The Gutsy Generation is an initiative by the Crohn's and Colitis Foundation of Canada's (CCFC) Youth Advisory Council (YAC) to foster awareness, support and action about Inflammatory Bowel Disease (IBD). IBD is a chronic autoimmune disease, affecting about 233,000 Canadians - with many diagnosed between 15-24 years of age - and costing the Canadian economy almost $3 billion annually. It's time to speak out and get up - coming out of the bathroom stall to find a cure!
Wednesday, April 6, 2011
Countdown: 44 Days to our Book Release!
Sunday, April 3, 2011
Show Off
No one ever calls me. Especially in the morning, as I’m running about my dorm room getting ready for the day. But come Friday morning, my phone began to ring and my friend’s name popped up on the screen. My friend, we’ll call her Ollie, was calling to let me know that she wouldn’t be in class because she was in the ER. “Finals actually almost killed me,” she joked. Ollie was frustrated that she hadn’t done a better job of drinking fluids, and had ended up being dehydrated and had endured several IV stabs to access her collapsed veins. I promised her that I’d send her the notes from our discussion class that morning. Her parents were en route to come and get her for the weekend, and I chatted with her on the phone as I packed my bag and got dressed for class. She asked how I was, I mentioned my increase in symptoms and discomfort, and my ill-thought-out plan to journey to an ER later that day. She encouraged me to go that morning, but I insisted on going to class first. I said good-bye to Ollie and ran to my couple of classes, then dragged myself back to my dorm room.
I wasn’t hungry even though I hadn’t had a morsel of anything all day, not even my daily meal of pills. I climbed in bed and passed out, throbbing in pain. A friend came by after her classes and we went to the dining hall together where I forced myself to eat something, but it made me feel worse. My Mom thought that I should try to wait out the weekend, as did I, after all a weekend ER visit typically only brings extended waiting periods.
But by that night, I was struggling in pain, so nauseated and purely exhausted. I was chatting online with my friends, when one friend (we’ll call her Katie) suggested I need a ‘House’ like doctor ASAP. Our other friend (we’ll call her Maya), quickly interrupted that we needed ‘Grey’s Anatomy’ doctors, like McDreamy. I reminded Katie and Maya that McDreamy was a neurosurgeon, and that both of them were fake doctors: I needed a real like House-McDreamy GI guy. But it was clear that I couldn’t wait, I had to go to the ER right then and there, they schlepped over to my dorm and Maya (a force of nature) hailed a cab. We filed in, giving the cabdriver the ER address, and as we sped away, he turned his head and said “Don’t have the baby in the cab!”
We all laughed, and our Grandfatherly taxi cab driver showed off with all of his jokes and stories. “Did you hear that FedEx and UPS are joining forces? Do you know what their new name will be? FedUp.” He kept the three of us giggling until we were at the ER, and we tumbled out of the car towards the hospital.
Fast forward a few hours, and I found myself drugged and dopey on a hospital bed and being denied nausea medications. Understandably, they wanted to see me upchuck on my own and not suppress the need to do so for them to be able to assess what the best thing was to do. If I vomited, I would get an NG tube, if I didn’t, I would get nothing. I buzzed my nurse and insisted on getting an NG tube, despite my absence of vomit, it had to be better than nothing.
“We don’t really get a lot of requests for these,” the Ferris Bueller look-a-like surgeon smiled, and pulled out some tubes. I pressed for the smallest one, and then mentioned that I could place them myself. He raised his eyebrows at me, as did the nurse, but agreed to let me do it. The surgeon, a guy who’s more than qualified to cut into people, held my cup of water as I slid the tube down my nostril. I knew how to measure the length of the tube, how to place it, and lickety split it was done.
They were shocked and couldn’t get over it. “I’m going to tell everyone I know!” The surgeon promised. I tried to explain that at my original pediatric hospital, children were taught how to place their tubes, but the doctors couldn’t get over it. They took an x-ray to check placement, which they happily reported was “perfect.” When they wheeled me to my surgery inpatient floor from the ER, all of the nurses gathered around my bed and asked me, “Are you the girl who put her NG tube? Did you really do it?”
Everyone that has come into my room has asked: I am the infamous NG tube girl. On a short walk around the floor with my nurse last night, she stopped to brag about me to a fellow nurse. It’s a funny thing to be praised for shoving a plastic tube down my nose. Is it really something to show off?
The doctors and nurses have asked me the secret to my NG tube success. “Conviction,” I tell them, “it’s all about conviction.” I want the control of putting it in, and you have to just do it with conviction. A wishy-washy NG tube experience sucks – it hurts more and it’s more upsetting. A 1-2-3-done approach may be scarier at first, but is over quicker and less painful.
