Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy
If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.
That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.
Somewhere along the way, I found my strength. I dealt with major emotional and physical changes faster than I could even process. I had to adapt to a whole new way of life and a whole new way of looking at myself.
Somewhere along the way, I found my strength.
These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.
Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.
I literally stared death in the eye and won. It is hard to even write that today.
Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet. Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy. But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy. The decision to have a permanent ileostomy was the best choice I ever made.
This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.
I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again. I want to help as many people with IBD and facing the possibility of an ostomy as I can. I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.
“God said to me, I am going to show you pain. And then you are going to help other people who are in pain because you understand it” (Lady Gaga).
Outdoor Adventure Does Not Stop with an Ostomy and IBD.
Hi my name’s Charlotte!
I grew up in New Hampshire as the youngest of three sisters. I had a pretty normal childhood and was raised by a wonderfully supportive family who fostered in me a sense of independence and love of adventure. In 2007, at the age of 17, I was diagnosed with ulcerative colitis. That diagnosis later changed to Crohn’s disease, and it changed my life forever.
My IBD progressed rather quickly and about nine months after my original diagnosis, I had my colon removed, a temporary ostomy, and a j-pouch created. I lived with my j-pouch for five years, and those were some of the toughest years of my life. Despite a failing jpouch, pooping my pants every day, and a variety of other debilitating symptoms, I was determined to continue living my life. I was able to graduate from high school, bike across the country while in college, and complete my academic coursework as an Occupational Therapy student on time (despite dropping out of college in my Sophomore year because of my Crohn’s disease). I was not going to let Crohn’s get in my way.
In 2013 after agonizing over the thought of ostomy surgery (I had been adamant for years that I would not have an ostomy), I finally told my surgeon I was ready, and underwent surgery for a permanent ileostomy. I felt prepared for ostomy surgery this time around because I went to local support groups in Boston to learn more about living life with an ostomy. I also found a surgeon who understood me and what I wanted out of life. My ostomy changed my life again, and this time for the better. I’ve had 3 stoma revisions and my Crohn’s does pop up every now and then, but I have so much more freedom in my life with my ostomy.
In 2014, after graduating with my Master’s in Occupational Therapy, I was able to move to Alaska to take my life back and pursue a life of outdoor adventure (and work). I started sharing more about my ostomy with my community which increased my confidence. I worked to establish a collaborative medical team, including my surgeon, GI doc, and physical therapist/pelvic floor therapist who have helped me take control over my life and continue an active lifestyle. I’m a passionate OT working in Anchorage. I enjoy running, biking, skiing, climbing, hiking, backpacking, camping, and spending any time outdoors. My family, boyfriend, and friends are my greatest sources of support, and they inspire me to live my life fully.
In addition to my passion for the outdoors and exercise, I enjoy empowering others to learn more about themselves and how to thrive with an ostomy. When I first had my ostomy, there weren’t many resources out there, but I stumbled upon the Ostomy Outdoors blog which provided helpful resources for my outdoor journey with my ostomy. That’s in part why I created my blog, backcountryostomy.com, to support other ostomates returning to active lifestyles after ostomy surgery. And I recently started my business, Restorative Ostomy Solutions to empower Occupational and Physical Therapists to feel more confident working with ostomy patients.
Through rehabing myself from six major abdominal surgeries, I have learned what it takes to pick myself up after each setback and continue on my life journey. Because life if so much more than my diagnosis and my ostomy!
A Second Opinion Leads to a Life-Changing Ostomy
In the spring of 2014, I had completed another colonoscopy for my ulcerative colitis. It was my fifteenth colonoscopy in twelve years and many prescriptions of drugs later to curtail the bleeding of the polyps in my intestine.
I had a very productive career and life with a CPA practice for 34 years. In Grapevine, Texas I served on the school board and as a city council member, and was named “Citizen of the Year.” But bleeding and bathrooms were getting on my nerves, so I called the Mayo Clinic in Rochester, Minnesota, unbeknownst to my gastro doctor. I told them that I wanted another opinion.
After four days of extensive tests, discussions, colonoscopy, the doctors at Mayo concluded that the polyps were entirely too large to remove by minor surgery without bigger risks, and that removal of my large intestine was recommended. Cancer was discussed at length including risks and possibilities with large polyps and various medical unknowns involving my circumstances.
