A Gift for my Guts

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.

Jennie

Guest Post: Lois' Story

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


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“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/ 

A Girl and her GI

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.

Jennie

" I think I can!"

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!

xoxo Shelby

Finally

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.

Jennie

Guest Post: Taylor's Story #3

I quite literally have lost count of the amount of times that I have sat down to write this last blog.

What I have determined that it is simple to write about ones experiences in hindsight, because as I began to write about my life currently I started to become vulnerable – and I, like a lot of people, spook at the thought of vulnerability. Nobody likes to be exposed.

So this is me, stripped down telling you about my life, right now - sans ostomy, living with my J-Pouch.

When I walked into my lectures in September I fit in. My clothes covered the scars scattered over my abdomen, my makeup put colour back into my cheeks, and my Percocet’s masked any post-surgical pain I was feeling. I conversed casually with my fellow classmates about our summers, and we discussed the upcoming semester. But mostly I fit in because my high anxiety and constant need to be close to a bathroom hadn’t returned which left me with a sense of relief and freedom.

I liked that I fit in, that I was in the driver’s seat again. I started the semester ecstatic with this new found control that I had over my body, until I had one day I had a pain - a bad pain I wasn’t used too. I tried not to panic. I didn’t tell my parents, I gentility broke it to my roommates that I was feeling ill, and I tried to hide it from my professors. This was very ‘2009 Taylor’. On the outside I was composed, but on the inside I was screaming. Screaming at myself for getting too comfortable being healthy - screaming at my body for a break.

This was it, this was the ball dropping.

As I laid in the fetal position in my bed with my roommates by my side I remember thinking it was all too familiar. I had been here before, unsure of what was happening to my body, hunched over in agony expecting the worst but hoping for the best. As the pain continued to get worse, I contacted my surgeon and my GI and let them know what was happening. After, A LOT of emailing back and forth, and a handful of phone conversations, uncertainty was still lingering. Uncertainty hung in the air for a while – and to make a very long story short it was determined that I had a partial bowel obstruction that thankfully ended up passing on its own. Since then I have only had one obstruction and we are hoping that I don’t continue to suffer from an adhesion problem!

This triggered something inside me, something that made me feel like I didn’t ‘fit in’ anymore. I had missed too many lectures, I had been seen keeled over in pain, and talking to professors to hand them doctor’s notes. This wasn’t something that I could cover with clothing or makeup or pain meds. I felt uncomfortable and exposed as people slowly started to unpack my complex health background that I had kept secret for so long. The longer this went on the more defensive I became when my peers asked why I wasn’t in class, or why I needed modified accommodations.

In the midst of furiously building up my barriers, a friend said something to me that make me reconsider the wall I was constructing. They noticed my constant tug at the bottom of my shirt and asked why I was so self-conscious – it’s not like they didn’t know what I had been through! I told them that I just wasn’t comfortable with the scars that speckled my stomach because they weren’t faded yet. As quick as the words spurted from my lips, my friend responded with something that changed my way of thinking. He stood back, looked at me and said, “Stop. When I see those scars, yes I am reminded of the battles that you have had to endure, but mostly I am reminded about the strength, courage and poise that you have shown throughout. I think your scars are beautiful and I would never want you to be ashamed of them – in fact I think that you should embrace them”.

So this is me embracing my battle field of an abdomen – realizing that it is silly to cover up the scars that tell the story of you, in order to ‘fit in’. What I am learning right now is that the hardest decision and the right decision are often the same thing. It might be hard to tell somebody that you have Crohn’s or Ulcerative Colitis because it isn’t very ‘glamorous’, but the more barriers we build up around ourselves the longer IBD will be stuck in the closet.

So pull your shirt up, flash the world a glimpse of that beautiful disaster of a tummy and say, “Yes I have IBD – and I am not ashamed!”

Taylor

Guest Post: Taylor's Story #2

"Waiting for the Ball to Drop"


Alright so where did I leave off? Right! So I happily welcomed an ostomy into my life on May 3 2011. When I say that, I kind of feel like I am announcing the birth of a baby, and in a lot of ways the ‘birth’ of my ostomy was a fresh start for me, a new life if you will, that is if I wanted to get REALLY sappy.
As I was lying in the hospital the night after my surgery going in and out of consciousness I felt a wide spectrum of emotions. I was relieved everything had gone according to plan, I was ecstatic to hopefully feel healthy again, I was unbelievably nervous about the stigma attached to an ostomy, but mostly I was just waiting for the ball to drop. Waiting for something to go wrong. Waiting for my body to turn on me again.

