Tuesday, December 20, 2011

Guest Post: Lois' Story

Hey Gutsy Generation! Check out this great story and the amazing IBD & Ostomy Awareness Ribbon (link below!)


“You don’t have appendicitis.  You have Crohn’s disease,” the gastroenterologist stated matter-of-factly, changing my life with that sentence.  I was seventeen years old and I still remember the impact those words had on me, even though they were uttered over 40 years ago.  I knew this pronouncement could not be good.  I’d never heard of Crohn’s disease and it wasn’t one of the big three: cancer, heart disease, or diabetes.  And it sounded like a disease for old people.  I was just seventeen!

I’d been telling my parents and doctors that something was terribly wrong with me for nearly two years but no one was really listening.  My symptoms began in childhood with stomach aches and fevers that spiked and then suddenly disappeared.  At a cousin’s Bar Mitzvah reception the photographer waited impatiently while I ran to the bathroom several times before he could take the family photos.  The expression on his face and his body language spoke volumes, and I picked up his silent message that what I was doing wasn’t acceptable.  At age eleven, the first tentacles of shame and embarrassment began winding through me.

A year later when my female classmates were beginning to develop breasts and wore training bras proudly proclaiming their blossoming womanhood, I still looked like a prepubescent child.  In an effort to blend in and look like my girlfriends, I started walking slightly hunched over thinking the front of my blouse or dress would “poof out” giving the illusion of breast development.  Waiting for my first menstrual period became unbearable, and I decided drastic measures were needed, so I prayed nightly to G-d.  My reasoning was if this same being could part the Red Sea for my ancestors as they fled Egypt, then starting my period would be a very minor miracle!  Despite two years of fervent nightly prayers, nothing happened, and at fourteen my weight hovered between eighty to eighty-five pounds.  My mother, instead, stepped in and decided I needed to start wearing padded bras.  I hated how they made me look—like the pointed end of a Delicious apple!  But the fear of not looking like my classmates was stronger.  Changing for gym class was an ordeal and I tried to use the locker door as a shield so no one would see that I was so different.  Alarmed at my weight, my parents tried bribing me to eat, saying if I got to 90 pounds, I could have that blue, cable-knit mohair sweater that was a “must have” at my high school.  I really didn’t have an appetite and shopping for clothes with my mom was a nightmare, as she commented that I was “nothing but skin and bones.”  She was frustrated and I was beginning to hate myself.

By the time I was fifteen, the painful abdominal pain was intensifying, along with more pronounced fevers and the family physician was making house calls every six weeks or so (they did that in the 1960’s!), diagnosing a stomach virus and prescribing Phenobarbital for the pain. 

Alarmed that there was still no breast development or menstrual cycle at sixteen, I had my first gynecological exam.  I was so frightened.  The gynecologist assured my mother my birth canal was perfectly normal and I’d be able to bear children, but he was puzzled by my immature ovaries and my arrested development.  Meanwhile the abdominal pain and diarrhea that were intensifying in frequency began occurring at night.  Painful leg cramps woke me up, the result of potassium depletion from frequent diarrhea.

In an effort to find a reason for why I looked the way I did, my mother took me to numerous physicians in Pittsburgh, Pennsylvania, but they all waved my symptoms aside or worse, had no answers.  One gastroenterologist, after roughly administering a sigmoidoscopy, told both of us that there was nothing physically wrong with me, I was just a nervous child, and if I didn’t watch it, was a good candidate for colitis!  After this last doctor’s pronouncement, my mother sat me down in my room and reminded me that according to the doctors, I was not sick. “If you don’t watch it, you will end up in a hospital and it wouldn’t be a normal one.  Do you understand what I am trying to tell you?”  After assuring my mom I understood her words, I stared into the mirror of the vanity and repeated those same words, but something inside rebelled.  At a “gut” level I knew something was very wrong.  I told my mother I didn’t want to continue seeing more physicians since they were dismissive, and uncompassionate.  She convinced me to see one more, and while in his office, I developed a fever of 102 degrees.  “You can’t make up fevers, Lois, there is something physically wrong with you and we have to find out what it is.”  “No,” I said, “you aren’t coming near me.”

Shortly after my seventeenth birthday, the abdominal pain, fevers, and diarrhea accelerated and I began losing weight at an alarming rate.  I was constantly thirsty; the sight and smell of food nauseated me.  Walking became difficult due to a mass that had developed in the lower right quadrant of my abdomen, and I had to shift the weight to the left side of my body to avoid the painful feeling.  I made a detached diagnosis of cancer and assumed it was just a matter of time before I died.

