The first year of my life my bladder remained safely protruding through a small cavity in my lower pelvic area. When I was 13 months old, my bladder was enclosed. Oddly enough, I remember the trip to Grandma Evy’s house before the surgery, the pink dress with matching pink bloomers I wore that day, my legs in traction after the surgery, and a nurse warning me about the oxygen tent that was about to drop over my hospital crib. She spoke to me with that “I’m sorry you’re sick and in the hospital” sweet voice anyone would use with a baby.
The next few years were the “wait and see” period. My parents knew that period was over when I showed signs of weak bladder and kidney function. I was almost four years old, still wearing diapers, and had purple bruise-like spots on my body. The doctors recommended that my bladder be removed and my urine diverted through a stoma in my abdomen and caught in a bag that would be taped and strapped to my body. My parents agonized over the decision. They were already at odds since their divorce and this was no different. My father did not want my bladder removed. “You never know what it could be used for later”, he said. My mother was indecisive. They both knew something had to be done to save my life.
In late March 1973, just a month before my fourth birthday, my bladder was removed, and, unbeknownst to my parents, my appendix. At the tender age of three, I sensed that this was not logical or normal. Nevertheless, I had to figure out how to cope with and manage my new urostomy. The funny part and my claim-to-fame is I was never potty trained (for urininating) nor have I ever felt the discomfort of holding a full bladder. Lucky me!
By age five I had mastered my new routine. I learned how to assemble a leak-proof, seven-piece urostomy pouch, manage the logistics of its care, trouble-shoot clothing dilemmas, and disguise leaks as well as its existence. A quiet, unassuming and mild-mannered, blue-eyed girl with curly blonde hair lived a secret life. Sometimes I still can’t believe it’s me, my life, my body. I feel very lucky I had my urostomy from such a young age. It seems so natural and normal to me and I think of myself as normal and just like everyone else.
My school years were tough. I felt alone in my battle over the bag. My family was quiet about my urostomy and I chose not to share its existence with my friends and classmates. It was my biggest secret for many, many years. My mother’s strong Irish-Catholic upbringing did not allow for conversations around bathroom and other “hush-hush” issues and my brothers often teased me about my ostomy. My urologist at Stanford, Dr. Duncan Govan, and ET nurse, Rosemarie, were some of the only people I discussed my urostomy with-just once a year.
I have story after story of embarrassing moments and leaks occurring at the most inconvenient times. I call those events character-builders. I used to pray at night that I’d wake up and the bag would be gone. Reality always came the next morning. Facing my classmates after what appeared to them as me wetting my pants was horrifying. Yet, I still wanted to do the things that every other kid my age did: take dance class, wear a bathing suit, go to sleepovers and Girl Scout camp, and be active. This required planning, preparation, and courage. What if my bag leaks? How do I hook up to and hide my night drainage bag during the sleepover? How do I empty my bag just before the dance recital when we’re supposed to be lined up back stage? How do I face the other girls in the locker room while changing into my P.E. clothes? Do I tell my boyfriend? I had a solution for everything. Besides, nothing could be more embarrassing than the time on the playground when my bag exploded all over the blacktop while jumping rope! Despite the dilemmas and embarrassments, I was a typical adolescent. I jumped rope, climbed on the monkey bars, played the violin and piano all through school, took tap dance lessons, had friends and a boyfriend or two, went to school dances, was in my high school color guard, performed in the talent show, and was physically active. Today, I attribute so much of my best qualities to living with an ostomy. I am resourceful, am a great problem-solver, know that I can teach myself and figure out ANYTHING, I don’t give up, am a risk-taker, and let life’s little problems slide off my back like butter. What a gift to not only myself, but to my family, friends, employers, and community.
I cannot tell this story without paying homage to Dr. Govan. He was a magnificent doctor with warm hands, had a caring and gentle bedside manor, with a tall stature and humble personality that commanded respect. His career spanned over 40 years, ending as Chief of Staff, and I was lucky enough to be his patient for 25 of those years. He was instrumental in ensuring that I had the best team of pediatric surgeons, was sensitive to my needs as a person, not just a urology patient, and was a saint in my eyes. I will be forever grateful to Dr. Govan.
Although today I am confident and secure in my own skin, I did not always feel as empowered. I was afraid to venture out and experience life in my early adulthood. Soon after high school, I married a man who didn’t care about my scars and “plastic-wear”. I put aside my college dreams over fear and necessity and began working to support myself. I was just 18 yet independent. A friend referred me to her uncle’s insurance agency. She said that I was the smartest person she knew and they took her word and hired me. She did not realize she was referring to skills I gained from living with an ostomy because I was not the smartest person she knew! I worked in the insurance industry for almost 11 years, applying my ostomy skills along the way, and gained much respect from my colleagues.
I managed to have two children, something many are surprised to know after learning of my urostomy. I was 20 when I had my daughter and 25 with my son. Both pregnancies were not without drama. Stephanie came two months early after three separate week-long stays in the hospital. During the last trip to the emergency room, the October 1989 earthquake hit the Bay Area. I almost died that October. My urine was not draining and my kidneys and ureters were acting as a bladder. After several months of hospital visits and bed rest, she was born the day before Thanksgiving. We were all thankful for her and my health as she thrived and I recovered.