I waited, and waited, and waited…

And then I waited some more….

Weeks passed and I was still waiting for the ball to drop – for the luck I was used to, to kick in.

But it didn’t. The luck I had been accustomed to, the luck that left me more often than not in the 3% of people who experienced complications and reactions had vanished. As things kept getting better there became a point where I had to make a conscious effort to stop waiting and to start living. I had been confined to the boundaries of my house for so long, and had developed such high anxiety when I left those confines that I was terrified of actually existing in the real world. So I decided to take this as an open invitation to face these fears and start living again.

Living felt pretty neat.

The months in between my surgeries were hectic – and it was awesome! I was finally able to hold down a full time job. I enjoyed the cottage life I once lived for. I tutored two amazing kids. I went to a family friend’s wedding and actually enjoyed myself. I met new people. I finally got to experience downtown Toronto the way it should be experienced. I took a weekend road trip to Montreal with one of my best friends. I revisited the gym. I became reacquainted with my dusty Canon Rebel Camera. I danced like a maniac at Taylor Swift concert.

I lived like a ‘normal’ twenty year old girl should for, four sweet summer months.

I had become a blur until one day my dad told me to slow it down. He saw right through me…parents always do, they have this freaky “spidey sense” where they just know, ya know? And he knew that deep down I was still waiting for the ball to drop. He saw that I was terrified of becoming sick again as I frantically tried to scrounge together as many ‘normal’ twenty year old experiences as I could.

Don’t get me wrong, summer 2011 was an amazing summer – even with a couple major surgeries thrown into the mix. Yet still, being twenty years old and not controlled by bathroom locations was surreal to me, so surreal that I could not for the life of me imagine not being controlled by them post ostomy reversal. When I pictured myself going back to university in September sans ostomy I didn’t like what I saw. I pictured myself held up in my bed tiredly writing essays, dragging myself to class every day. I pictured myself crying in professor’s offices, as I had done countless times in the past. I pictured myself turning down yet another social engagement with friends. I pictured pasty, underweight, sick me.

So as I shuffled my pale blue hospital booties into the operating room on August 18 2011, I wondered what my future was going to look like. Would my body accept the J-Pouch? Would life without my ostomy be fulfilling or would I be tied to the bathroom again? Would I get pouchitis? Would I get bowel obstructions? Would I be able to successfully return to school? Would I…Would I…Would I – constantly ringing in my head.

Seeing an uncertain future is scary. It is one of the scariest things I’ve known. When what is to come turns into a vague half drawn picture it becomes easy to revert to what happened in the past and believe that is what is to come in the future. What is brave is believing that things can change. Believing that the future can hold happiness, even if you’ve been broken in the past – that’s what’s brave.

So be gutsy, be brave, and keep fighting your fight!



Taylor

Guest Post: Taylor's Story

This time three months ago going back to school in September seemed like an ambitious task as I was lying in a bed on the 14th floor of Mount Sinai Hospital doped out on morphine, marvelling over my ostomy free abdomen. I had just completed the last surgery in the J-Pouch procedure and I was excited and anxious to see how my new and improved insides were going to work. I told my doctors, nurses and pretty much anybody that would listen that in two and a half weeks I WOULD return to complete my fourth year of university. Guess where I am now? Here I sit, about three weeks shy of completing the first semester of my fourth year! Pretty cool eh?!

I’m getting ahead of myself! Let me start from the beginning. In March of 2010 I was diagnosed with severe Ulcerative Colitis. At this time being diagnosed was a great relief as I had become very ill in November 2009. I know what you are thinking – wow what a quick diagnosis! My response? Thanks mom! My mother has Crohn’s Disease and already had great GI doctors we knew we could rely on.

