Breaking the Silence

by Charmaine Taylor
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

“An ostomy is OK – So am I”, says Charmaine Taylor on life after surgery.

I was only 20 years old when I was diagnosed with ulcerative colitis back in 2004. It was the biggest shock of my life. I had to accept the fact that I had a chronic illness and that I had to swallow several pills every day for the rest of my life. At that time, I didn’t yet know a bigger shock lay ahead.

I had noticed that something was wrong when I had had severe diarrhea for days and, sometimes, even bleeding. As days went by I also started to have cramps and to feel bloated. A visit to a gastroenterologist led to a colonoscopy and a diagnosis of Ulcerative Colitis, a type of Inflammatory Bowel Disease (IBD), which affects the large colon. Symptoms vary from one person to another and researchers still do not know how this condition originates. One theory suggests that it is due to environmental factors, since it’s commonly seen in well-developed countries; other theories suggest that the origin is genetic.

I was devastated every time I had a flare up. That meant the inflammation was acute and I needed to take anti-inflammatory pills. Over the last seven years I had been prescribed all the medications available on the market, including intra-venous antiinflammatory treatment. I had high hopes for the last treatment and I never imagined that it would stop working after a few sessions. Deep down I knew that the last resort was surgery, but I was too scared to just think about it. I was not ready to take that step yet.

As the days went by and my symptoms worsened, I made an appointment to see a surgeon. I had two options and not having surgery wasn’t one of them. I was told I could opt for J-pouch surgery, in which the large colon is removed while a ‘pouch’ is made out of the small intestine, which is then connected to the anus. In this type of operation, a temporary ileostomy is made which is then reversed when the pouch is healed. The second option was a permanent ileostomy, which consists of removing the large colon and bringing the end of the small intestine (ileum) out on the abdomen, leaving an opening called a stoma. Intestinal waste would then pass through the so called stoma and would then be collected in a bag.

I opted for the permanent ileostomy and June 10th was the big date. At that time I was trying to fill my days as much as possible, so that I wouldn’t think about the surgery. After a few weeks, I met the stoma care nurses who were very helpful and supportive. On my first visit they showed me the infamous bag and also gave me a couple of bags to take home with me so that I could get used to them and to the idea of using them, before my operation. I had so many questions running through my mind like: what am I going to expect after the surgery? Do I have to change my entire wardrobe? What about noises and odours – would they affect me while socialising with others? What about sex? Would I be rejected? Would pregnancy and exercise be possible? The following weeks passed by so quickly. I couldn’t believe that the surgery was over until I felt the bag when I woke up in the recovery room.

Eight months have now passed since my operation. My life hasn’t been a bed of roses but neither has it been an uphill struggle. Looking back, I’d say that this was just another of life’s challenges. With time, the incision heals and the pain is something I can now barely remember. Looking back at this rollercoaster ride, I have learned that, through openness, people will understand your position and that, with knowledge, people become more aware and understanding.

Life naturally has its ups and downs. There will always be another corner to turn or another hill to climb but life can and does still go on. One can choose to be a passenger and just go along with the ride, or to take advantage of the journey and steer your own course. I chose the latter. I still wear fitted clothes, I still go the beach, I still exercise, and I eat everything. The only difference is that, nowadays, I use the bathroom in a different way.

At first I was very conscious about the bag. I kept on checking it over and over again. That’s to say nothing of the look in the eyes of the people I met. I used to think that everyone was looking at my stomach or that someone had noticed something under my clothes. Before the operation I had the liberty to keep on or take off the bag when and where I wanted to, but now I don’t have any choice other than accepting my new me and learning to cope with the way I am.

I have made some small modifications of course, just like any other change brings along like for example, moving out of your parents’ house and start living on your own, having children, changing a job where you have different working hours and so on. Positive thinking helps a lot in this case and I have had a lot of positive things to be grateful for such as no more pain, no more pills, no more going in and out of hospital, no more hospital and clinics visits, and that’s without mentioning the loads of toilet paper I have saved.

Best of all, I can now start living my life and not just existing. I have succeeded in living a normal life especially with the help of my loving husband who has encouraged me to start swimming and exercising again. Over time, I have regained my energy and my confidence. However, I still had an issue, which I was not so confident about. And this was intimacy. My husband’s support and reassurance have put me at ease. At first I used to feel very embarrassed and not sexy enough for him. I feared rejection, but slowly I overcame this fear as well – and there’s lots of sexy underwear that would suit anyone who’s had an ostomy.

