastery.

So, I share with others that having an ostomy is just an alternative way of going to the bathroom. We all have to go the bathroom. But now, I have the benefit of having more control over when I go. An ostomy is life-saving. An ostomy is an opportunity to really live your best life on purpose.

And while you may not feel that way in the beginning. It does get better. My advice as an experienced ostomate, is to get as much information about your surgery prior to getting it, if time allows. Speak to people who are successfully living with and managing their life with their ostomy. Read, watch videos and ask as many questions as you may have. And then work your P.L.A.N.(c). Be inspired, Be encouraged, Be hopeful. I believe in you. The possibilities are endless.

I  had been increasingly struggling with symptoms for over two years with medical personnel brushing me off because I did not fit the norms for bladder cancer and didn’t check off enough risk factors for it. By the time of diagnosis, at the age of forty, I was perpetually in pain and discomfort, I was periodically urinating blood clots and I was unable to sleep through the night due to the pain and frequent urination. I felt like I spent most of my time and energy running to the restroom. I even had one ED physician laugh at me and assume that I didn’t know my own body well enough to know whether I was urinating blood clots or having issues with my menstruation cycle.

I had my urostomy surgery on September 23, 2016 after receiving a bladder cancer diagnosis on August 12, 2016. I had Stage IV Bladder Cancer with a T4, muscle-invasive tumor.

Having my surgery has allowed me to get back to my own life and start living again…mostly without pain. I’m able to sleep through the night again and I do not spend most of my time running to the restroom.

I have been working in a pediatric GI office since 2012, so not only was I aware of ostomies and that a person could live a long, productive, great-quality life with an ostomy, I also had my very own personal ostomy support crew. My coworkers are amazing and have been so supportive through everything…several nurses have even given me ostomy/stoma care tips and helped me address potential concerns. One nurse, a true-blue friend, even helped me change my bag a couple of times when I first had my surgery and was in rehab!

Finding Support

During my chemo treatments, I first started looking at online resources and started reaching out. I remembered that my WOCN told me there was an active local ostomy support group. It wasn’t until November 2017 that I was physically able to make any meetings in person.

Encountering the Greater Cincinnati Ostomy Association GCOA was the best connection I could have made post-everything. I originally tried to connect with people through the American Cancer Society and the Cancer Support Community, but bladder cancer is sort of a red-headed stepchild of the cancer community. It affects many on a number of levels, but NO ONE talks about. Not everyone diagnosed with bladder cancer has to go through the extreme treatment measures I did, so there are varying experiences within the diagnosis. However, going to the local cancer-focused groups was very frustrating and discouraging for me as most of the people I met there were breast cancer survivors whose experiences did not have any similarities to my own. There were no local bladder cancer-specific groups in my area and there still are not.

When I finally connected with UOAA/GCOA, I found more understanding, empathy, compassion, and comradery in the first meeting than I had in several with the cancer organizations. People definitely made the difference. Online support was okay, but even there I was sometimes frustrated with the set up because it too easily turns into a forum for sharing memes and complaining about their situations. There’s not a lot of educational conversations or intellectual discussions about what I was experiencing, which was something I was craving.

Becoming Active Again

I am still experiencing neuropathy in my feet and ankles as a side effect of the chemo treatments that I will probably deal with for life and I am still working on getting my strength and energy back, but I am gradually reclaiming everything that I did before. I fell shortly after my last chemo treatment and spent about 3 weeks in the hospital/rehab before getting discharged on a Friday and returning to work the following Monday because I had exhausted all of my medical leave and it was either return to work or lose my job. I did not want to deal with the stress of job hunting after all I had been through and going on disability indefinitely was a luxury that I could not afford, so I returned to work completely bald and using a walker. The first day back, I could barely make it from the front door to my office chair. Still, returning to work was one of the best things for me because it forced me to have to rebuild my strength and be active.

I now work 40+ hours a week again with a team I love supporting and I volunteer with the GCOA and Hughes High School, my alma mater, as much as I can. I took over the presidency of the GCOA back in January. I still live alone on the 2nd floor of my quaint, inner-city, 2-bedroom apartment. I enjoy spending time with friends and extended family. Last May, I rented a car and went on a road trip by myself to Columbus, OH to participate in the BCAN Walk to End Bladder Cancer and catch up with some amazing people that I have in my life. I will be taking a plane and train trip in August to attend the UOAA National Conference and go on vacation in upstate New York afterward. I am finally able to start walking and being a bit more active again and have started trying to figure out how to do some of the higher energy things I used to do (like dancing and workout videos) despite the neuropathy, which sometimes makes it hard for me to coordinate my feet. It’s all a process though and I try to take it one day at a time. I’m hoping to be able to take a trip to Argentina in 2020…your attitude and determination are what makes the difference and I’m determined to accomplish things that I have always wanted to do despite the obstacles I’ve had in my past.