I did 5-ASA, Remicade, and Imuran with little success, a ton of weight loss, and one bad allergic reaction. Then one lengthy hospital stay later the ‘P word’ was a big fat part of my life…Prednisone. Ugh. One week before I was supposed to return to complete my third year of university I got out of the hospital and was solely relying on this horrible drug to keep my body from turning on me again. As much as everybody hates the moon face, the weight gain, and the unpleasant moods that come with it - I attribute being able to finish my third year to this horrid medication. So, uhh – thanks Pred!
When I think back to this time I very much consider myself in limbo. You know that middle ground where you’re not quite sick enough for people to recognize you are ill, but not quite well enough to consider yourself healthy? If you’re reading this, than I am sure you do! I spent about eight months in this limbo state, until February 2011 when I pleasantly tapered my dosage. Did that sarcasm translate? There is NOTHING pleasant about tapering. One word: withdrawal! Regardless, I tapered because I was told medically I had exhausted my options and my next best choice sat in the world of surgery. By this point I knew this was coming, and I was looking forward to saying bye-bye to Cole, my diseased colon. Cole and I had developed a mutual hatred towards one another over the years and I happily welcomed an ostomy into my life on May 3 2011!

As I battled endlessly with my own body I was also in the midst of other fights that life presents. Fights that could not be halted due to an illness – fights that were ultimately perpetuated by it. I fought a long battle to stay in my competitive, average based program at school. I fought for a three year relationship with my first love. I fought with the feeling that I was constantly ‘crying wolf’ and leaning too hard on those around me. I fought to try and be a ‘normal’ university student. I fought with the never-ending feelings of guilt, as I watched the stress that being sick brought to the people I loved the most. And I constantly fought with myself over what I could not control.

What I have learned during these times is simple: there are things that you can control and things that you cannot control. You cannot control your body attacking itself - but what you can control is how you manage your downfall. One can choose to be mope, and say ‘why me?’, or one can choose to look at the battles you are facing as growth. Don’t get me wrong, I’ve moped and asked, ‘why me?’ a time or two; but now I am at the point where I believe that accepting what has come to be and being able to see that sometimes the curveballs that life throws at you can be beautiful in the end, even if they hurt like hell during the process.



- Taylor

Guest Post: Corinne's Story

Hello everybody!  Colon Girl here from the Poopie Pantz blog at colongirl1.blogspot.com.  I was invited to do a guest post on this wonderful blog and I was soooo flattered!  It makes me so happy to know that some people are actually reading me.  It feels like a dream most of the time.  

Okay, well enough with the mushy stuff and let's get to the actual blog post stuff.  I am not going to ramble on and on about the problem I know we all have.  Unless, you don't and are reading this blog out of pure entertainment/medical reasons.  I think I speak for many when this disease needs to have more public access.  We need to talk about it, people!!!!  Because having to explain something like this to anyone who hasn't a clue what colitis or Crohn's is, is like re-living the experience.  Well, I guess it's good in the way we are being open about talking about our illness.  But I get tired of explaining it time after time to people.  

Well, I've been asked by many of my teachers throughout the years, and I'm sure you have to, a certain question. 

If you were on a stranded island what 3 items would you take and why?

I don't know about you, but my answer to that has changed like a ba-gillion times.  My illness has had a gigantic part in my "always changing decision" process, but also my age too.  I'm not that indecisive, I swear.  I think.  (Hehe...did you get that?)

Okay.  On to my answers to this question.  When I was ten years old, my answers were similar to 1. a dog 2. a CD player 3. a CD.  Yes, it was the 90's.  I had a discman.  Now, if you think about it too much your head will explode because it just does not make sense.  What happens when the batteries run out?  How will you eat?  What do you think the dog was for, just kidding!!!!  I love dogs sooo much!  I am going to be the crazy dog lady one day, instead of a bunch of cats. 

Back on topic.  It's not the logic of your answer.  The question is to make you think about what you deem important in your life.  I kinda tweaked the rules a bit, so 3 things on an island would be enough.  

You don't have to worry about food, shelter, or getting off the island.  So there are clothes for you, a house, and meals.  And your family is already with you, so you don't have to ask for them.

So my answers are now:

1. indoor plumbing/toilet

2. a dog

3. a book

Indoor plumbing and toilets go hand in hand, here, right?  Do I have any objections?  What's the main reason we have indoor plumbing?  And I could care less about toilet paper.  I'm on an island.  I'll use leaves.  When I said I love dogs, I really meant it.  I cannot live without one, that's how important they are to me.  A book because I love reading.  Also, I need something to keep me company in the bathroom.  And, no, I'm not bringing the dog into the bathroom.

What are your 3 things?

Thanks for reading this post!  Again, I'm Colon Girl at colongirl1.blogspot.com.  Have a safe and happy Holiday!  I wish you all the best!

- Corinne

Homeland

It doesn’t have a flag, or an anthem, but it definitely has a 19th floor and IV poles and mechanical beds. Oh yes, back to the homeland. 

