19 Going on 20

If it were up to me, I would move my birthday. As it is, I was born a few weeks early, a little too eager to come into the big wide world. I was supposed to be born in August, but instead held fast to the end of July and was born on July 30th.

Every year on my birthday - without the help of an alarm - I wake up around 4 AM, which is when I was born. Perhaps it’s complete coincidence, and perhaps I wake up every night at 4 AM and don’t bother to derive significance, but on my birthday, I’d like to think it means something. Having a birthday used to feel like waiting for the tooth fairy: I knew it was coming and it was magical and I felt at once older and bewildered and special. I always liked having my birthday in the summer, it is my favorite time of year and I would never have to go to school on that day. But in the past almost decade since my diagnosis, my birthday seemed to mean less or maybe mean more of a conversion into the ‘sick’ me. Either way, it lost the magic that kept me up at night dreaming about what I would wish for over the candles.

I spent my 16th, 17th, and 19th birthdays in the hospital. Last summer before my 19th birthday, I had wished on every fallen eyelash that I would have my surgery before my birthday. But I would have to settle for August 10th, and so I was left to celebrate the day in the hospital. It was that day that my doctors urged me to try the pain medications, and I reluctantly did so. But shortly after the first injection, my eyes went wide and my belly relaxed and the world was a little hazy and a little more okay. Full confession: I was so drugged. And it was incredible - people in and out all day long with gifts, I sat there doe-eyed and largely oblivious, and some random people even came in with a guitar and sang happy birthday. As a disclaimer, I was very, very drugged and so all of these memories may be completely fictitious, however, they succeed in amusing me now.

I joke - but am also completely serious - that if you want to get gifts (and good ones at that) for six months, have your birthday in the hospital followed by getting an organ out. An appendix will do, but I of course went for the colon. I was lucky enough to receive many beautiful and thoughtful gifts, but all I wanted was an ostomy.

When August 10th arrived, it was dawn and sunny, unusually quiet and still. My belly fluttered with millions of butterflies, like it had done years before on my birthday. As melodramatic as it seems now, that day was my saving grace, it was my countdown, it was really my birthday.

If it were up to me, I would change my birthday to August 10th. But on July 30th, I will be 20 years old, and with leaving my teenage years behind, I hope I will leave the majority of my Crohn’s roller coaster there too. I am so wildly appreciative for the past 12 months, every good second and every bad one, that I cannot fully put it into words. This year has given me the purest opportunity to know firsthand that I can overcome anything, that my life is mine and that it can be wholly wonderful.

To the person I was a year ago, you are strong and you can do it. To the person I will be in a year, never doubt yourself and follow your gut.

To the person I will be tomorrow, happy birthday.

Jennie

#1 Tour for the Cure: Pebble By Pebble

They say Rome wasn’t built in a day. You have to move a pebble before you can move the mountain. When the lofty goal of IBD awareness and ultimately a cure is at stake, it can be daunting to even know how to start.

Of course, we have to start somewhere. I recently had the absolute pleasure of meeting Andrew Misle, a man who has started something so amazing and contagious in spirit that it is hard to translate my excitement into words. Andrew exemplifies virtually everything that I strive to be - passionate, dedicated, unstoppable, resourceful, resilient, purposeful, genuinely present in his life, and unfailingly charitable and compassionate. Andrew is not an incredible person because of his Crohn’s, rather, he is an incredible person who has used his experiences with IBD to demonstrate his indestructible spirit. After being misdiagnosed several times, Andrew was finally diagnosed with Crohn’s Disease at the age of 26. Having lived with Crohn’s for seven years, he became very ill in March of this year and found himself in the ER on the opposite side of the country from his native Edmonton. Knowing that he is the sole expert in his body, he refused to be sent home according to the first doctor’s advice and insisted on a CT scan. Lo and behold, he was right about his body and a surgeon came in and informed him that his bowel had perforated and he would be having surgery in the next hour. Having 60 minutes to spare between life before an ostomy and life afterwards, he phoned the people who needed to be told and thought about how his life would change.