I cannot change or forget these last seven years of my life, but as Carolie Raia Darsey Malloy said “I am strong because I’ve known weakness, I am compassionate because I’ve experienced suffering, I’m alive because I’m a fighter, I’m wise because I’ve been foolish, I can laugh because I’ve known sadness and I am open to love despite the pain of loss.”

As you can see, I was very lucky to find a lot of help and support from the people around me. Thanks to my experience, I want to stress the importance of the support by relatives. Being accepted as you are by those close to you, really help you to accept your ‘new’ body yourself, and to take that important first step on the long road of recovery.

THANKS AND DON’T BE AFRAID
I wanted to publish this article to say thank you to my surgeon and all the medical team who assisted me, to the stoma nurses and all the other nurses who helped me throughout, to my family and friends and, last but not least, to my husband. Most of all, I wanted to talk about my experience to encourage future ostomates not to be afraid or, worse, embarrassed. If you are putting off surgery, I hope that this article will be a ray of light for you. Keep in mind that a stoma does not stop you from doing the things a normal person does. It’s the person himself or herself who creates such obstacles. Out there, there is a life waiting for you to be discovered, lived and enjoyed till the end. Keep in mind that people have one thing in common: we are all different.

“I’M STILL ME”
Not every case of inflammatory bowel disease (IBD) leads to surgery but left untreated, IBD could turn into a malignant disease. Several patients respond to the treatments that are available. Still, in a small percentage of cases the medications stop working after a short while, which is what happened to me. When I went for my post-op visit, my surgeon told me that I had an early stage of colon cancer and that I had taken the best decision at the right time. I thought I was dreaming or that I have misinterpreted her words but I wasn’t.

In the end, the ostomy bag has saved my life. It’s a pity that, nowadays, while we talk about colon cancer we shy away from talking about the cure. Many people still have a negative view about this surgery and this is mainly because there has been little attempt to generate awareness so far. My wish is that someday there will be a support group, as we need to educate people more and more and at the same time support ourselves.

I understand that everyone is free to take his or her own decisions in life like, for example, Farah Fawcett Majors who decided to die rather than having an ostomy, but I think that that is a pity. Others live their life in misery trying to accept and embrace their new body when, with a little bit of help and support from the people around them, they could manage to live their life to the full.

Many people – and that includes me – will say that this operation was a blessing as they started living once again after many years of suffering. Nowadays I have the peace of mind and the freedom to go out, as I am more in control than ever. I have my confidence and the energy back, which I had forsaken a long time ago. A part of my intestine may be missing, but I’m still me and I feel better than I ever did. If you need surgery, don’t be afraid. You’ll be better than ever. Trust me.

Re-printed with permission from the article’s first appearance in A&H, a health and wellbeing magazine published in Malta. Photos: Pippa Zammit Cutajar
Charmaine Taylor is the founder of the group Giving Ostomy A Voice – find out more here.

“Breaking the Silence” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

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A Life of Long Odds

by James Cole
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

I was born on an August day in 1966 with a birth defect that the doctors at our local hospital could not identify. My parents were only told that my bladder was on the outside, and that I was in critical condition. It wasn’t until I was taken to Columbia Presbyterian hospital in New York City that a capable pediatric surgeon identified my condition as bladder exstrophy (BE). He performed emergency surgery and discovered that I had no colon, so he was forced to create an ileostomy – a variation of a colostomy. As my birth defect had also affected my digestive system, it meant I actually had cloacal exstrophy (CE), the most severe type. Despite the doctor’s efforts, my prognosis was poor: at this point in medical history, few CE babies had survived. Yet I had a strong will, and just happened to have come into the world on ‘The Day of Long Odds’ on the Astrological calendar. Within several days I was fighting back – a fight that would continue throughout my entire life.

My ileostomy and lack of colon made me susceptible to frequent fluid loss and dehydration, so keeping me alive was a challenge. My first hospitalization lasted six months, and my early years were filled with repeated hospital stays and surgeries, as doctors tried to build me a functional urinary system. Without a functioning bladder, the ureters – the tubes from my kidneys – were brought to the outside, necessitating me to wear diapers for several years beyond the normal time for toilet training. Having ureters exposed to the outside was dangerous, resulting in frequent hydronephrosis – the backing up of urine into the kidneys – and infections. Despite my condition, I was blessed with loving parents and siblings. I learned to walk and reached many developmental milestones ahead of schedule. I was even able to attend preschool and later public school with the help of caring staff and teachers.