I vowed to never put myself through that experience again. I also learned to never say “never”. The itch to grow my family was unbearable. I had learned from my first pregnancy what was needed to prevent a premature delivery and visits to the ER in the next. I was on bed rest for 20 weeks during my second pregnancy and had my cervix sutured shut so I could bring my son to full term. On Christmas day 1993 my urine stopped dripping from my stoma. I took my bag off and never put it on again. Finally! My prayers were answered. I woke up and my reality had changed as I always hoped it would. However, it was a dangerous reality. My son was pressing on my urinary tract and blocking the urine flow. I self-catheterized every two hours around the clock to keep from damaging my kidneys further. My son, Brian, was born on March 10, 1994. Sadly, the pink germicidal my new urologist had recommended I sterilize the catheters in had caused scarring and further blockage in my ureters. A revision was eminent.
In July of that same year my urostomy was revised to an Indiana Pouch made from a piece of my intestine (my father was correct about saving my original bladder!). Stanford, again, provided the expertise and Dr. Govan was there to watch over me. A visiting doctor from the east coast performed the surgery. I was now happily committed to carrying different “plastic-wear”-a catheter instead of a bag-but still self-cathing my new bladder every two hours (it takes time for an Indiana Pouch to stretch and hold its full capacity and allow you to go more than one to two hours between voiding). I returned to work and juggled nursing my newborn, cathing, kids, a husband, and household.
A funny thing happened on the way to my urology surgery-I had to talk about my urostomy. My co-workers and friends were curious about my prolonged absence from work and poor health. I had never shared anything with most and very little with others. A burst of bravery came over me. How could it not? I almost died. I survived two very difficult pregnancies. I had not slept for more than two hours at a time for the past year. My kidneys were thrashed. I still had to keep going for my family’s sake. What did I have to loose by telling someone about how I emptied my bladder? So I opened up and shared my story. To my surprise, the news was well-received. Some actually said I inspired them. I couldn’t believe my ears. My secret suddenly became a source of pride to me and inspiration to others. I unknowingly was ending my double life and allowing myself emotional freedom for personal growth and better relationships with others. I can now speak of my urology chronicles with ease and confidence and strive to be an inspiration to other ostomates.
A pivotal point occurred in my life that July. I emerged from anesthesia a different person, no longer taped and strapped to a bag of bodily waste. A whole new world I did not realize I was missing opened up to me. I traded in my insecurities for adventure and tested life’s waters. I advanced in my insurance career and began my college dream. I wore clothing I had never dared to wear and expressed myself like I had never done before. Sadly, it was also the beginning of the end of my marriage. My husband and I grew apart and parted ways. When I look back on this quarter-century period of my life, I now realize that I could have done all those things WITH my urostomy bag fully locked and loaded!
My life journey has had twists and turns just like anyone else. By age 30 seven of my body parts had been removed and a couple pelvic bones rearranged. I changed careers, again on the recommendation of a friend, and now work in Philanthropy. I continued to plow through college for nine years, and graduated in 2005 at the age of 36 with a B.S. in Business Management, all the while raising two children as a single parent. I dated and traveled and socialized with new friends. I met and married a wonderful man who never knew the old me but still appreciates all that I am and all the ways my ostomy has impacted me.
I have endured and jumped many hurtles-sometimes smiling and sometimes not. I want to tell the world that I’ve always been strong and never complained, but I can’t. I’m not ashamed of those feelings because I know they make me human and normal. I’ve have bouts of depression and times when I couldn’t see how to be happy. Since the birth of my first child, I’ve had chronic kidney infections. My kidneys were never as strong as they could be and the stress they endured left much scarring and caused the cortex of each to deteriorate. I developed Type I diabetes in my mid-thirties, which has further contributed to my failing renal health and left me in stage III of chronic kidney disease. Regardless of my health conditions, I’m still active, work full time, spend quality time with my family, hang out with friends, travel, and strive to live each day to the fullest.
My purpose for telling my story is not to elicit pity or be dramatic. It’s quite the opposite and my message is simple yet cliché: When life gives you lemons, make lemonade. Everyone has lemons and most don’t want to hear you complain about yours (thank you to my husband and friends who allow me to vent my lemons!) Carry your lemons with pride and use the lemonade you make from them to bring you and others wisdom, courage, inspiration and happiness. Yes I went through tough times (and there may be more to come), but without my urostomy, I would not have developed the drive, determination and perseverance I needed to survive my crazy childhood or finish college; the strength that helped me manage through tough times; the patience I needed (and still need today) to be a parent and manage my health conditions; the confidence and strong will that tells me “I can and will”; the skillful mind that has always kept me employed; the easy-going spirit that allows me to not sweat the small stuff; and most importantly, the perspective I have to share with others. For all this I am thankful for my ostomy.
Life doesn’t give us patience, determination, or strength. Life gives us opportunities to practice patience, be determined, and be strong. Your ostomy is an opportunity. Don’t let this opportunity escape you.