Bad Apple

Last weekend was a long weekend since Marathon Monday is a sacred holiday in Boston. It was Monday night and I was watching some Criminal Minds, and getting my things ready for the week ahead. I noticed my stoma was doing an awful lot of churning and I texted a friend about this dismissively. She texted back, “Isn’t that one of your obstruction signs??” to which I replied “Yeah, but I think I’m fine”.  An hour later and I wasn’t so sure - the stoma felt like it was trying to twist itself off my body and the bag was super empty. Great.

And so, you may ask, what happened to get a food obstruction? Well I’ll tell you.

I blame it on the dining hall.

Seriously.

The dining hall is usually stocked with Lucky Charms and bananas and apples and so on and so forth, but sometimes there are droughts. Most notably bananas droughts. And those who know me well know that my diet is 99% made up of bananas. Accordingly, last weekend’s banana drought relegated me to the pile of crispy apples perched for my taking. I decided to have one at breakfast. And lunch. And dinner. Plus eating ones in between. You do the math, it tallied at least five apples, which anyone would think is generally okay.

Nope. Not is you’re an ostomate. Disclaimer: different ostomates can eat different things - heck, different IBDers can eat different things. I can usually eat apples and be totally fine. But not last Monday.

So I schlepped myself (and a dutiful friend) down to the local ER - conveniently sporting my ‘No Colon and Still Rollin’ shirt, courtesy of an IBD friend - and the near-week of obstruction territory began. It’s never amusing to be in the hospital, but at the very least it was more straightforward than other visits I’ve been subjected to.

I was both amused and annoyed at the amount of reprimanding I got for eating apples. Everyone and anyone was willing to dole out the advice, no apples for Jennie. Yes, okay, I admit it was stupid to eat so many - but then again, I ate apples! It wasn’t like I was doing something really dangerous. A friend laughed at this and said I’m probably the only person to be sent to the hospital for eating too much fruit. Likely, I wouldn’t put it past myself.

And it was mostly all okay - until the last day. There’s always that one (if not more) jerk of an intern or attending or whomever who believes it’s his/her job to rain on your parade. And I mentally check out at this point - I have no desire or energy to spend on defending who I am and my history to someone who can’t see beyond my age. 

Alas, every hospitalization must end and I was shipped back to my dorm (still in my ‘No Colon and Still Rollin’ shirt, yes, it’s in my laundry bin now) and ready for a nap. At least I had remnants of this weekend to get my feet back beneath me and prep for the last few days of the semester.

In life there are going to be a few bad apples - we’ve learned that the hard way - but as long as there are some bananas and friends to take us to the ER in the middle of the night, well, I think we’ll all be just fine.

Jennie

Gutsy Guy

If you're not entertained and amazed by the internet yet, you should be!


I am always impressed and inspired by the IBD blogs I can find online and the phenomenal people behind them. My latest and greatest find of the week is a blog but a super Gutsy Guy - who also goes by Paul! He is super active and definitely lives "bigger with a colostomy" - promising up to his blog's name. This is a great post about getting back to hockey post-surgery, and click here for his main blog!


Please check out his site, his amazing attitude, and unstoppable soul. Paul, you are truly gutsy and we're happy to shout about your accomplishments on your behalf!

Jennie

Tales From the Throne In a Cushy Hospital in Denmark

I am currently studying my Masters. While this is really quite common for a 26 year old, the interesting thing about my studies is that I’m completing them outside Canada. I’m actually pretty far away from home, as I live and study in Copenhagen, Denmark. I also have ulcerative colitis, and to keep my symptoms under control I get Remicade treatments every 6 weeks.  Obviously, I still need these treatments while being abroad, and this post will outlines those experiences. Needless to say, having to get medical treatment in a foreign country in a vastly different health care system is an interesting experience to say the least.

Let me set the scene for you.

First, I’d just like to start off by saying that I actually misidentified one of the hospitals for a castle. Honestly, I think for a moment I mistook the big (and somewhat universal) “H” to stand for Hogwarts.   Second, doctors here are referred to by their first names. My doctor shook my hand and said, “My name is Ebbe”. I’ve never had that happen before, and it was probably a good thing because there was no way I could have said his last name without making him laugh. But all his coworkers, be they administrative personnel or nurses refer to him by his first name. 