My early years were nevertheless a struggle, filled with frequent pain, and emergency operations. Yet whenever I was not sick or hospitalized, I had the happiest childhood a kid could imagine. We were The All American Family. I lived in an historic farmhouse with a barn and woods where I spent countless hours playing. We did birthday parties, vacations at the lake and beach, all the things other families did. When I was seven, ostomy products for young children finally became available, allowing me to finally shed the diapers, a huge a milestone. I still required three pouches: two for my ureters, one for my ileostomy, which came off frequently. This did restrict my life in some cases. For example, I was never able to spend the night at a friend’s house or do as much physically as my peers, and I would often end up in the ER from something as simple as a stomach flu.

At age twelve, I underwent a major reconstruction of my birth defect, when a talented surgeon built a urostomy, which allowed my ureters to be placed back inside my body where they belonged. This safer and more dependable urinary outlet eliminated the hydronephrosis and infections, marking a dramatic improvement in my health. It also made it much easier for me to care for myself, now that I wore two pouches instead of three. I became more independent, and continued the predictable process of growing up. And at age 14, the same surgeon rebuilt my reproductive system. After this ‘final’ corrective surgery, my doctor basically said, “Have a nice life.” Yet I was far from normal in appearance and function, and the trauma of so many surgeries resulted in my lagging far behind my friends in terms of growth, let alone my entering puberty.

It was during these painful adolescent years that I concentrated on my artistic talents. I had discovered filmmaking at a young age, and I continued making movies during the lonely Junior High years. After my mother and I moved to a small town on Cape Cod during high school, my film endeavors attracted many new friends. Thus began one of the happiest times of my life – one ironically also marked by complete denial of my exstrophy…a state in which I would live for many years.

After moving to Cape Cod and starting a new life, I felt reborn. I had many new friends, a renewed passion for my filmmaking, art, and even acting – participating in two high school productions. Most importantly, I was well. Now that all of my reconstructive surgeries were complete, I began to define myself as “Normal …with two bags.” It wasn’t unreasonable: As long as I stayed healthy and hydrated – critical to avoid kidney infections – I felt good and had boundless energy. I was so confident that I didn’t bother finding a new doctor in Boston; instead I kept in touch with my surgeon in New York, driving down for checkups every couple years. The bad times were truly behind me.

I graduated from high school, applied to several colleges, and was accepted at the University of Massachusetts, Amherst. Some accommodations had to be made of course; having two ostomies necessitated that I be granted a waiver from sharing a dorm room, a requirement for incoming students. Being the only freshman with a single room did raise eyebrows, however, so I lied or made up excuses, no different than when I was a child. How could I be honest about my condition with people I barely knew, when I was lying to myself?

College was a golden age. I stayed healthy and active, averaging the norm of five classes each semester. One day, my mother and grandmother drove up to visit me at school. As they arrived on campus, they passed a student biking up the very steep hill up to my dorm. Of course the student was me. In addition to earning my degree on schedule, I continued to make movies, shooting a Stephen King short story, The Last Rung on the Ladder. This film went on to become an officially recognized King adaptation.

My artistic drive was in part a response to my fear of intimacy. From high school through college and even beyond, I shied away from dating. When a woman expressed any interest in me, I invariably pulled away. The few relationships I did experience never progressed far. I was too terrified to tell the truth about myself, to acknowledge that I wore bags, let alone that I had exstrophy. My condition was offlimits to everyone, including myself…until something went wrong.

That first ‘something’ was a terrible sickness in the winter after I graduated from college. Unbearable stomach pain put me in the local ER, where an ultrasound revealed an enflamed gallbladder. The complexities of my condition – scar tissue from multiple surgeries – necessitated transfer to Mass General in Boston, where I had emergency surgery. The surgeons discovered gallstones so severe that my gallbladder had died and had to be removed. It was a brutal surgery and recovery. Nature was trying to tell me that I was not normal. I didn’t listen.