But as I’ve already said, Andrew is unstoppable. The second week after his surgery, after fending off complications and tubes upon tubes, he was determined to take longer walks and meditate every morning, as per his yoga practice. Inspired by the stories he had been given about others with ostomies and IBD, Andrew decided that he too would be instrumental in raising awareness in his own way. And what better way than to travel across the country on a motorbike teaching yoga?

Answer: no better way. What I love and admire about Andrew’s story is that not only is he inspiring, but he is inspired, knowing that he can make a difference as exactly who he is, doing what he loves most. He has already begun his insanely incredible journey across the country, teaching yoga, IBD awareness, and inner strength to everyone. “Andy’s Yoga Tour For the Cure” will be coming your way, and if I were you, I’d like it on Facebook and have my yoga mat ready.

Andrew is going to make a difference for one main reason. He is passionate and is truly going to accomplish anything he sets his mind to. As an amateur yogi and an ostomate and IBDer myself, his journey and mission are so awe-inspiring that I honestly cannot find the words. To go from being on an OR table having an emergency surgery to a downward dog raising awareness in under three months is absolutely unbelievable and empowering. I am honored to have met him, and humbled to be able to support and cheer him on as his yoga tour for the cure continues.

You can’t move a mountain until you move a pebble, and you can’t move a mountain all by yourself. Instead, we must all take a pebble and move the mountain together. So here is what we are going to do: as the tour sweeps across North America this summer, we are going to follow his events and journey, share pictures, and even interview Andrew with questions that we as a Gutsy Generation come up with - so think some up and leave them as comments or email them to us at thegutsygeneration@ccfc.ca. We’re going to share our megaphone so that his phenomenal story and mission can be shared and supported.

As Andrew puts it, the sun is a little brighter, food a little sweeter, and life a little grander when you’re surviving with IBD. To borrow one of Andrew’s favorite quotes, “Experience is not what happens to a man. It is what a man does with what happens to him.” - Aldous Huxley.

Be excited: something amazing is happening right here and right now. Let’s go to the park and do yoga and raise awareness for the cure when the tour comes to our cities. Let’s raise our voices about IBD. Let’s find a cure. Let’s do something because we can.

Let’s move that mountain, one pebble at a time.

Jennie

Review: “Tales from the Throne: Living with Crohn’s disease and ulcerative colitis” Laughs and Learnings from the Gutsy Generation

Find out more about "Tales From the Throne" by clicking on the link at the left hand side of the page.

Review written by Dr. Brent MacDonald

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Most folks reading this review either have or know someone who has IBD. Those folks would do very well indeed to read “Tales from the Throne” (a title rich in irony and one of the best puns ever!). Indeed, many of the stories in this excellent collection revolve around getting one's tail either on or off a throne - people who design and locate public washrooms would benefit from reading the humorous/ horrifying stories of people with IBD in their searches for appropriate facilities under duress.

The collection of stories from a wide range of individuals who have Crohn’s or colitis elicit alternatively laughter, tears, and, ultimately, a sense of pride. Had this book been around when I was diagnosed in the mid-1980’s, I can assure you that it would have been dog-eared from being read and re-read. (On a side note, I’m not sure if the editors planned it this way, but the stories are just about perfect length to read in a good – uhm – “sitting”). There is fear in almost every story – fear of being ill, fear of having a chronic illness, fear of being caught without a washroom, fear of pain. But, more prevalent, is the overarching theme of strength. The authors of each story, whether they mean to or not, describe a great internal strength. This strength extends to those who support individuals with IBD, particularly family, friends, and health care providers. However, it should be noted that there are also a great number of stores of frustration with these same people, particularly related to beliefs – prior to diagnosis – of malingering; one of the challenges of IBD seems very much to be the non-specific nature of some of the symptoms, which can lead others to assume that the person with IBD is either faking or is stressed out/ anxious.