The bigger metaphor is this: live with conviction, love with conviction, run with conviction. Be direct and honest, intentional and genuine. My NG tube celebrity status allows me to educate more people about the truths about IBD, the real experiences of what we go through. This is my fourth hospitalization this semester, and that’s hard, I’m in a lot of pain and feeling miserable. I miss my family and sometimes I feel like I want to cry. Last night, after having an intense upchucking episode, my roomie – a lovely older woman who we’ll call Stacy – asked me if I need a hug and then Stacy said, “Mothers always know”. I have been so honored with exceptionally generous friends who come to ERs with me at 2 AM, and bring me more ostomy supplies, and text and email and call to stay in touch. Their support reminds me that I am loved and that I can do this.
Showing off doesn’t have to mean being conceited and self-obsessed. Showing off can mean that you’re willing to be vulnerable enough to show other the scars, the pain, the way you can place your own NG tube – all so that we are educating and enlightening. No one has ever called me a show-off, and I hope no one ever will – but I don’t mind being an IBD show-off so that our organization is seen, heard, and respected.
And remember, my best advice – whether it’s placing an NG tube or living your life – do it with conviction.
Jennie
Friday, April 1, 2011
The Countdown is on: 49 Days and Counting...
I have some insanely exciting news to share on behalf of the Youth Advisory Council members - drumroll please...............................
On May 19th - World IBD Day - we will be launching our book! Think Chicken Soup meets CCFC pamphlets meets incredibly resilient and inspiring stories. So basically think AMAZING. And after all, World IBD Day is the perfect time to add to your IBD library. We are all so excited about this book, and we hope that you are too. This book will be the first of its kind, and I can only imagine how much of a difference such a book would have made when I was first diagnosed at age 12. The contributers to the book have shared their fantastic, determined, brave, and awe-inspiring stories. We are proud to be the vehicle to get their stories to you.
But that’s not it! (I feel like Bob Barker, only my show would be called “The Medication is Right”) You have a chance to win a free copy of the book. How, you may ask? Simple! Register for the Heel n Wheel (HnW) in your area - find all the information for your chapter at http://www.heelnwheelathon.ca/EN/index.html . This year, we are challenging The Gutsy Generation to mobilize into teams, use your Facebook to get friends and family involved! It’s super easy to get registered online for the HnW - for proof, check out my team page (which I set up in five minutes, I promise) at https://secure.ccfcfindthecure.ca/ParticipantPage.aspx?L=2&CCID=95&PID=14220&GC=GTv2 . Not only will the HnW in your chapter be fun, raising awareness, and active - but it is also a great opportunity to check out our book in person! And besides, if you raise $1,000 or more, you will also be entered to win an iPad!
And because we’re SO EXCITED about our book, we’re going to be sharing quotes from the book with you and counting down together to World IBD Day. Email us your team HnW page and your team story at thegutsygeneration@ccfc.ca so we can show the world how much the youth care and contribute to supporting the CCFC and finding the cure.
Ready for a taste of the book? Here is a quote from a story written by yours truly: “One day in the student government room, I was venting about my illness and the immense blood loss and the obvious pain that comes with it. After a long pause, one of the guys cleared his throat and asked if I was talking about ‘girl bleeding.’ I laughed, assuring him that Crohn’s wasn’t the same as a period, but it also made me angry – why don’t people know about IBD? The thought raced through my mind – there is so much left to change about how we perceive IBD.”
I cannot wait to be able to hold the book - we have been working very hard in order to not only raise awareness, but more importantly to support each other and give one another the strength to make it up the uphill endless battle that is IBD. We are counting down the days until we can share the entire book with you, so be sure to watch out for more quotes and exciting HnW updates!
Get excited, get counting, get registered, and get going - World IBD Day will be here before we know it.
Jennie + the YAC
Thursday, March 31, 2011
WebMD IBD Graphics and Photos!
NEW: John Bradley's Inspiring Story

NEW Inspiring Story: Kaella Carr!