I continued pushing, pushing, and pushing. I wrote a film column for the local paper, worked summer jobs, continued making movies, and writing – dreaming of a career in Hollywood. Then, a year and a half after graduating from college, I packed up my car and drove across country to California. Despite being completely unprepared for the life that awaited me, I adjusted. I became a Temp. The first couple years were terrifying – working at countless unfamiliar companies, until I landed a gig at Walt Disney Imagineering (WDI) as a staff assistant. Happily, WDI was a relaxed and creative work environment, and I became a regular there, working my “day job” as I honed my writing craft and tried to break into the movie business.

After almost a decade of happy and productive years in LA, my health began to decline. I experienced painful digestive problems that could not easily be identified. My diet became restricted, and it became harder to work and function. Eventually I found a pediatric urologist at UCLA who specialized in exstrophy, who diagnosed my problem: a severe inguinal hernia – a common problem for males with exstrophy. I had major surgery in August 2001 to repair the hernia. Recovery was difficult, but I progressed, and after several months I had healed from the surgery itself – healed too well, in fact. The internal scar tissue kept growing, and developed into adhesions that caused pain and new digestive problems. My world fell apart. It was as though I had won the battle but lost the war.

Unable to work even part-time, I became disabled, and began to retreat into myself from the chronic pain and sickness. I searched for other doctors or specialists who could help me. One surgeon – an expert in rebuilding people after severe injuries as in car accidents – said, “I could only make you worse.” And during a visit home on Cape Cod, a local GP who understood my condition put it bluntly: “My dear boy, Jesus Christ himself wouldn’t cut you open.”

Still, I did not give up. I knew I had to find answers. And the only way to do that was to truly face the fact that I was not normal. Little did I know that a fateful encounter would force me to confront my condition head-on…and in the process, help me realize one of my biggest dreams.

It was a dark time. Then, in December 2001 I ran into my friend Jay Holben, a talented director who, like myself, had adapted a Stephen King story to film. He was preparing to make another short film, but needed a script. I didn’t have a short script, but I did have a short story.

Several years earlier, I had finally written about my condition with the story “Hot Shots.” Based on my urostomy surgery when I was twelve, “Hot Shots” had never been submitted for publication, and I never thought it would get much exposure. Nevertheless, I sent it to Jay, hoping that he would like it. Since it was about kids in a hospital, I was convinced he would not be interested in actually filming it as a movie. To my surprise, Jay was more than interested: he was committed.

For the next couple months, I labored to adapt my story into a shooting script. I ended up doing sixteen drafts, thrilled as my writing evolved into an even more powerful – and honest – story about both the surgery, and how hard I struggled to hide my condition. Jay kept me involved in the pre-production process, and I was thrilled to participate in the auditions.

On March 1, 2002, I walked onto the set of The Night Before, my first professional film. It was like walking into a scene from my own life – a recreation of the hospital room in which I had spent six weeks. The movie was shot in four days, and everything went perfectly: a happy set with an amazing cast and crew. It was magic. I had little involvement during the film’s postproduction, however, and continued struggling with my health, still searching for answers. Yet, The Night Before had renewed my creative spark and given me something to look forward to. It had given me hope.

That hope translated into a fierce determination to somehow heal myself, and it was during this time that I discovered the Association for Bladder Exstrophy Community (ABC), and the bladder exstrophy community. I began to participate in online forums and message boards, and for the first time in decades I discovered that I was not alone. There were others out there like me, and connecting with fellow exstrophy adults, as well as parents of children with exstrophy, gave me purpose. I was able to offer help and compare experiences, and in the process, discovered much about myself.

Just as The Night Before was completed in the spring of 2003, it won the International Cinematographers Guild Showcase Award. The awards ceremony took place at the Directors Guild of America in Hollywood. Beside the obvious thrill of watching my first produced story in a big theater, I was witnessing my own life up on the screen. Most importantly was the reality that one of my biggest secrets – the fact that I wore bags and had exstrophy – was being shared not just with friends, but also with an entire audience of people whom I did not know, and who did not know me.

Two months later, we had our official premiere on the Warner Bros. Studio lot, attended by many friends and family. It was a thrilling experience, but The Night Before soon gained a life and meaning beyond the film festival circuit. Only a couple months after its premiere, I attended my first ABC conference in Milwaukee as a guest speaker, where I presented The Night Before to a conference room of people with exstrophy patients, parents, doctors and specialists; an audience who understood its story on a far deeper level than most of the population.

The Night Before has since been shown at exstrophy-related conferences in New York, Toronto, Seattle, Pittsburgh, as well as overseas in Australia and the United Kingdom. I was able to attend several of these events, and my story has gotten more exposure than I could have ever imagined.