Not all of the stories are “happy” in the traditional sense (Hollywood would have written a cure for us!), but each vignette provides perspective. It seemed to me that perhaps there might be a wider audience for a set of stories of struggle and so I have placed my copy of the book in the waiting room of my office, where I work predominantly with adolescents and young adults who have a variety of psychological and educational challenges. While most of them do not have IBD, it’s amazing to see them pick up the book out of curiosity (again, give an award to whoever titled it!) and then ask why it’s in my office. As I explain, more often then not, they seem to understand perhaps not the disease, but certainly the experience of not being believed and the value of support. And, kids being kids, anything to do with “bathroom humor” is greatly appreciated!

I could not recommend this book any more highly. The contributors should be very proud of what they have collectively accomplished with this publication. As a long-term “Chronie,” I learned a lot about taking pride in having the disease…if having Crohn’s means that I can in any way be associated with folks like the contributors to this book, then I am proud to have the disease!

Jennie From the Block-age

There’s nothing like an impromptu scope to kick-start a weekend.

Did I just say that?

My GI, wanting to get a scope in before the summer’s end, conveniently found a cancellation for this afternoon for an ileoscopy. Granted that the test is quick and requires severely less prep than a colonoscopy, I shouldn’t be complaining. And I’m not complaining, more laughing at myself.

You see, today seems to be GI day in my household. My Mom is going for her first colonoscopy in the morning. She’s been a good sport and recruited the family expert - moi - to help her prep for the procedure. I only have memories of pain when it comes to the prep, especially those hated Fleet enemas, but I suppose if you don’t have an inflamed gut it’s not going to be as painful as it will be uncomfortable. Nonetheless, I think the take home message is ‘the family who get scoped together...’, well, you can finish that sentence!

When I was in the hospital a few days ago, I asked for a cup/urinal/something to empty my ostomy output into for them to measure, always a fun endeavor. I was handed an oversized metal measuring cup, which wasn’t overly handy but did the trick. The nurse labelled the cup “Jenny from the block” (notice my name was spelled wrong!), but I thought it was funny. My brother cleverly tweaked it to be “Jennie from the block-age”.

By February of this year, there were already Crohn’s ulcers bubbling in my reduced GI tract. I cried when they told me and called a good friend in a fit of pathetic exhaustion, momentarily unsure of why I had just endured a very painful summer, a massive and permanent surgery, if there was still disease. Clearly I was forgetting the ‘chronic’ part of Crohn’s, but it felt like a shot to the heart after such a triumphant - even if that was momentary - return to the world of the healthy. The only saving grace has been that the inflammation is too mild - I’ve never heard that before - to treat, and while I anxiously wait for the spark to grow into a massive fire of a flare-up, my GIs (in Halifax and Boston) have agreed to scope me regularly to check on the progress of the ulcers that dot my small bowel.

The GI said it takes five minutes and that I don’t need sedation. I sheepishly looked at her and said I’d prefer to be knocked out. For my money, the less pain the better. Knock me out and I’ll be happy as a clam... or at least as oblivious as one.

I often joke that the best part of having a permanent ileostomy is that I don’t have to do scope preps - and, in some ways, it’s totally true. You couldn’t pay me all the money in the world to go through that experience again, thank you. This will be my third ileoscopy, with a fourth rounding the corner in October. The last time I had one, the GI said he was nervous because he gave me so much sedation - the question becomes knock out a horse or sedate a girl who’s had way too many procedures.

My insides - and my Mom’s - will be nice and shiny and clean heading into the weekend, and let me tell you the one thing we both agree upon right now: we can’t wait to have some real food!

Jennie (+ Mom)

+1

Rewind and pause: the theme to my past week. But this time, the cosmic powers that seem to be at play have outdone themselves and rewinded back a year.

As of Friday, I was knee-deep in another blockage and trying stubbornly to stick it out at home. After my last major battle with the ER with my blockage a month earlier, I informed my Mom that I would not be leaving unless I would circumvent the whole waiting process and skip right to being hooked up to fluids and pain medications, that is, if I wasn’t denied them. Luckily - if luck can ever be a factor - my GI was the Attending on call this past weekend, and when the time came on Sunday, she helped whisk me through the process. Yes, I still had to wait the two hours in the ER. And yes, my GI (thankfully) believes in pain medication and listening to her patients, and I was well hydrated and well doped with drugs before the night was through. But to my Mom’s chagrin, I still had to be admitted for a couple of nights.