I would say that I’d been doing so well, though I fear that’s a lie. I had been staying out of the hospital for a month, putting one foot in front of the other, going to classes and being present in my life as best as possible. But as of Monday evening, it was time to head back to the homeland.

As I was throwing out some garbage before I hailed a cab to the hospital, I ran into my RA, and she asked how I was doing, to which I said, “Going back to my homeland.” She dropped her keys and gave me a no-way look. Yes-way. Oh, yes-way indeed.

But this post is not about me in my homeland. No, it is about someone I met here. 

In the ER, I had this lovely nurse, whom I’ll call Cleo. When she gave me some pain medication, I knew it wasn’t enough for me to get relief and so I asked if I could have more, followed by an explanation that I was not a druggie and that I had so much tolerance that I needed more pain medication but I knew how it sounded. She shook her head and said it didn’t sound like anything and that she completely believed me and that I had a chronic disease and needed it. Cleo was so nice and put me at ease when I was in so much pain. Then she told me her story:

Cleo had been feeling unwell, just general under the weather and GI boating and discomfort. Her doctors told her she was fine, but her symptoms persisted. She was getting married, and after the wedding her symptoms were even more uncomfortable and she went to the ER and demanded a CT scan. Lo and behold, they found it. It was a 20 pound tumor growing in her belly. The take away from Cleo’s story that she kept repeating? “I knew my own body and I knew something was wrong, I was tired of not being listened to - something was wrong.”

Being ‘in the homeland’ can suck. But there are also lots of lessons to be learned, and sometimes it helps to have the most important lessons reiterated by someone in the healthcare profession.

Jennie

Dandy

I wanted to share an interesting theory that I was taught this week in my psychology class. 

The questions begs to be asked, are you a dandelion or an orchid?

This is an odd question - but very meaningful, I promise. The theory goes as follows: a dandelion will flourish anywhere, grow anywhere - be it the side of the road or in a well-tended garden. An orchid, on the other hand, will only thrive in the very best of circumstances; the right light, the right amount of water, the right touch. This is related to children - and people in general. Some of us, no matter what happens, will push forward, fight, and move on - thus, a dandelion. And some of us need more help - i.e. an orchid.

I think there’s a difference between who we want to be and who we are. But let me clarify: who we want to be could be anything, and we have the power and the dreaming-room to make it happen. Who we are is everything we are genetically and biologically, the things we cannot change about ourselves like our temperaments and diseases. There is no shame, and in fact should be pride, in honoring who we are to get to who we want to be. 

Where am I going with all of this? If you’ve classified yourself as an orchid, then ask for the help when you need it and make sure you get the right amount of sun, water, and love (and you dandelions out there need it too!). It can be a struggle with a chronic illness to know when to ask for help, because at least for me, it can seem like we’re waving the ‘help-me’ flag all the time. But think about it this way, you may be hesitant to ask for someone’s help, but you’d probably be the first to give it.

Jennie

Enough is Enough is Enough

When I go to the doctor’s, I always bring along my trusty little journal. All of the medications I’m on, the tests I’ve had, and the names of the doctors I call my own are scribbled down in my incoherent cursive writing. It’s so helpful to have everything written down and be able to reference things, but I think of the journal more as my ‘Yes-we-will-be-equal-partners-in-this-decision-today-thank-you-very-much’ cue to whoever I’m seeing on that particular day.

I’ve had it up to my ceiling with these past few months. I’m only almost a year and a half out of my surgery and I’ve had too many obstructions to count; recap of Jennie’s summer - blockage every 4 weeks, every 3 weeks, every 2 weeks, every week... you get the idea, hence my chronic state of life at the moment. I’ve stayed in school and kept on top of work and done my very best to honor my commitments and see my friends and have my life. But who am I kidding? This isn’t the one that I want to be living, I want certainty and I want my body back.

But enough is so enough. I have a chronic disease, and no matter how much I blog or talk about it, sometimes I’ll wake up and before I remember where I am or even perhaps who I am, I think, is this really my life? Do I really have a chronic illness and an ostomy? Is this really what I have to fight each day? And we all know the answer is yes, but sometimes that doesn’t make it any easier to face my reflection in the morning and try to carry on in spite of the hand I’ve been dealt. It’s perfectly fine and good and necessary to get upset and cry - i.e. my last GI appointment when I cried for 3 hours followed by breaking down in the middle of the pharmacy - but here is my pledge to myself, I am going to do my best to put my chin up and move forward and get what I want out of my life.