Most remarkably, the act of telling my story – be it in person speaking at conferences or through online forums – has expanded my horizons and changed my life. Exstrophy is no longer a shameful secret: it’s simply what I was born with. Coming to terms with my condition and accepting myself has helped the process of healing myself, physically and emotionally.

And my health has improved in recent years, through a combination of complementary medicine, changes in my diet, and stress management. This improvement has allowed me to resume pursuing my dream of a career as a paid writer. Living with exstrophy is still not easy, however; I continue to suffer with pain and fatigue, but being able to help others with exstrophy or similar medical conditions – often on a daily basis – makes me feel that my suffering is not in vain. I am lucky to be alive. I know I am here for a reason.

© by James Cole 2012. All Rights Reserved. James is from Burbank, CA

“A Life of Long Odds” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

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Fun at the Airport

by CJ Papoutsis
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

My husband and I travel to Greece frequently and since my ileostomy surgery in 2009, we’ve gone four times. I pack my ostomy supplies in transparent plastic bags divided between my husband’s carry-on and mine. Airport security has never questioned us until our last trip and the problem wasn’t caused by my ostomy supplies, but a scarf!

When I dressed that morning in Athens, I put on a scarf to keep me cozy for the long trip home to Victoria. Security staff in the Athens and Frankfurt airports showed no interest in me, my scarf, nor the ostomy supplies in my backpack. I’m always happy when “Lucifer,” my stoma, doesn’t cause undue attention at airports.

We arrived in Vancouver, claimed our bags, passed through Customs, and rushed to catch the puddle jumper plane for the twenty minute flight to Victoria.

At Security, I placed my belongings on the conveyer belt and proceeded through the metal detector. Things must have been deadly slow that day, because waiting at the end of the conveyer belt, a middle aged, pompous-looking authority figure looked at me and shouted, “We have a woman with a scarf here!”

I’d forgotten to take off my scarf. Two more security officers rushed over, ready to assist him if I caused trouble. I relinquished the scarf without incident.

“You have two choices,” Captain Regiment announced to me at top volume. “You can step over here,” he pointed to a buzzard-faced woman standing beside a screen, “or” he pointed to a transparent cylinder, “the full body scan.”

The joy of it all. I’d travelled all the way from Athens and 20 minutes from home, I meet up with the Goon Squad.

I chose the body scan and stepped into a machine like something on Star Trek and had all my secrets revealed.

When I came out, Captain Regiment pointed to my abdomen and said, “Is that a money belt?”

A money belt? I wish!

After a 20-something hour trip, I was tired and growly. This guy was only doing his job. Not particularly well, but with alacrity. I resisted the temptation to have some fun.

“No, it’s an ostomy pouch,” I answered.

“A what?” he asked.

“Kind of a medical thing. Would you like to see it?”

“No, no! Please go on through.” His face turned purple as he handed me my scarf.

Justice served.

Carolanne is a member of the UOAC Inc. Victoria, BC Chapter

“Fun at the Airport” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Fun at the Airport

Living with VACTERL Syndrome

by Kaitlyn O’Brien
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

Just moments after I was born I was rushed to the Hospital for Sick Children, affectionately known as Sick Kids in Toronto, Ontario. That is where my story begins. My name is Kaitlyn O’Brien and I was born on June 27, 1996. I am a 16 year old female who has had more surgeries than birthdays. I was diagnosed with VACTERL syndrome in my early years and that has resulted in me having 40 surgeries and having six different ostomies throughout my life.

But let’s take it back to that day when the nurses realized that I was not like anyone else. I was born with an imperforate anus and many other birth defects. At first my intestines didn’t work then my body wouldn’t let me eat properly. The day after my birth I was given a colostomy. This is a surgical procedure that brings one end of the large intestine out through the abdominal wall. Stool would move through the intestine and drain into a bag attached to the abdomen. I had this until a further surgery was done to make a passage way which would allow me to pass stool like most other people. I was also given a gastrostomy also known as a g-tube. This was a button like tube that was placed in my abdomen to allow feeding. I had complications with my digestive system as I had a tracheal-esophageal fistula. Also at this time I had a fundoplication surgery in which the upper curve of the stomach is wrapped around the esophagus to prevent vomiting. The times that followed were extremely difficult, sort of like a roller coaster one might say. The first year of my life was spent in the hospital hooked up to all sorts of machines recovering from many surgeries.