Because the Halifax hospital system is so perfectly worked out (sarcasm implied), the GI unit is in the old building, but the ER is in the new building, so an ambulance had to take me from point A to point B. By this point it was almost midnight, and I convinced my parents to go home instead of driving over to the other building for a minute. I was loaded into the fancy stretcher and whisked away. The paramedic looked at me and grinned, “You pretty glazed right now aren’t you?” Answer: you know so.

Home sweet home... or at least the non-air-conditioned smelly GI unit. Memories began to flood back of me on this floor a year ago, right before my surgery. Then we turned into my old room and lo and behold, my old bed was waiting for me. I was almost laughing, it was a little ridiculous, almost perfectly one year later and here I was again. It hadn’t changed - it still smelled, those stained curtains still fluttered between the beds, I still had roomies. After being unloaded from the stretcher and attached to an IV pole, I had to go to the bathroom, and when I got back, a nurse was standing at my bedside and she smiled and said, “You sure know what you’re doing” to which I replied “I hope so!”

For as optimistic and positive as I try to be, let me be clear - last summer sucked. To this day I’m amazed and a little shocked that I survived the experience. It was single handedly the most painful experience of my life and being back in that room was very surreal. I woke up one night around 4 AM and couldn’t remember where I was - if it was last summer, what hospital I was in, how old I was. One year can make a huge difference, but it is also only the beginning.

Sometimes I’m so eager to fast forward to feeling well and having my blockages solved, or having my degree, or just being older - but I think there’s something to be said for living in the moment. No rewinding, no pausing, no fast forwarding, just here and now and enjoying it.

What goes up must come down. What gets blocked will open up. What hurts will heal - for the most part. And life is happening now, so I’m going to do my best to live it that way. My story is just one of millions, but if I can pretend that this blog is meaningful to others, then I hope it’s this - you are worthy, you know your body, you can survive anything, you are powerful, and you can make a difference, make a change, make a contribution to the world right now as exactly who you are.

Right here and right now.

Jennie

Pretty Little Lies

“How are you?” Response: Silence and the sound of crickets.

When I feel fantastic, I will answer as such. But when I find myself in my monthly blockages and feel like my guts are being put through a blender, I’d rather find a different way to respond. I answer with the usual “fine”, but was recently caught in the middle of health lie when a friend responded, “But aren’t you sick?”

To begin with, it made me laugh. I’ve never had anyone ever ask me that. Second of all, I wasn’t sure if it was a general comment - i.e. “You have Crohn’s so therefore you must be sick all the time” - or if he knew that I wasn’t feeling great right this instant. Either way, I answered with a casual ‘Oh yes I am, but I’m getting through it.’

It both amazes and appalls me how my body functions. For the vast majority of every month since my surgery 11 months ago, I feel really amazing and can do anything I want to, including my now daily half an hour run. I have energy, I have physical strength, it’s unbelievable. But my monthly blockages from adhesions plague me, as they do few people with such regularity, and I find myself tangled in my quilt covers once a month both dazed and confused. This time I’ve refused to trudge back to the ER in great fear that I will wait impatiently for hours just to have my ideas rebuffed and be sent home without help. So here’s to riding it out at home: a stupid idea, but the only one I will stubbornly settle for at the moment.

I will be just fine in a few days, and as I pound the pavement in a future run, this recent blip will be a moment of the past. But for right now it’s painful and frustrating and confusing and driving me crazy. But I will survive, it will get better; I just have to hold on and ride it out.

Jennie

Biker Chick

I don’t think I’ve ever aspired to be a biker chick.... until recently.

Although I’m convinced I would fall off the bike - whether or not I was riding or just hanging on for dear life - a recent CCFC event has made the prospect of the wind (and bugs) blowing in my hair a little more appealing.