My large intestine was removed January 4, 2015. The surgery was in my home town and I had a great ostomy nurse that taught me all of the intricacies of the ostomy pouch and supplies. I returned to retirement life again here in the Mountains of Texas where it is cool in the summer and we return to Grapevine for the winter where we had our careers.
I am 76 today and walk with my dog 3 to 10 miles each day. I play golf anytime I can. I am very active in my small town and I play the organ at our church each Sunday. I am not overweight and enjoy eating most anything. I find it necessary to chew every piece of food very well. I avoid nuts, corn, kale, popcorn, and tough fruit skins.
I love life and I am so happy for the decisions I made.
Living with an Ostomy and IBD led her to become an Unexpected Beauty Queen and Advocate
Hi Everyone! My name is Robin Brown, I’m a 40-year-old wife, momma & farm girl. I also happen to have an ostomy and the title of Mrs. Washington World America!
My relationship with my guts has been a long battle….even as a child I suffered from severe ulcerative colitis symptoms but I wasn’t officially diagnosed until I had my first bowel resection at age 21 as result from an infection following an appendectomy. I lost my marriage and some guts but I finally got some answers…or so I thought. The next ten years were a rollercoaster of medications, treatments, alternative therapy and surgeries(15 to be exact.)
I was miserable. My family was miserable. But, I’d had enough and didn’t want any more treatments. Soon I was back in the hospital and one doctor reviewed ALL my info and said he knew exactly how to fix me…OK, just one more surgery then. Well, he was right…he fixed me!! I was no longer having incontinence issues, I could eat again (personalized diet plan) and was feeling great compared to the previous ten years. End of story right?!
WRONG! Less than a year after surgery I was in an accident where I was crushed between our off-road truck and the back wall of our garage. It was a literal and figurative blow that nearly took my life. I had holes in my large intestine, holes in my small intestine, a shattered pelvis, four broken bones in my back and an aortic aneurysm. I had to undergo countless operations, hours of physical therapy and I was even put into a coma while doctors worked fixing one piece at a time.
After everything began to heal I realized how broken I was. After the accident, I lost myself. I had worked as a medical assistant for years and loved working in healthcare. Now that was gone. I was finally a mother after trying for nearly ten years. Now I couldn’t even lift my two-year-old son for a hug. I took great pride in being a partner to my husband. Now I needed him to help me sit on the toilet. I was stressed and depressed. My UC symptoms worsened by the day and now that I had shortened guts it caused a multitude of other problems like rectal prolapse (twice!) which led me to finally agree to get my colostomy pouch. I cried, a lot.
Being home, then in and out of the hospital, and no longer able to have a 9-5 job I decided to start a little online business selling skincare and cosmetics. Not really to make money but just to feel like I was doing SOMETHING! I had to get out of this funk. I was hiding. Hiding from my husband, even though he had an easier time accepting things than I did. Hiding from my reflection- because every time I saw myself I felt depressed and sad. I was hiding from the world by wearing bulky sweatshirts in the middle of summer so no one would see my bag. Then one day in my online makeup group I shared a bit of my story. The response was amazing and beautiful and that’s when things began to shift. One afternoon I received a message from an old friend suggesting I compete in a Mrs. Beauty pageant since the focus is so much on what you do to inspire rather than just what you look like. Me? In a pageant? Probably not. Then a few weeks later the same suggestion from another. Ok universe…I hear you. I decided to apply for the Mrs. Washington America pageant and was quickly named Mrs. Mason County.
Great! What in the heck did I sign up for? Before surgery, I swore off swimsuits and anything tightly fitted. Now, not only will I wear a swimsuit on stage but I’m going to ask to be JUDGED?!?! What on earth was I thinking? Now, in addition to volunteering and fundraising, each queen must have a platform. Something they want to bring awareness to and are passionate about. The obvious choice for me was gastrointestinal disease and ostomy awareness and education, but that’s not the most beautiful platform and can make people uncomfortable. As quickly as the idea came, fear and doubt began to creep in and I promptly began thinking of other ideas.
At my first pageant event, a holiday party to meet all the other queens, we were introduced to a designer that would be custom designing an opening number dress for each of us! As I chatted with the designer I quietly mentioned I had a colostomy bag and could we design something to hide it as much as possible because I wanted to feel beautiful. A short while later I bumped into a sister queen at the elevators. She introduced herself and wanted to know if she could ask a personal question…of course, I said! She asked if she overheard my conversation correctly that I had a colostomy bag? Yes, yes I do! “Really?!? Where, I don’t see it?” She continued, “are you happy you made that choice? What’s the hardest part? Does it hurt?” A million questions rolled off her tongue at once and then she shared her struggles with GI disease and the fact that an ostomy has come up in her doctor’s appointments and she was terrified and thought life would be over¬– until she met me! I knew right then, I had the right platform and that by sharing my story I could help others in ways I never dreamed.