Thank you Kaella for your response to my last blog - this means alot to me and it gives me much hope (and many other IBDers). Thank you for letting me share this - Keep up the great work :) . Getting your response makes me feel so grateful that we can come together and help each other. I remember when I was a kid, I didn't know anyone with IBD and I felt very alone going through life with the challenges of Crohn's. Thank you from the bottom of my heart,
Hugs,
Ashley
Kaella's Inspiring Story:
I don't consider myself a Crohn's success story but I do feel lucky each and every day. My last Crohn's-related surgery (a bowel resection) was over five years ago. My last "major" flareup, over four years ago. Sure, I've had bad days and bathroom emergencies, but I'm officially at my "Crohn's" best. I was diagnosed in February 2004. Like so many others, my diagnosis took time. In three weeks I lost 50 pounds. For months, I couldn't eat or sleep and was, at times, scared and depressed. My story has been told many times on CCFC blogs and as the first Gutsy Generation "Gut of the Month" so I won't go in to it too much. What I will tell you, is everyone is different. There were moments when I thought I would never get better. My weekly doctors appointments and hospital visits, and dozens of pills, were exhausting. It didn't help that I was constantly hearing "you're always sick" from people. This year I will be 28 years old. I am getting married in the fall and I couldn't be more excited. Everyday I say a quick thank you for my health. I didn't take a magic "get better" pill (although, I probably would consider it, if such thing existed.) What I believe has worked for ME and kept ME healthy is my lifestyle. I'm a very positive person. I eat extremely well (most of the time) and exercise, a lot. I began working out everyday (for a minimum thirty minutes) last summer. Three months later, I was able to go off my Crohn's medication completely. I can't tell you my success story will work for anyone else. In fact, I'm confident it won't as I believe everyone, and every "body" is different. I also am not nieve. I know my IBD could flare up again, anyday. I know that I could get sick before our wedding, on our wedding day, or overseas during our honeymoon. For me, I do the only thing I can. I stay positive and I live my life. I don't like worrying, because as we IBD'ers know, worrying leads to stress, which leads to flare-ups. Again, everyone is different but I just want you reading this to know that there will be a day when you feel like the best version of yourself. It may last years or it may just last a few days. My advice is to appreciate it. People take their health for granted and I never want to be like that. I am thankful everyday that I'm able to keep working in my dream job, feel well enough to do the things I love, and that I will soon marry the man of my dreams. My next goal is to have a family. Although, Crohn's and ulcerative colitis run in my family, I won't worry about passing on the disease until that time comes. As someone who has a disease that can affect, literally, every aspect of my life I know what many of you are going through. I was there. I may be there again one day. Please, keep you head up. I can't wait to hear YOUR IBD success story. Kaella
Wednesday, March 30, 2011
Frustrated and Fatigued - Looking for a Gutsy Feature
Friday, March 25, 2011
I'm Still Here
When I was younger, I had a handful of friends that had some abstract medical conditions - one girl had been in a bad car accident, one was born with a hole in her heart, and so on. I couldn’t get over the scars on their faces or bodies, on some level I could only think of them as survivors of their medical conditions. But when the situation is reversed, when I’m the sick one in the spotlight, I feel like I’m so much more than the girl with IBD. Years ago at a family gathering, I had a moment of ill clarity when I thought that everyone thought that I was just the sick girl, and nothing else.
But of course, that’s not true. I have likes and dislikes, things I’m great at, and things I’m not. I have favorite books, I like to cook, I can’t skateboard to save my life. I’m still here - beyond all of the IBD and medications, I’m still Jennie.
We all need people who are going to stand by us, with us, those who will help us stand back up. Sometimes I feel like I’m asking people to witness my fall, like I’m asking them to watch me sink, and then asking them to help me get up. I struggle with the asking for help and asking for support, I want to be stronger, braver, better. As much as I’m hesitant to ask for support, I desperately want someone to say “I’m still here.” The ongoing illness pattern leaves me feeling that the support is one-sided, as if I’m only asking for a cheering section for life and giving nothing in return. And it can feel like that, when your health never seems to stabilize, but it’s not true. I do my very best to be a thoughtful friend, and even though there’s always room for improvement, I’m here for my friends, and similarly they are for me.
Einstein may have discovered fancy equations. I may have IBD. You may have it too. But I’m still Jennie, you’re still you, and we’re still fighting for the day when IBD isn’t here.
Jennie
Tuesday, March 22, 2011
Duck, Duck, Baby

I need a new hobby.
Because my latest one - not so great. It involves ERs, and IVs, and hospital stays, and no answers. I’d take a vote, but I think it’s a unanimous decision - a new hobby is needed.
It probably didn’t help that I decided to take public transit back from the airport Sunday evening, fresh back from the break. Ever intent to save a few dollars on my lowly college student budget, I reasoned that a trip back from the airport didn’t merit a $30 taxi ride, and that the subway would do. Let’s do the math: I’m 5 feet 6 inches, my big purple suitcase is just that - BIG - and my hefty pink carry-on is just that - HEFTY. Mission: Get back to the dorm lugging said luggage up literally hundreds of stairs, transferring from buses to subways. Status: Completed. Good Decision? Not so much.
It’s not a new tale - a stubborn kid doing the stupid and unreasonable. It exhausted me, but I thought that would be that. I still didn’t feel well from my ongoing medical saga, nothing had changed, but classes were starting post-spring break, and I was going. And I did - for the first day. Then I was speaking with the GI team who said to go to the ER - right then.