A few years later I had problems with my kidneys and bladder and again more tubes were put in place and passageways were created. At the age of six, I underwent a surgery that would create a tunnel-like passage way from the outside of my stomach to the inside of my bladder using my appendix. This was called a Mitroffanoff, which is considered an ostomy as it is a stoma. Complications arose when one day I was unable to catheterize. This called for an emergency surgery. A suprapubic Foley catheter was put in place which was attached to a bag I wore on my leg that collected the urine. I had this for about two years while recovering from the failure of my Mitroffanoff. A doctor then operated creating another passageway using my bowels. This one being called a Monte.

All these birth defects and abnormalities led to a diagnosis of a rare condition called VACTERL syndrome. VACTERL is an acronym used to characterize abnormalities of the Vertebrae, Anus, Cardiovascular system, Trachea, Esophagus, Renal (kidney) system, and Limbs. I may seem normal on the outside but I am different in many ways on the inside.

I am currently living with a monte and a cecostomy. My life was difficult when I was younger and still is now. I now better understand what’s going on but face other challenges like school, friends, physical activity and acceptances.

School has definitely been a struggle over the years; missing countless weeks due to being a patient at Sick Kids. With the support from my friends and family I have managed to continue my studies like everyone else. I have an amazing group of friends who have been there for me every step of the way and I couldn’t have done it with out them by my side. They give me hope and strength to push through the hard times to get to the good.

After facing and overcoming so many life changing obstacles I was told I would no longer be able to play any contact sports, but being the person I am I was determined to find some way of staying active. I took up ballet for almost 11 years. This ended when I had to have an emergency surgery and life just got too hectic to continue that passion. Throughout my life I have found a love for running. I feel it is a great way to clear your mind and move freely. I have been on the cross country and track team for as long as I can remember. I have gradually started to swim, bike and run with the support from my brother and parents. I completed my first triathlon in the summer of 2012 and I have now become hooked.

Imagine walking on a beach close by or one while on vacation with your family. You’re wearing a bikini or if you’re a guy shirtless and every single person you walk by gives you dirty looks and just stares at your stomach as if they have never seen a scar or tube or even an ostomy bag before. Well that’s what happens to me all the time. It has taken me many years to gain enough confidence to even wear a bikini but I now have realized that my ostomies are part of me and there’s nothing I can do to change that. Having ostomies make me no different than anyone one else and in the end they allow me to live my life. “Scars are tattoos with better stories” –AA

Other struggles I face include: putting a smile on my face and acting like I’m okay when deep down I’m not, having to go through scary and painful procedures, taking time away from friends and family when being an in-patient.

Having ostomy surgery can be a life changing experience but not as life chang- ing as a place in this world that I’ve been. Imagine a place where everybody has an ostomy, a place where being judged is out of the question, a place where you meet people just like you, a place where everyone supports everyone, and a place where great friendships are created. This place is called Easter Seals Camp Horizon and it occurs every year near Calgary, Alberta. UOAC Ostomy Youth Camp is a week long camp every summer that is dedicated to youth with an ostomy. This week is filled with many outdoor activities like rafting, hiking, rock wall climbing, swimming and my favorite – the giant swing. Although I seem to get stuck at the top almost every time, I have the support from everyone there to keep trying and in the end it’s worth it. I would have to say that moment you pull that trigger, and drop from 50 feet in the air it signifies the feeling of freedom. It’s a good reminder that even though you have an ostomy you can achieve anything you set your mind to. During this week everyone becomes close, like family. We support each other through the struggles we face from day to day. It was incredibly hard to say good bye to one of our ostomates this past year, Alison Atkins. Camp will not be the same without her and I will be sure to throw a stick in the fire in memory of her this year and all the years to come.

Even through all my trials and tribulations I have still managed to find ways to live life to the fullest and treasure every moment and embrace the life I was given. This is a poem that I wrote while I was in the hospital.