Halfway through my senior year in high school I collapsed in excruciating pain and the diagnosis from another doctor was appendicitis. My stunned mother leveled her blazing black eyes at him and said, “You mean to tell me my daughter has had appendicitis for nearly two years, and you are just figuring this out now?” I was rushed to the hospital and prepped for an emergency appendectomy which revealed a perfectly healthy appendix but a badly inflamed ileum.  Because of the severity of the inflammation, the surgery could not continue. I was seventeen years old and weighed 62 pounds, but at least I knew I wasn’t making this up.  Along with the fear, there was a sense of vindication.

I  spent three weeks in the hospital, trying to come to terms with this diagnosis, feeling alone and isolated from my friends, not being allowed to go back to school because my physical and emotional health were deemed too fragile. I was home schooled for the remaining four months of high school.

“Why me,” I shouted angrily at my dad.  I wanted an answer.  At seventeen, most kids don’t think their parents know much, and I was no different.  I thought my dad, who related everything in military terms, was probably clueless.  But his words have stayed with me till this day.  ”Perhaps, later in life, you will meet someone, and because of what you are going through now, you will know what to say, and how to help.”  My father’s words not only proved true but continue inspiring me, and provide a connection with him even though he has since passed away.
Treatment at that time consisted of high doses of steroids and I experienced the “joys” of prednisone, which included fluid retention, an appetite that wouldn’t be sated, and feeling as if I was on am emotional roller coaster ride.  I looked in the mirror and wondered how, seemingly overnight, I’d become a chipmunk!  The only things missing were the fur and tail! I felt like a freak and didn’t want the few friends that still came around, to see me.  I was put on a strict diet that further isolated me from my friends; no pizza, hotdogs, or French fries!  After five months on steroids, and no change, my parents took me to Philadelphia for a second opinion and he concurred surgery was necessary.

The night before I was to be admitted to the hospital, was the night of my high school prom.  Sitting outside in the warm June night, on our porch, my mom and I watched my neighbor, Robbie Rubin, being escorted by her dad, wearing a beautiful long dress.  As my mom was lamenting her sorrow at my not being able to attend the prom, I was thinking about the upcoming surgery; the prom was the furthest thing from my mind.  And I certainly didn’t have the boobs to hold the dress up!

Once the first bowel resection, which removed six inches from my small bowel and a foot and a half from the large, was completed, I began gaining weight and developing normally. I enrolled in the college I had been accepted at, and was enjoying life for the first time in years.  But my recovery was short lived and nearly a year later, the Crohn’s disease had reoccurred.  I landed in the hospital again and could only take a few courses at the local university.  Once again, high doses of steroids, and limited food choices.  I’d go to a favorite burger hang out and ask for two bottom buns!  Since seeds were on the “can’t eat” list and the top of the hamburger bun was liberally sprinkled with them, I’d request the bottom bun because there were fewer seeds and I could readily pick them out!  My friend who I hung out with would casually say “she’s into bottoms,” which always helped with the deep depression I was experiencing.  Ever so slowly the disease began subsiding and I vividly remember the day when I could have fresh fruit.

My life was fairly normal for about eight years until I began experiencing severe abdominal cramps and nausea.  I also hadn’t had a bowel movement in several days, which isn’t normal for anyone with inflammatory bowel disease!  I was rushed to the hospital and surgery narrowly averted the bowel from perforating. 

By now the Crohn’s disease had been tunneling through my colon and rectum for several years and I began making changes in my life to accommodate it.  I had to know the exact location of a bathroom where ever I went.  At a party, I was always aware if the bathroom was occupied and if it was, I became very nervous.  I could never sit through a movie or go out to dinner without having to rush off to the bathroom, several times. Shopping for clothes was anxiety provoking and I’d check to see if the fitting room was close to the restroom. Leisurely walks in the park or a road trip were anxiety provoking.  There were days when I couldn’t leave the house because I was virtually tied to the bathroom.  When the disease had destroyed the sphincter muscles in the rectum, I experienced bowel incontinence and was mortified.  I learned to carry spare underway and pantyhose with me at all times.  I’d joke that my worst nightmare was wrestling an 80 year-old woman for a vacant bathroom stall.  I stopped wearing shorts, or white pants. The walls of my world gradually closed in, until the only place I felt secure was in my own home, and in my own bathroom.

Ostomy surgery was first brought up when I was thirty-four-the entire colon and rectum was diseased and bowel resections were no longer an option-and I was horrified.  I really didn’t understand what ostomy surgery entailed, only that it was the surgery to be avoided at all costs.  Ever since I had been diagnosed with Crohn’s disease, a “colostomy” had been my biggest fear.  Doctors had assured me this wasn’t in my future; now my worst nightmare was coming true, and I felt betrayed and lied to by the medical profession.  I spent the next two years fighting the inevitable until I realized living in a bathroom, watching people’s feet go by just wasn’t what I wanted. 