Every July, the Halifax CCFC chapter supports the “Cruise for Crohn’s”, a motorcycle rally to raise funds and awareness for IBD and the CCFC. In stark comparison to the family-oriented HnW, “Cruise” is a true-blue motorcycle event. Anything stereotypically biker chic, you’ll see - the leather jackets, the bandanas, and even those boots. But these guys (“We’re XL” as one guy described the group) are serious about two things - 1) motorcycles 2) supporting the CCFC.

I was working selling the t-shirts, hats, and sweaters for the event. I’ve been dying for a t-shirt for the past couple of years, and finally bought one myself (My sister later dubbed it my ‘thug’ shirt as it has lightening bolts down the sleeves). The bikers swarmed the table and sold us out of all of our XL apparel, and were even quick to ask for Gutsy tattoos on their cheeks. It’s amazing to see so many intense motorcycles in one place, let alone so many intense motorcycles for a Crohn’s event.

I had to promise my parents that I wouldn’t ride off on the back of a bike. Promise kept, but who knows, with my “Cruise” shirt, maybe a motorcycle is in my future!

Jennie

PARTICPATE: New Online Research Survey for Crohn's and Colitis Patients

Hi Gutsy guys and ladies :)

I just wanted to update you on a new survey put out by the CCFA (Crohns and Colitis Foundation of America).

Here is the info:

https://cgibd.med.unc.edu/ccfapartners/index.php


Hope everyone is doing well,
hugs,
Ash

Beachy Keen

The biggest argument I had - and continue to have - with my Mom is over bathing suits.

It goes a little something like this:

Jennie: “I want to wear a bikini!”

Mom: “I don’t think that’s a good idea.”

As I stood in the change room with a bikini on, my Mom beside me, and my ostomy hanging out, I began to question my comfort with the bag. My Mom insisted that it would make people feel uncomfortable and that it would be inconsiderate to wear a bikini. I insisted that I didn’t care how it would make other people think, I was proud of it and I wanted to wear a bikini. The entire event ended in tears as I stripped the bikini off and any hope of wearing a two piece in the summer. But the more I thought about it, the more it gnawed at me and bothered me. I was right in being proud of the ostomy, it was my decision and it had saved my life. So what if the outcome was wearing a bikini with a bag, the other outcome would have been me not here at all. And in my mind, that’s something to celebrate, and if I want to celebrate it in a bikini, then so be it.

There are lots of people who wear inappropriate things to the beach. Way too teeny bikinis, old men in speedos, but we don’t consider an amputee or a cancer patient a faux pas. Then why do we - or at least my Mom - consider an ostomy a no-no? I would understand if I wore a see-through bag where you could see my stoma, yes of course that wouldn’t be the right thing to do, I’m not going to force feed my stoma to others. But an ostomy where you see nothing but the fact that it’s adhered to my abdomen, well, I don’t see a problem.

The first time we went to the beach this summer, I wore a black one-piece suit. And you couldn’t see a thing, even when the bag was getting full. I felt great and empowered, but wished I was in my beloved two piece. The second beach outing, I donned my bikini with boy shorts hiked up over my bag (which is just high enough to merit hiking). In a word, I was thrilled. I have very few scars since my surgery was laprascopic, and they are barely visible anyhow. When we got to the beach and I took off my cover up, my Dad looked at me puzzled and said, “Wait, where’s the bag?”

I want to go to the beach and wear a bikini and have a good time and be proud of my body and what I’ve been through. Sometimes I have a bit of a “bite me” attitude - aka I’m darn well going to do what I want and I don’t want to hear anyone say otherwise. I wore my bikini with my ostomy, so there. And if I can change my Mom’s mind, then anything is possible.

The best thing you can do for yourself can only be decided by you, not for you. There are a hundred million different paths to choose because there are a hundred million opinions - you are entitled to yours. Be it wearing a bikini with an ostomy or your own undying ambition, you can do it, really you can.