I am courageous and brave
I wonder if I will ever get better
I hear the sounds of children laughing
I see the pain in my parents’ eyes
I want every child to be well
I am courageous and brave

I pretend that my life is not difficult
I feel the beat of my heart
I touch my long strands of bravery beads
I worry about getting too sick to be cured
I cry when I’m in pain
I am courageous and brave

I understand that the doctors are trying their best
I say live each day like it’s your last
I dream about getting better
I try to believe in myself
I am who I am

Kaitlyn O’Brien is a member of Ostomy Toronto

“Living with VACTERL Syndrome” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

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Wear Your Battle Scar with Pride

by Jessica Grossman
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)

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My story is a story synonymous with all stories told of those who have dealt with diseases  and have overcome them. Just like the protagonists of those stories, I too was busy living a normal life full of great people and fulfilling experiences until I was forced into battle against a sickness. After much pain and suffering, I won the battle: a battle that left me with a large battle scar. While many have taken a similar scar and hidden it in shame, I knew I had no choice but to wear it proudly as a symbol of my victory. I am Jessica Grossman, the founder and spokesperson for Uncover Ostomy, and I wear my ostomy with pride.

Uncover Ostomy (UO) is an online awareness campaign that was created to defeat  the negative stigma surrounding an ostomy. Launched in October 2009, the campaign has become the largest and fastest growing ostomy campaign to date. Using only online touchpoints through a website, blog, and Facebook page, UO has been able to spread ostomy awareness completely through conversation and sharing. The campaign has also grown organically into a support group for the vast number of people ready and willing to share their ostomy story and give advice to others.

Spreading ostomy awareness has been a large part of my life since I became an ileostomate as a child. I was diagnosed with Crohn’s disease at nine years old and remained relatively stable until I came down with a terrible stomach bug at the age of eleven that triggered a massive flare up of the disease and forced me to take residence at Toronto’s Sick Kids hospital. After two years  of pain, malnutrition, torturous tests, and isolation, I was told that I had a decision to  make: ostomy or death. At thirteen years  old,  the decision seemed obvious. The ostomy was my lifesaver and I was grateful for it.

The gratitude I had for my ostomy was evident in the positive attitude that I shared with everyone; and when I say everyone, I mean everyone. From the moment I returned to my eighth grade class after my extended absence I began to talk about my ostomy without a second thought. There had never been a question in my mind as to whether or not I should share it. I was alive because of the ostomy and I wanted everyone to know.

This open and positive attitude followed me into high school as I embarked on not only a new education, but a new social circle. I did not know a single kid at this school. Though I knew I was faced with the task of making an entirely new group of friends, I also knew hiding my ostomy was not the way to do it. I knew that if I wanted to make new friends, these friends should know exactly who I was. By the end of my high school career I had not only made some amazing friends who were aware of my story, but I had also taught most of the students at the school what an ostomy was.

University was much like high school for me, yet on a larger scale. I was once again in a situation where I needed to make a new circle of friends and I decided to continue to share my story. It never even dawned on me that talking about my ostomy at a sorority recruitment event might not have been the best way to make an impression. Bodily functions are not often a topic of conversation that usually comes up in a group of 60 classy women, yet I still opened up. If they wanted me to be a sorority sister, they would have to accept me. Needless to say, in my final year of university, I became president of that sorority.

I’ve been extremely fortunate in the nine years that I’ve had my ostomy to be able to say that I’ve never experienced negativity, rudeness, or rejection because of it. I have never been refused friendship, have never been treated with disrespect, and I have never been shunned from belonging or contributing to a group of people. While some may say I have been lucky, I respectfully disagree.

It may have been luck that helped me overcome my disease, and it may have been luck that kept me healthy after surgery, but luck was not what contributed to the life I led after my ostomy. I was able to, and still do lead a happy and full life because I accepted my ostomy right from the start. I was never sad or ashamed of what I had, but I was confident and open about who I was. I not only spoke of my difference, but I did so with such positivity that all who I told could not help but see the ostomy as I had; a lifesaver.

UncoWear Your Battle Scar With Pride 01ver Ostomy was a campaign created to spread my attitude to others with ostomies. I created it to show others with ostomies that having an open and positive attitude towards the surgery can be a wonderful thing. Not only does being open and positive teach the public about the ostomy, but it also helps break the negative stigma surrounding it. The more of us- the ones with the bags- who come forward and talk about it, the more the world knows about it and understands that ostomies are not something to be ashamed or upset about, but something to be proud of.

Wear your battle scar with pride.

For more information on Uncover Ostomy, please visit the website at http://uncoverostomy.org and join our Facebook page at http:// facebook.com/UncoverOstomy

 

Wear Your Battle Scar with Pride (OC Layout)

 

“Wear Your Battle Scar with Pride” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada magazine by becoming a member or supporter of Ostomy Canada Society. Find out more here.

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