Raising Awareness

Both bladder cancer and urostomies are extremely rare and there are huge discrepancies in diagnosis and treatment of bladder cancer, especially with women and minorities. It has been really important to me to bring awareness to both issues because I truly believe that lives can not only be improved, but saved by advocating, educating and raising awareness of bladder cancer and ostomies. So many people immediately think that having your bladder or part of your colon is going to end life as they know it. In part, they are correct, but not in the way that most people think at first thought. People with ostomies can live long, productive lives and be amazing leaders in their communities…just like anyone else. Just because you will always have a medical condition that requires the use of medical equipment does not mean that your life is over. It is different, that’s all. We’re all different though, having an ostomy just makes you extra special.

When my urology oncology surgeon told me that he wanted to remove my bladder (along with various other abdominal parts), I didn’t hesitate at all and said, “Okay. So what’s next?” I knew that my life would be over if I didn’t get an ostomy and I knew that my life would not be over with an ostomy. It was one of the easiest medical decisions I have ever made. He could have asked me if I wanted a cup of coffee it was that easy. That doesn’t mean that I didn’t have struggles and the journey wasn’t a challenge because I did and it was, but I am grateful that I had a choice of life or death and that I was able to choose life so I could get on with mine. Raising awareness for bladder cancer and ostomy awareness means that I could help someone make that life-saving decision that much more quickly and that they would be able to move onto healing and gratitude that much more quickly, instead of being bitter, pissed and depressed over losing a non-essential piece of themselves.

I have raised money, made social media posts, written articles, blog, had discussions, and encouraged others to go outside of their comfort zone to seek support. Additionally, I fairly quickly began being more involved with my local ASG and am committed to thinking outside the box and expanding opportunities to reach people where they are at and, hopefully, encouraging to become/remain involved and to share their own stories.

Staying Positive

I’m alive! I’m not in constant pain and discomfort. I can sleep through the night and not be up every 10 minutes to go the bathroom. I don’t have to do that “gotta go” dance while standing in line for the ladies’ room. I can hook up to my Foley for long trips or binge-watching and not have to move for hours. My bladder does not interrupt me in the middle of the best scenes when I go to the theater. I’m able to concentrate again. I can relieve myself while standing up or writing my name in the snow (gotta see a little humor in the situation)!

My advice is to just focus on living your life. The closer you get to doing everything you did before, the more positive the picture of life with an ostomy becomes. Yes, you can live without those parts and you can still be an active person. Your life and your dreams are still unlimited…it just might take a little extra preparation and planning, depending on your personal diagnosis and situation, but real life and real dreams take hard work, no matter who you are! You have to work for the things in life that you want anyway…no matter who you are or what your circumstance is, but the harder you have to work for something, the more worthwhile, valuable and meaningful it is to you. Only you can make the decision on how meaningful you want your journey to be though.

Overcoming Challenges

Most of my challenges are from my cancer treatments and not from having an ostomy. Still, bending and twisting are sometimes challenges. I do have a hernia that I way too quickly achieved by sneezing and, although it does not typically bother me, it is something to keep in consideration when I am trying new movements or lifting heavier objects. I have neuropathy and slight hearing loss as side effects of my chemo treatments and those are more annoying and challenging than my ostomy issues. Every once in a while, I have a leak, but I generally carry at least a few supplies with me so I just try to catch it quickly, change and move on. I’m really fortunate to have amazing friends, family & coworkers who are really understanding and supportive when these things happen and they don’t bat an eye when I need to deal with these things. Overall, I’ve pretty much learned to have a new definition of “normal” and I take things day by day and slow down when I need to and, most of all, when new things come up, I TRY instead of just giving in.

Advice for those who may need ostomy surgery?

Don’t think twice! No, it isn’t always easy and it isn’t always an easy choice. Sometimes, it’s all very hard. Yes, life will be different, but, in the long run, it’ll be worth it and at least you will still have a life to live.  If you give the ostomy and yourself a chance, having an ostomy will ultimately give you a better quality of life. Also, don’t be afraid to reach out to others who have had similar experiences…that’s how you get through the challenging moments, days, and weeks. Also, I feel like it is critical to share your own story in some way, shape or form. Not only does it help others get through their situations, but it is a great way for you to heal and get through your own story. Sharing your story is a way of honoring yourself and allowing you to shed light on your own strength because many times you don’t realize just how strong you are. Martin Luther King, Jr said, “Our lives begin to end the day we become silent about things that matter.” Keeping your story bottled up inside and not even sharing it with the people you love is detrimental to your journey. You matter and so does your story, so share it.

Making a Difference

Last year, I hosted a virtual Run for Resilience Ostomy 5k walk locally and I had 6 humans and a canine share in a beautiful day at a local park. It was great to share my story with people who hadn’t heard about it before while walking. Prior to my own surgery, my team at work and I would wear blue and green on Ostomy Awareness Day in support of the patients and families we care for.

I have grown up participating in similar events and have always found them inspiring and empowering. This year, we hope to have even more participation and invite everyone to meet at a group meal afterward. I will be attending my first UOAA National Conference in August and I’m excited to make new connections and learn more information that will enable me to assist others in getting back into life after receiving an ostomy. I would like to see others get involved in these events because it gives them connections, information, support and empowerment. There is no substitute for making connections in real life with people who have tackled the same problems, fought similar battles, and, most of all, WON. There is strength in numbers and we are all stronger together.

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

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