And I know I’m going to do what I want to do, it’s a ‘shore’ thing.

Jennie

Blog-iversary

It’s my anniversary.

No, not with a boyfriend, or a job, or even a disease. Mine is with a blog.

Last year on July 5th, the YAC started the Gutsy Generation blog - mainly emailing it out to each other and our parents. The goal was admirable, but lofty - have a youth IBD voice and share it all around the country. This post will serve as the 149th snapshot of our lives with IBD. The first month, a little over 400 people meandered through our site. Now, about three times that amount read our posts every month and so far we’ve reach over 7,800 hits. And Canada, well, we’ve gone international - people from the USA, UK, Poland, France, Israel, Australia, Russia, Germany, Latvia, Netherlands, Ukraine, Iran, Romania, and Spain have come to our blog. For a little blog that could, that’s not too shabby.

But for me, the blog has been much, much more. I kept a diary years ago - one that I hid under my bed and my sister would break into to read and tease me about my latest crush - but I stopped a long time ago when life got busy and things got complicated. The blog has been a weekly tab of my life, my health, my outlook on things. It has chronicled my entire journey into the OR, my past 365 days with Crohn’s - and that, that is an anniversary worth celebrating.

Of course, just like at the Oscar’s when the actors get so choked up they can’t thank everyone, I will fumble through my list of thank you’s. Thank you to the CCFC staff who have supported, believed in, and worked with the youth and YAC. Thank you to every person who has served on the YAC. Thank you to every CCFC volunteer. Thank you to the amazing blog contributers. Thank you to my friends and family and the people who inspire me to write posts about life with IBD.

But mostly, thank you to our international audience - growing in number and a contagious gutsy attitude - who read our posts, laugh and cry with us, and who make the roller coaster a much more enjoyable one to be on.

We are thrilled to be having our first birthday as an electronic journal - and we’ve set our sights on the horizon. We want to hit 10,000 blog visits by the end of August - we can do it, we have just about two months to get 2,000 visitors! Here is your challenge if you choose to accept it: send this blog to five people you know - anyone who has five minutes to read some gutsy material. Some of our most popular links include Anniversary (the original blog post!), John’s Inspiring Story, Pretty Please, No Pity Please, The Life Sentence, Tummy Cramps, Dizziness and Headaches, oh my! But let’s be honest - we love all of our posts.

To us - happy blog-iversary!

Jennie + the YAC

Happy 144th!

It’s July 1st - Happy Canada Day!

As we all know, Canada has the highest incidence rate of IBD in the entire world - the statistic to remember is every 1 in 160 Canadians is directly affected by IBD. Our bowels get it somewhere, and it just might be the soil we call home. No one knows why, but for whatever reason, IBD is especially Canadian.

And so we should celebrate Canada’s birthday with the same pride and excitement that we walked our HnW’s with - more voices (and more bowels for that matter) are always better than a single one. The CCFC is a uniquely Canadian charity, having been molded by passionate parents less than fifty years ago, and having raised millions for IBD research, in fact, the CCFC is the number one non-governmental funder of IBD research in the world. What does that mouthful mean? It means that every penny is making a difference.

1 in 160 isn’t rare enough that we’re a headlining illness, but it’s not common enough for the average Joe to understand what an ulcer in the gut means. So how do we break down barriers and raise awareness when we’re over 200,000 Canadians waiting in bathrooms wanting to be free?

Answer: in our own gutsy way. Think about Terry Fox or Michael J. Fox, Canadians who put their minds and hearts towards cures for their diseases and are now household names. We are the gutsy generation, with every step we take and story we share, we are making headway to the cure. Your part may be participating in your local HnW each spring. It may be applying for the Youth Advisory Council. It may be planning a fundraiser for your chapter, or having an awareness day at your school, or even donating the spare change you found in your sofa. No matter how young or old, how sick or healthy, you can make a huge impact and you can do it right now.

Happy birthday to good ol’ Canada - a country that gave us the CCFC, lots of gutsy people, and one that will one day give us a priceless cure.

Jennie