My planning and budget went out the window. I spent the money to take a cab to the hospital - Mom’s orders - and heaved my hefty pink carry-on stuffed with chargers and supplies and joined the army of sick kids camped out in the ER. And, countless hours later, I was being wheeled up to the inpatient floor.
Only - this time, I didn’t have my lovely little private room. No, this time, I was informed of my (miniature) roomie to be - a two week old baby boy (we’ll call him Baby Boy for obvious reasons). Though I have yet to actually see Baby Boy, by all accounts he is very cute, and I must say, extremely well behaved for such a newbie. Roomies, no matter how tiny, bring those awkward social implications of having to be extra quiet and courteous and the sharing of the bathroom. Lucky for Baby Boy and myself (sarcasm implied), some retreat had stolen all of the residents for the day, which effectively meant that nothing was accomplished today.
Well, let me define nothing: nothing medical, which means nothing important. This AM, a very nice volunteer came to the room, and wanted to know if I wanted to make a duct tape wallet. Truth: Not overly, I want to be seen by medical professionals and feel better. But I agreed, she seemed so nice, and so I set about picking different colors of Duck brand duct tape, and created a funky little wallet. A waste of time? Perhaps, but then again, I have lots of time to waste.
It’s times like these - alone in the hospital - when I feel like I’m simultaneously everywhere and nowhere. I’m no longer as tiny as Baby Boy, totally new and fresh into the world, I’m older, and a bit damaged. His medical records only date back two weeks, mine are volumes thick and collecting dust in several hospitals. And yet here we are, so vastly different and somehow existing mere meters apart. The bottom line is that we’re both not feeling our best, and in the metaphorical ‘duck, duck, goose’ game of life, we’re waiting to be called and to run our fastest to a bright, shiny future.
Ready, set - run.
Jennie
Friday, March 18, 2011
The Life Sentence
There are very few things in life that last forever. Our shoe size changes, but is perhaps the same at some age onwards, our favorite food changes, our medications change, the place we call home changes, our jobs change, our cars change, our world changes. What is there in life that tangibly lasts forever, that we can hold in our hands and, despite our evolving life, stays the same?
Here’s the point: saying that IBD is chronic and lasts forever is a trick. We don’t really know what that means, we don’t really understand what forever means. It’s different than when we complain about waiting - “That took forever!” - it’s different than a slogan - “Stars and stripes forever!” Try as we may, we can’t really truthfully understand what it means.
A few days ago, I went outside to say hi to one of the little kids I babysit who lives up the street - we’ll call her Gracie. I told her I had something inside the house for her, and she walked with me, hand in hand with her Mom trailing behind, to get her little gift. My Mom had been clearing out my old things, and had come across a Barbie magnet set that had never been opened. I offered it to Gracie, who accepted it with big, glassy eyes, and then I was talking with her Mom. A couple of minutes later, Gracie - who had been running her three year old fingers around the border of the magnet package - looked at me and said, “Can I keep it forever?” Besides the obvious fact that it was adorable - my sister would groan if she knew I was retelling this story - it struck me as an interesting way to ask the question. It’s hard to picture it now, but one day little Gracie will be a teenager driving a car and listening to whoever the teenage idol will be in over a decade - and the furtherest thing from her mind will be if that old magnet set half-missing in her garage is really hers to keep forever. But today she’s three, and her forever is based on experience.
Maybe it’s like having a really, really big meal and thinking you’ll be full forever and will never want to eat again. Forever is rarely an accurate interpretation of now until the cows come home, it’s more like a measure of now until what-I-think-I’ll-feel-like when the cows come home.
We can change many things about our bodies and our lives. We can dye our hair, paint our nails, go to the gym, eat Oreos, and do pilates. But we can’t change that we have IBD. Sometimes it’s like how the classic lion tamer held a stool and a whip trying to subdue the lion back, the stool probably wasn’t very effective, but we try desperately to beat our disease back into a corner nonetheless. Even though we can’t really understand it, we will always have IBD - not to say we will always have symptoms or be sick or feel helpless or hopeless or frustrated.
Once upon a time, everyone thought the world was flat and that you’d just fall off if you went too far. No one thought that would change, they thought the world was forever flat and unforgiving. But the key is that the perception did change, and with it, experiences changed. Here’s the analogy: today, IBD is incurable and chronic and stigmatized, but that doesn’t mean that it will be that way tomorrow, or next month, or in three years. Our forever does not have to be humanity’s forever.
Here’s what our doctors didn’t tell us - IBD isn’t the only thing that’s chronic. We can be chronically determined, chronically optimistic, chronically fighting for our lives. And who knows, maybe one day not too far away, our chronic fight will win us a forever of health.
Jennie