Now, in case you didn’t know, the Scandinavian health care systems are some of the most highly regarded health care systems in the world. My Canadian GI actually told me before I left “I don’t worry about you, you’ll be taken care of in Denmark”. She sure was right because when it comes to Denmark, they have public health care nailed. They have all the latest technology, and EVERYTHING is computerized. When I broke my arm in the fall, all the doctors and lab techs kept showing me my x-rays and saying, “look, there it is”. They would zoom in on the break and allow me to study it with them, almost forcing me to see what was going on.  You even get snacks and stuff while getting treatments, and your friends and family can have some too.  Blood requisitions are all on computer, you just show up and present your card and they know what to do.

Now when it comes to Remicade, they have completely different processes. No steroids are given prior, no flush is given after. The Remicade goes in at a fast drip rate, usually taking around an hour.  I sit down in a lazy boy chair, remote myself back, and watch TV for an hour while waiting to finish. The lack of steroids means I don’t feel bloated afterwards, and I also don’t feel like I could eat a horse. Everyone is super nice and overall it’s a pretty great experience.

However, as great as it is, and as frustrating as I find it to sometimes see how far Canada needs to come in terms of updating systems, I do miss my Canadian Remicade experience. I would still take my nurses at my ambulatory clinic in St. John’s any day.  No matter what, sometimes there really is no place like home. 

Lesley

Can You Hear Me NOW?

If people had thought bubbles above their heads, mine would continuously be advertising, “Hey, have you heard about Inflammatory Bowel Disease? Ask me about it!”. It’s reminiscent of the ‘I have Crohn’s, ask me about it’ face paint I scribbled on my leg at a Heel n’ Wheel or the ‘Ask me about Crohn’s and ostomies!’ poster I have on my dorm door. 

Over the past nine years, I have found it very difficult to get media attention about IBD. I can never quite decipher if people just think it’s gross or not proper conversation, or if they just have no sweet clue of the disease that ravages our guts. But despite my constant shouting about this, I only get the occasional whisper of a response. Before I was headed to Peru, I decided to see if I could get into a news publication at school to promote awareness about bowel disease. I emailed everyone (in bold because it was literally EVERYONE) involved in campus media, and I didn’t get the slightest response. Then I remembered a friend in a class who’s involved with an online media page and thought, good idea, I’ll have an in. She gave me the email for the people in charge, whom I promptly emailed. I waited and waited, and got a simple platitude of a response of, “We’ll consider this and get back to you. Have a good trip.” Only they never got back to me. Upon returning back to school post-Peru, I thought, let’s try this again, now there’s more of a story. Nope. The email response said, “I’m glad you had a good trip.”

Like thanks but no thanks. I’m a student at your school living with a chronic disease who just did a super cool thing with an amazing charity to change the lives of people affected by bowel disease, but it’s not enough.

And yet, this morning as I logged on to my computer, I was nearly infuriated by an article about a student doing the Boston Marathon in memory of an Uncle who had passed away from cancer. And don’t get me wrong - that’s awesome for her and that’s very cool - but why is it more important than my disease? Why does it merit attention and why don’t I?

That sounds childish and whiny, but I mean it in the more general sense of IBD versus all other ‘glamorous’ diseases. I am stomping my feet and shouting, but no one is paying attention. How do we get our cause into the spotlight and help demystify a disease that touches so many people?

It makes me want to walk around campus with a sandwich board sign that reads “HEY I HAVE CROHN’S, IF YOU DON’T KNOW WHAT THAT IS - YOU SHOULD!” or to introduce myself as “Hi I’m Jennie, can I tell you about Crohn’s?” I feel like I’m failing when the awareness around me is limited and I’m not doing a good job at raising the profile.

Ultimately I am not my disease. I am not Crohn’s, I am not an ostomy. A friend of mine and I were talking about this yesterday and she said, “Well, someone who dates you is dating you, not your ostomy bag” and she’s right. But I do consider myself an advocate and feel the burden of ignorance pressing on my shoulders. I will not stop seeking opportunities to educate others and will try my best to remain undeterred by the bumps in the awareness road. 

And perhaps, at the end of the day, it’s not one loud voice that has the power - but all of our little voices culminating in a harmony so that we will be heard, loud and clear.

Jennie

C'mon Body Don't Fail Me Now

I like to plan.

I hate to plan.

Both of these statements are true and it is an argument that I continue to have with myself on a daily basis. Very Shakespearean of me: to plan or not to plan, that is the question. Now here’s the thing, I have always enjoyed planning. Not necessarily always daily routine kind-of-plans, but more long term plans and right now I am in the planning zone.