Once I made the decision to go ahead with the surgery, my doctor had me talk with one of his patients who had her surgery about a year before, and also due to Crohn’s disease.  Before HIPA!  We agreed to meet at a local restaurant in two days and I went into training for this meeting.  You probably know what I mean.  The day before, I had very little food, and the morning of the meeting, just water, and a lot of Imodium AD!  I got to the meeting early and watched as an attractive woman walked in wearing a skin tight jumpsuit.  You can imagine my first thought:  where is the bag hidden!  We talked for over two hours and in spite of eating very little food, I was off running to the bathroom several times…but she didn’t “go” once!  I was impressed.  I had so many questions to ask this woman and she gave me the freedom to do so, no matter if I thought they might be too personal.  At the end of this meeting, she gave me some ostomy pouching products to take home with me and an assignment to write down everything I was angry about as a result of having Crohn’s disease.  I shoved the pouching products under the bed because at the time they were too scary to look at for long, and began writing.  I came up with 15 reasons for my anger and at the last one, “that I was tired of being an observer of life and not an active participant,” put the pen down and knew I was ready for ostomy surgery.  I was still scared, because ostomy surgery was unknown.  I knew how to deal with Crohn’s disease, knew how to handle its unpredictability.  But I wasn’t living and knew I wanted to have a chance at a normal life.

The night before the surgery, I told my parents I needed to be alone with my thoughts.  I went into the bathroom, took off my clothes, and looked in the mirror.  “Take a good look,” I told myself, “after tomorrow the front part of your body will look different, you will have a stoma.”  A moment of panic set in but luckily I’d brought my list with me that detailed my anger at having Crohn’s disease.  Rereading it calmed me and reminded me I was ready for ostomy surgery.

Ostomy surgery changed my life-but for the better.  I experienced freedom from pain, freedom from being chained to a bathroom, freedom to enjoy life, sit through a movie, freedom to be spontaneous, freedom to actually listen to people instead of constantly worrying if I’d have to suddenly run and find a bathroom or if my body would betray me.  I also realized I wasn’t embarrassed anymore.  The fears that I wouldn’t like myself after ostomy surgery, or that other people wouldn’t like me if they knew, never materialized. 

I have to thank Crohn’s disease for actually guiding me on a path I never would have taken without it.  I know, you are thinking I’m probably nuts for saying this.  My father’s words, said to me so long ago, have proven true so many times.

Once I was no longer embarrassed about having Crohn’s disease or an ostomy, I found I could be a voice for those that still couldn’t speak up.  And speak up I did.  I found I had a talent for fundraising and media relations.  I started with local television and was able to have two programs devoted to inflammatory bowel disease and ostomy surgery featured.  Not content with my local community, I persisted and successfully pitched to the Sally Jesse Raphael show, which for the first time on national television, featured people talking and discussing Crohn’s disease, ulcerative colitis and ostomy surgery!  Later, I became chair for five years of a 5-K run and walk for my local CCFA chapter.  I was able to get both newspaper and television coverage for events related to IBD.  I’ve met and talked with so many people who have inspired me along the way and who have in turn empowered me to do even more.  Without Crohn’s disease and resulting ostomy surgery as the catalyst, I would never have known I had talents in these areas.

My doctor challenged me after my story was published in a book, to talk to medical and nursing students at the university where I work and as a result, I regularly speak to nursing students at several universities in the Seattle, Washington area.  If sharing my personal story helps them to understand a patient with IBD or facing ostomy surgery, then what I went through all those years has meaning, and purpose.  Many times a student will come up and share that they, too, have IBD and hearing my story gives them courage.  This in turn, empowers me even more.

Without having IBD and ostomy surgery, I wouldn’t have had the thought of creating an IBD and Ostomy Awareness Ribbon project!  Along with a friend who has Crohn’s, we have done just that and the “movement” is gaining strength as more people find the website and facebook page!  Our goal is to get the Ribbon as we Barb and I affectionately call it, featured on GMA or The Today Show.

If you would have told me when I was first diagnosed with Crohn’s disease that I would be grateful and that it would actually give me many gifts, I would have said you were crazy.  Life has a way of surprising us and many times the things that happen to us that at the time we perceive as negative, have a way of enriching our lives—if we are open to it. 

 - Lois, http://www.ibdandostomyawarenessribbon.bbnow.org/ 

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