At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.
In the months leading up to the pageant, I began volunteering at hospitals and schools, sharing about differences and acceptance. I had the opportunity to be a speaker with a major medical company to share my ostomy journey and provide input to how they can better serve our community. I even went live on Facebook and showed my bag to the world!
In a few short months, I became empowered and proud of my body and my spirit again. I walked the stage in a swimsuit like I was a supermodel, rocked a gorgeous FITTED gown with grace, and with a smile heard myself say the word bowels, as it proudly rang through the pageant auditorium.
Guess what? I didn’t win. I did not even place in the top 10. I went to the coronation party with a stage smile and promptly excused myself with my best friend by my side. She knew I needed to cry. As we reached the bottom of the grand staircase I could feel the tears of disappointment welling, and her hand grasping tighter to my arm letting me know I just had to keep it together for a few more seconds. At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.
Soon after, I applied to represent Washington at the Ms. World International pageant after a few weeks and committee meetings later, I was selected! I am now Mrs. Washington World America and I couldn’t be more proud to represent my state and the ostomy community at the upcoming pageant.
I never thought I’d have an ostomy. I never dreamed this farm girl would be a beauty queen. I never imagined my trials would become my triumph and my story of hope. Throughout my life, many have attempted comfort me with the words “everything happens for a reason.” This honestly just kept me waiting for a moment of clarity and answers but that moment never came. I found no reason! I think sometimes bad things just happen and it’s up to us to give them meaning and purpose. For me this is it. Sharing my story, my triumphs, my tragedies. All in the hope that it can be a light for someone stumbling in the darkness.
Robin Brown will be this year’s Ostomy Awareness Day Champion for UOAA. Check out all the ways to get involved and join with her on Saturday, October 3, 2020.
Imagine being your 15-year-old self again. What did that feel like? Young, carefree, happy…healthy?
For me, I felt all of those things every day. I played the clarinet, got good grades, was athletic from running track, active in school/church clubs and had amazing family/friends. What more could I want as a teenager?
I didn’t want for anything until one day I no longer felt like my healthy self anymore and all I wanted was to be healthy again. This is when my life changed forever…
It was November of 2012, at the time I had just moved to Los Angeles, California with my mother from Maryland. I was very excited to move and support my mom with her new job opportunity. She is like my best friend and nurturer at the same time. It was always just her and I growing up, no siblings. California’s scenery was colorful and vibrant. All I could picture were the great things my future would bring living there.
That picture flipped upside down within weeks. I could feel my stomach expressing to me that it didn’t like the chicken nuggets or the pepperoni pizza, I was feeding it. Sharp pains that felt like knives were sticking me each time I would eat, pushed me to never want to pick up another piece of food again. No over-the-counter medicine could relieve the amount of pain I would feel. Sick little me sat helplessly with my mother by my side in Ronald Regan UCLA Medical Center’s emergency room waiting to be admitted and seen by a doctor. I thought to myself, “What was happening to me? I don’t understand.”
I couldn’t understand. I was just fine a month ago. My mom was just as confused as I was. The doctors weren’t transparent enough with my diagnosis and had trouble figuring out what was the actual problem. After a few tests, I was diagnosed with ulcerative colitis/Crohn’s disease. This diagnosis soon changed once the gastrointestinal team at UCLA Medical Center (UCLAMC) realized it was strictly my colon that was being affected which changed my diagnosis to ulcerative colitis.
I had no idea what ulcerative colitis was nor had I ever heard of it before. My current gastroenterologist, Dr. Ziring, asked who in my family had the disease but I wasn’t familiar with anyone. My father, mother, and grandparents didn’t have any trace of ulcerative colitis. It was concluded that the change in climate and stress could have taken a toll on my body to make me flare-up. I couldn’t eat certain foods anymore. I was prescribed all types of medication that I had never seen and forced to take pills that were pretty huge to swallow.
