Wednesday, April 6, 2011

Countdown: 44 Days to our Book Release!

Only 44 days to go before our book is available on World IBD Day (May 19th) - mark your calendars!

Are you ever frustrated that IBD is an exteriorly invisible disease and no one can 'tell' you're sick unless they scope you? So do we - read this quote from our upcoming book: "I was told by nurses that it was all in my head. I had a nurse come in the room and say “You’re 18 years old, get out of bed. You don’t need mommy and daddy to do everything for you!” I didn’t know what to say, I didn’t know what to do. I started to think that maybe it was in my head, was any of this pain real?"

Have you ever had similar experiences? We want to hear them. Together, we will make a difference and find a cure - and get to read a really cool book.

Jennie

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!


Hey Gutsy Guys and Gals,


Here is a cool website I came across that has a slideshow that explains using phenomenal pictures what IBD is, how Crohn's differs from Ulcerative Colitis and vise versa.


You are probably all IBD experts by now, but thought I'd post this to show some photo's.





Hugs,

Ash

NEW: John Bradley's Inspiring Story

As soon as I posted my blog John responded immediately. Thank you for this! I feel very very lucky and grateful to have this priveledge to connect with others with IBD. I am very proud of you for having written your book: Foul Bowel ( http://www.foulbowel.com/ ). It is nice to see the support that is out there and learning more and discovering more and more of this support! Thank you so much for letting me post your story - it has touched me and I hope it touches others.


Hugs, Ashley




I became ill at age 18 and got progressively worse until finally diagnosed aged 25 in 1983 after multiple false diagnoses. I was straight in for surgery having a resection and 3 strictureplasties (the 3rd person in the world to have them done - my surgeon invented it). I thought that would be it, problem solved, but ohhh no. My symptoms started coming back while I was still on sick leave from the op! I was put onto steroids which made me feel superficially better but did nothing to alter the course of the illness. In 1985 I was back in for more surgery – 9 strictureplasties this time. For the next 8 years – rinse and repeat. Felt permanently dreadful, couldn’t eat, constant pain, 3 more surgeries of resections and multiple strictureplasties (24 in total). At that stage I really felt that the illness was out of control and that I would be dead by the time I was 40. While all this was going on I still had a career to build in brand marketing, and I did so by being very strategic about which jobs I went for, making sure that I could still deliver expected results while I was feeling terrible, so I was doing jobs that were well within my capabilities. I also got married after the first op. Just when things seemed to be getting worse and worse – my 5th op was only 18 months after the 4th – my symptoms finally began to settle down, probably due to being put on Imuran combined with steroids. After years of trying, my wife got pregnant and gave birth to our beautiful daughter. In 1996, 3 years after the 5th op, I felt well enough to push for an international role and moved to Canada with my employer on a 2-year assignment, which kept being extended and I ended up as Snr Vice President of Marketing, perhaps a bit later than some of my original peers managed, but I got there all the same. I still had health issues as much from all the surgeries as the Crohn’s. I started on Remicade in 2003 and that meant I could finally get of steroids after having been on them for 10 years. While Remicade made me feel almost normal again, I was aware I had a couple of old strictures still in the system so in 2008 I signed up to have them widened. Unfortunately, that procedure ruptured my small bowel so I had emergency surgery that day removing another chunk of small bowel, leaving me with only 20% of the original length. Even worse, that op did not go well as I bled internally afterwards and was rushing into another emergency op the next morning. Since then I have been mostly symptom free and feeling as well as I have ever done in my adult life. In 2003 I retired early from the corporate world and fulfilled an ambition to write, having 2 books published. The second one, The Foul Bowel, is my Crohn’s story but with a lot more humour and insight than in this very short Crohn’s resume! So, I have had a successful career, enjoyed a successful and enduring marriage, delighted in seeing my daughter, now 17, grow and develop into a wonderful and talented person, all the while having a long and complex set of Crohn’s problems. Although Crohn’s has been a big part of my life, I have never let it define me or deflect me from the goal of having a full and enjoyable life. I am not complaining about my lot in life.


I hope that is of interest!


Kind regards



John Bradley

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

It has been interesting the past long while. I'd love to say its only been a few weeks, but the truth is I've felt this way all my life: tired, fatigued, 'not well' . I was debating with myself for a while about writing this blog because I wanted to offer something positive to the gutsy readers... I want to try and show my best... I wanted to push myself with goals this New Year to inspire.... but... the truth is that I haven't been feeling the best. I don't have the energy to work out... which, bothers me a lot. Im a personal trainer and my boyfriend is one too.... I love to work out... and I have been able to do a bit of weight training... and walking... but nothing like Im used to... and nothing like what I need to do to train for my goals: the Ride to Conquer Cancer and the Death Race... which my boyfriend and I wanted to do together. I've expressed my frustrations to a good friend of mine. She inspires me a lot. She is in school away from home and her parents and dealing with her own IBD challenges. She has been through much more than I have and she still has a spark for life. She is determined to help others, and although she doesn't think so: I think she is absolutely amazing and that she is helping people everyday with her giving spirit. Her name is Jennie. Jennie has helped me find energy the past few weeks where I didn't think there was any. I been feeling very fatigued, dizzy, weak, lethargic since January. I push myself to go to work because I need the money to support myself, even though I am exhausted most of these days and have to really push myself through. I don't have the energy to workout and train like I am used to and this makes me feel very weak. I have had to put my part-time schooling on hold because i don't have the energy to get through classes, and this makes me feel... I don't know exactly what it is that I feel, but it doesn't feel good. Missing out, perhaps? I do not know what the future has in store for me, and this scares me. I;ve recently learned how BIG my need for security is. My fears about the future are so profound and debilitating: having a job to support myself and pay for my expensive medications, to live a normal life, to have enough energy and support to do 'the small things' like cleaning and cooking, to get married, to have (healthy) kids and to be strong and courageous enough to get through flareups on my own (without my parents). I am going to be 25 years old this July and these fears make me feel sick and nauseous sometimes. I try to be as strong as I can be, but why is it so hard sometimes? I try to be as happy as I can be, and then I am reminded of the 'realities' of the future. Its scary. How does one do it? How can I do it? Can someone show me the way... and show others with IBD the way. I would be honoured to share someone's success story on our Gutsy blog that has made it past their early 20s. Please send me a story with permission to share it on our public blog: ashley.ann.anderson@gmail.com Hugs, Ashley

Friday, March 25, 2011

I'm Still Here

Think of someone who’s done something incredible - like Albert Einstein. Even if you’re not a physics aficionado, you probably know that e equals mc squared. We connect the infamous equation to Einstein, we wonder at it, even though it’s unlikely that the man constantly thought about that one equation that defines him in our minds.

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

When I taught my younger sister how to read a clock, I sat her down with a massive clock poster with movable arms. I told her everything I knew, quizzed her, and when she had finally passed all of my tests, I not only felt proud, but more importantly excited for her that I had somehow let her in on the big world secret that was time. As children, time always felt unfair - we wanted more time to play, less time doing boring things, bedtime was too early, we wanted to sleep in later, we wanted to grow up faster. Learning to tell time was like learning the language that I’d misunderstood for so long, it gave me access to understanding the measurement of life.

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