Saturday, December 24, 2011
It seems as though I chronically wish for surgery at any given holiday time, but then again that’s probably because I have a chronic illness.
As relieved and excited as I honestly am to be having surgery and, knock on wood, to be all freed from obstructions, I am admittedly depressed that I won’t be spending the break with my family back in Nova Scotia. Even if it means snow and chilly weather, I want to be able to cook with my Mom and plop down on my sister’s bed to watch ‘Grey’s Anatomy’, take the dog for a walk and watch a movie with my Dad... and do something with my older brother. Instead, I spent yesterday floating in a pool in Florida, squinting in the sun. Complain-worthy? Probably not, and yet here I am complaining. Maybe it’s because of the absence of my whole family, my surgery in about a week and the long recovery stretching out in front of me.
Hanukkah this year came right around the time of my school break, and yet I won’t get to take out my menorah and watch the lights glow with my family. I guess I’m just a little tired of giving up breaks to have surgery, especially twice within 2 years. Oh well. Life happens. Crohn’s happens and I must try to maneuver where I want to go.
So lately I’ve been thinking what would be the perfect gift for my guts, besides surgery. I guess in an utopia, Crohn’s wouldn’t exist and I wouldn’t be writing this blog. But that’s unrealistic and doesn’t really accurately portray how I feel, after all I don’t think I’d trade in my bowels for anyone else’s, I’ve learned too much about myself to write off the experience as one I’d want to trade in.
Perhaps that’s the gift. Life and appreciation, those moments in between when I feel like I’m in exactly the right place for me.
Happy holidays to everyone. To life, to tomorrow, to everything you’ve wished for.
Tuesday, December 20, 2011
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/
Sunday, December 11, 2011
This blog post is inspired by my Dad, who I had copied on an email to my GI, to which my Dad replied, “Nothing like the exchanges between a girl and her GI... maybe a new line of Hallmark cards”. The thought made me laugh out loud - so very true.
There are a few essential things in life - food, water... a GI. But not any GI, a good GI. I had a theory for a long time that in order to be a GI, you had to be butthead. No one explained to my 12 year old self why I had to drop my pants for an anal exam when they said go, it seemed invasive and private and so completely abnormal. I desperately wanted someone to sit me down and say, “Jennie, this is weird and different and this is why it is important to your health....”, but no one in a white coat ever did.
When I was a little girl in elementary school and would walk by the staff room, I always thought that students should be able to enter since we also worked there. Similarly, when it comes to the hospital, it is second nature, a second home. I used to think - before I was sick - that being in the hospital was the worst of the worst. But now, it’s just so mundane and ordinary. A friend laughed at me this morning at my casualness in saying that I’d been in the hospital this past week with yet another obstruction. I work through my homework and my life from the hospital bed, in between blood pressure checking and watching television before bed.
This last time in the hospital, I was completely uninterested in their theories and thoughts, I’m headed for surgery in the next month and that’s all I care about, nothing is going to stop me. And yet, these doctors insisted that I was wrong, wouldn’t let it go, and I couldn’t decipher the reason, if not just to make me suffer it out and ‘put me in my place’. As kindly as I could, I tried to tell them that I didn’t care what they thought because I knew my body, but they could have cared less. It’s times like these when I count my lucky stars for my amazing and gentle GI, who’ll call at 9 PM to see how I’m doing and even text me. Sometimes I can feel all alone when medical personnel (not including nurses) seem to alienate me. It makes having that great connection with a doctor all the more crucial, someone who gets you and understands you and will fight for you.
Everyone deserves a person. And everyone deserves a good GI. It’s your right, and never forget that.
Monday, December 5, 2011
Time to give up the guilt
Hello all, I'm sorry it has been a while since my last post so I felt it was time I should check in with my gutsy crew! Over the past few weeks many tears have been shed and only a few hairs pulled from my head. Through all of this however, I can say that I am truly grateful! Although life does not always seem to be going my way, ok lately most of the time it seems exactly the opposite, I am still so grateful for the life I have been given. They say it’s not what you know, but who you know. This quote has not reigned more true for me than it has in the past few years. For those of you who don’t know me, I was diagnosed with severe crohns disease in 2008, and have been thankful for every healthy day I have had since. Although the beginning of my journey was not a smooth one, misdiagnoses, endless medications and a very serious, very unrelated brain surgery a year following this first very life altering diagnosis, I am so grateful for what this journey has taught me so far. And that is that I AM STRONG. I am much stronger than I would have otherwise ever given myself credit for. Having this disease, as well as my other speed bumps has taught me that, with the proper tools and support, I can do anything that I put my mind to,
For years I have struggled with the idea of support. I struggled with the idea that I cannot do this all on my own. I felt weak when I asked for help, or when I needed certain accommodations to strive and succeed. Recently I am beginning to understand that accepting and acknowledging the supports that are provided does not demonstrate that I am weak, yet it proves the very opposite. In one week I will finish my degree in teaching. I will be a certified BC teacher and finished my final practicum that 3 years ago, I was certain I would never be an option for me again. Yet here I sit, days away from the completion of my second degree, although some days hanging on by a thread, I have made it thanks to the realization that it is ok to accept support, and acknowledge when it is needed. I am the most fortunate girl to have the amazing support I do, both from the CCFC and the amazing friends I have met and from my amazing family and friends who have been with me on every step of this journey. I have been fighting this battle using the words of The Little Engine That Could “ I think I can, I think I can, I think I can” and just finally I am beginning to believe it!