Nearly one month spent in the hospital, my routine had changed. I would wake up take my meds first, eat (liquid-solid foods), watch TV, read a book, walk around to gain my strength and repeat at least three times a day. Once I was released, I remember being so happy to be a normal person again. That feeling went away when my mom took me to buy nutritional drinks to restore my protein, vitamins, and minerals. I couldn’t fit into any of my clothes from the amount of weight I lost and my toned body went away. Dr. Ziring told me that I would live with this forever because there is no cure, which I didn’t want to believe. All I could do was try to understand and educate why my body reacted the way it did to certain foods, activities and mental stability.
Fast forward to 2013 where I moved back to Maryland with my mother, I was enrolled back in my previous high school and actively seeing, pediatric gastroenterologist, Dr. Oliva-Hemker at John Hopkin’s hospital. I couldn’t do any of the previous extracurricular activities I participated in and could only workout at a minimal intensity due to my low blood counts. Throughout the school year, I experienced many flare-ups and trial/error with different medications. Some hospitalizations were longer than others and overtime I became stricter with my diet to prevent excessive flare-ups. My high school graduation wasn’t the best time for me because I was experiencing a severe flare-up that interfered with my ability to keep food down. I missed my senior week summer trip to recover in the hospital and get back to feeling better again.
After graduating from high school, I switched gastroenterologists since I was considered an adult. Dr. Rosen had been my mom’s gastroenterologist for years so the transition was smooth. I was stabilized on Humira and Prednisone throughout my community college career. By then, my mother and I had moved to Atlanta where the weather was nicer. I think the weather, being around family/friends and less stress I experienced helped my flare-ups calm down living in Atlanta. I truly enjoyed my time there and experiencing college at Georgia State University, as well as working part-time.
Once I completed my first two years of college and received my associate’s degree, I transferred to Syracuse University (SU) to achieve my bachelor’s degree. This was one of the hardest transitions of my life moving from the South to the cold North. My third year of college and first-year being away at a university led to my body experiencing an extreme transition which resulted in three severe flare-ups. My mother left Atlanta and moved back to Maryland to be closer to me because she was terrified of how sick I was getting. Each time I flared up, I flew home to get the treatment from Dr. Rosen. Suddenly, Humira no longer worked for my body anymore and Prednisone wasn’t healthy for me to keep using to reduce inflammation due to its side effects.
During senior year, my 3-week hospitalization interfered with my academics and involvement in extracurricular activities. At this time, I was advised to try Entyvio and I was tired of trying new medications. The only way I could have some quality of life was to remove my colon. My mom was concerned for me, but I couldn’t let her concerns steer my thinking I knew I had to do this for me if I wanted to make it to graduation.
In November of 2017, I set an appointment with Dr. Colvin in Northern Virginia to discuss my surgery. I had the surgery during my college winter break, spent Christmas in the hospital, recovered and returned back to school. At the time, I didn’t know how I was going to apply to graduate school at the S.I. Newhouse School of Communications at SU but I did that during my recovery period. It took a lot of exercise, mental motivation, empathy and support from family, my best friends, mentors and peers at school. With amazing grace and good spirits, I got accepted into the public relations program at the S.I. Newhouse School of Communications.
From this specific point on, learning how to function in everyday life with my ostomy took a lot of patience, time, emotional breakdowns, motivation and positive mental strength. I don’t regret any of it at all. I do not have to worry about missing out or not fully enjoying any more important events of my life. Now as of 2020, I have been medication-free for two full years, graduated school with all of my degrees, feel healthier than ever, working full-time in public relations and am actively pursuing my dreams in the entertainment (modeling/tv/film) industry.
It wasn’t until a couple of months ago, I discovered United Ostomy Association of America (UOAA) and chose to reach out to Advocacy Manager Jeanine Gleba about getting more involved. Since reaching out, I have gained the opportunity to advocate for patient’s access to treatment during the Digestive Disease National Coalition Day on the Hill and spoke on the behalf of UOAA. I am elated to have met UOAA’s team and to represent others like myself who have experienced challenging obstacles.
I couldn’t be more grateful for my ostomy and must say that it changed my life for the good. Life is full of obstacles but how you choose to overcome them will make your life. I chose to take full control of my life in order to have a better quality of life. It doesn’t matter who you are, you can truly do whatever you put your mind to. Believing in yourself and staying grounded in positivity, motivation and dedication is key. Follow your dreams, find what makes you happy and don’t let the negatives take control of your life.
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
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.
United Ostomy Associations of America
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Kennebunk, ME 04043-0525
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