I recently heard this quote: “In life, you don’t get what you deserve. You get what you negotiate.” And at first I was like, Wait a moment... but when I thought about it, it made a lot of sense. To me, it says that if I want my life, then I have to fight for it, want it so badly that I can taste it, and make sure that I’m heard. That’s a tall order to ensure I’m listened to by doctors who are decades older and who think they have me all figured out. But unfortunately, I’m the only one who knows what it’s like to be in this body of mine.

I heard another quote recently, “What’s the difference between school and life? School teaches you a lesson then gives you a test. Life gives you a test then teaches you a lesson.” So onward and upward, the battle continues. My armor is chipped and the paint may be peeling, but maybe that makes it all the more beautiful.

Jennie

The never-ending battle to justify

I hate that this disease is so invisible.  I hate that on the outside I look like a healthy, happy, well-adjusted girl, while on the inside my body is fighting the battle of its life, both physically and emotionally.   Well really I guess I just hate this disease.  

They say that stress really exacerbate IBD and I can now say that I agree completely.  I hate that I feel the need to explain the way my pain feels and describe my complete and utter exhaustion right down to the nitty gritty in order for people to even briefly understand, or act like/pretend that they do.  I hate that I feel guilty for not having my usual pep and excitement.  I feel bad for needing to sleep or cry and not being up to my usual energy levels. I am a fun loving, well rounded, happy girl, with many friends ( some say too many) but find that when I am not well or when too many things are going on in my life, I feel ALONE, and I want alone. 

I am a student teacher and so excited about a career teaching students and forming the foundation of knowledge they will use for the rest of their lives.  I am proud of this career choice,  and the steps I am have taken and hurdles I have jumped to get myself here but the thought of getting up and spending  another day in a classroom is terrifying to me right now. The idea of 5 more weeks (23 more days including days off to see specialists) of practicum is so overwhelming to me when I am so unwell and utterly and completely exhausted to the point of tears.  

I know I can do this, I know I am strong enough and I have the support, but sometimes this disease is a sneaky reminder of how delicate and wonderful the good times are.   I know tomorrow is a new day and I know to take each week one day at a time, one hour at a time, even one moment at a time, but I, like Jennie, am a planner.  I hate that this disease gets control so I am going to try my very best to take that back.  I can try to fake a smile and put one foot in front of the next.  As hard as things seem right now, this will be my only salvation.  So this is what I am going to have to do.  I need to trust that it doesn’t matter if people understand, what matters is that I keep on fighting.  This disease will not shatter my dreams. Try as it might I can not and will not let it hold me back… but I can still hate it!

Shelby

Uncertainty

Right now, it seems like so many things in my life are up in the air. As I try to move forward and complete homework and see friends, I move back and forth between the medical world and the real one as my bowels continue to present issues for me. I continue my home TPN, try to keep my chin up, and push away my anxiety about my uncertain near future.

This past Tuesday, I trekked to my GI, butterflies in my belly, medical notebook in hand. It felt like I was holding my breath, like my future was being held by doctors and unknown to me. I was called in to a room and eventually the doctors came in and my heart jumped in my mouth. Soon the questions hit an emotional spot and I began to tear up, and soon, full blown sobs. I tried to fight through the tears and speak clearly, but I was devastated and exhausted and in pain and had no time left for pleasantries. 

I need bloodwork, and so at one point, we ‘took a break’ and I was whisked off to get poked. The lady was very nice, she rubbed my arm and said, “Don’t worry, he’ll fix you.” I began to cry harder. Even though I’m sure she meant it with the best intentions, it’s just not something someone should say to a chronically ill person. No one can fix me, not really, and that’s too much to put on anyone. 

I hate taking one day at a time. I’m a planner, I want things organized, things ready, things set. But I am doing my very, very best to take one day at a time, which is a work in progress. It’s all I can think to do when the future is as blurry as mine seems to be, one foot in front of the other, a big smile, and belief in myself and my future - that’s all I can do.

And I hope that one day, all of those little steps and big smiles will do the trick and I get my future back.

Jennie

Happy Halloween everyone!  But better yet, Happy Awareness Month tomorrow.  As most of you know November is IBD awareness month and we at the gutsy generation are so excited to continue spreading awareness about these crappy diseases.  We encourage all of you gutsy folks on facebook to change your profile picture to a picture of gutsy for the month of November to get people talking and get our mission and ideas out there.