Friday, December 2, 2011
For the past few months, I feel like I’ve been standing on top of a mountain screaming as if no one could hear me. Sometimes I would think I’d have someone’s attention, only for this dream to crash and burn right in front of me and leave me a little more hopeless than before.
I spent the past week in Florida with my grandparents for American Thanksgiving. I was so relieved to have made it to the end of November and gladly took the chance to fly down South, bake in the sun, and escape some of the cold that is infiltrating Boston. I had been in the hospital for about a week and had suddenly sparked the attention of a local surgeon. Somehow my “actual obstruction symptoms” (his words, not mine) were surprising and he began to believe me - or at least begin down the path - that a problem was most definitely afoot. He lamely offered to have a look inside, but did so with an arrogance that suggested I was most probably wrong. Well, we’ll call that my plan B. But I tried to push this out of my mind as I boarded the plane and ascended into the cloudy sky.
I arrived, located my grandparents, and away we went in their car through the palm-tree lined city. On Thanksgiving, we went over to their friends’ house for dinner - where all of their friends have some direct family member with an ostomy, which makes it very appropriate dinner conversation. My PICC line had been pulled and without TPN, I was on my own to nourish myself. I only ate a small amount, but it seemed to sit in my throat, and before dessert, I had to excuse myself and threw up the entire dinner. I wiped my eyes and rinsed my mouth and went back to the table like nothing had happened.
But something had happened, only I was waiting for Monday to discuss it. On Monday I was going to a local surgeon who had written a paper about adhesive small bowel obstructions and one of the leading colorectal surgeons, and besides I didn’t want to worry my grandparents anymore than they already were in the interim. I had had my GI’s secretary fax over my medical records (and I’ve only been with this GI for under a year) and apparently there were so many pages that the hospital told them to stop faxing things because it was tying up their fax line. Monday came, and I was nervous. My parents were nervous. My grandparents were nervous. There was an overwhelming sense that my fate was in the surgeon’s hands, as ominous as that sounds. We drove the hour to the clinic, each worrying in our own heads about what might transpire.
By the time I got there, I had resigned myself to the fact that he probably wouldn’t do anything and at least I had my apathetic surgeon back in Boston ready to slice and dice. In the exam room was a sign that read, “Have you hugged your colorectal surgeon yet today?” Finally, the surgeon walked in, a famously tall man, smiled and shook my hand. I began to tell him my medical saga and within 30 seconds, he turned to his resident and said that he thought loops of bowel were stuck together, i.e. adhesions. I was - in a word - ecstatic. Finally, I thought, someone is hearing me. They did a quick exam, and then I took out my medical journal to show him the list of all of my obstructions. He was shocked and thought this was terrible and needed to be fixed ASAP. I couldn’t have agreed more, and before I knew it, he was writing orders and scheduling surgery. My head was spinning, it was happening so fast. I was so relieved I didn’t know whether to cry or hug him, though I did neither and somehow remained inside of my skin.
I left the clinic with a surgery date a month away and this all-encompassing sense of hope and relief that I hadn’t felt in months. It is insane that I feel this way over surgery, usually people (sane people I might add) feel this way over not having surgery. But this is what I wanted, so farewell apathetic surgeon, farewell obstructions, I don’t need you anymore.
This is what I’ve learned, which in a small way I think I always knew, but this just proves it to myself and hopefully to someone else: the end is not the end unless you decide it is. My doctors wanted to give in and I fought, I researched on my own, I found this highly respected surgeon who met with me and within 15 minutes decided what surgery I needed. It is cause for celebration. My life is my life and I will choose how to live it, it will not be lived by the prescription of a doctor.
For a long time, I lived day to day, week to week, waiting for the inevitable obstructions to hit and knock me off my feet. But soon, after the surgery, after I recover and am back at school, I’ll have my life without the anxieties of obstructions. Finally.