This planning zone that I have engrossed myself in currently revolves around the next couple of months, sweet, sweet summertime – or at least it should be. Yet as I find myself ecstatically registering in a spring course to satisfy the VERY last credit of my undergrad degree (yay!) or booking a celebratory trip to Italy with my mom (yay again!) I also find myself extremely nervous and anxious about what is to come. These next couple of months are important and I need my body to behave; but all I can seem to think about are the many times before I have meticulously planned out my education or an event/commitment that I fully intended on fulfilling – and all of the times that I have had to, with regret, cancel.

So as my mom and I were planning our trip to Italy she asked me if I thought we should get cancellation insurance, I of course said yes. She of course agreed reminding me that my post semester vacation hot spot is typically Mount Sinai Hospital. I mean let’s get real nothing screams relaxing retreat like the rhythmic beat of IV pumps, the sweet smell of sanitizing soaps, the exhilarating rush you get waking up at 5:30am to the prick of needles, the oh so stylish hospital gowns, or the mini celebration you allow yourself to have when you make it to the bathroom just in time – am I right, or am I right?

Living with a chronic disease makes planning unbelievably scary; we know that health is fragile and that it can be snatched away at any moment. So as I tackle my upcoming plans and commitments I find myself muttering the words, “c’mon body, don’t fail me now”. I mutter those words in hopes that my health will stay intact, that my good buddy JP doesn’t suddenly decide he doesn’t like the warm and cozy home formally known as my abdomen and that this upcoming summer will be the healthiest I have had in a very long time.

So here is to being optimistic and hoping for health – I have my fingers crossed (for me and for all of you of course!!)

Taylor

Growing Up is Hard to Do

There are several times during the year when holidays serve as alerts of how much my life has changed over the years. There’s Hallowe’en - when I think of being 12 and newly diagnosed and so excited I didn’t have an NG tube so I could eat candy. There’s my birthday - when I remember being in the hospital three times and unable to eat cake, and the list goes on and on. But for right now, there’s Passover. On the way to the first Passover sedar with my cousin, she asked me where I had gone last year for the sedars. I was thinking and thinking and thinking, unable to extract a memory, until I smiled and said, “Oh yes, I was in the hospital”. 

This year I was not/am not in the hospital and have been fortunate to attend the sedars and be in the world and all of the wonderful things that come with not being attached to an IV pole. My diagnosis never seems to be very far from my mind, and I was thinking about it at the two sedars. On the first night, I was seated at the unofficial children’s table (12 - 21), though I had tried to finagle my way to the adult side of the table. I managed to sit right on the border, but groaned slightly at the idea of sitting with young people. Written down this sounds completely ridiculous, but here is what I’m getting at: with the average young non-IBDer, I have so little in common that it’s hard to hold a conversation past the subject of Facebook. For the most part, I’ve had such different life experiences that I do not feel connected to my peer group. Give me a three year old or an eighty year old and I’m good - but another 20 year old and I lose my words. 

It’s not that young non-IBDers aren’t nice or good people or any of that. When I was 12 and diagnosed with IBD, I went from being that age to 86 in an instant and I no longer understand the metaphorical language my peers speak. Enter college: I still physically look like I’m 12 (and swear puberty hasn’t happened yet, thanks medications and sick guts) but would rather have a conversation with my professors than the kid sitting beside me in lecture. I think there is something so admirable about being your age and enjoying youth and all of that, it’s refreshing and very ‘in the moment’. So I try to grow backwards, or grow up, or whatever the correct phrase may be so I can enjoy being young too. 

With my Crohn’s history, I spent more time looking forward than looking around. Clarification: I was sick so often and was too miserable in my own body if I focused on the present which led me to think about the many tomorrows that I hoped I would be feeling well. Maybe it’s that, I’m so trained to think ahead that it’s tough to just be 20 and in college. 

There’s no great resolution to this post, because life is messy and I haven’t found a road-map to it yet. There’s not always answers, but that doesn’t mean that there won’t be, doesn’t mean that there’s no hope. I’m super, super, super, super lucky for the wonderful friends I do have and if any, it just makes me realize that. 

Jennie

On Top of the World

Two and a half months ago, I was in a hospital bed weeping. Surgery hadn’t gone as planned and suddenly the horrific semester I had just overcome seemed to loom before me. My heart felt like it had been split open, my dream from the summer of going to Peru seemed torn apart. Life was unfair and overwhelming and painful.

But if there’s anything I’ve learned, if you wait a few minutes, take in a big breath, and remember who you are, things become a little more possible.

So now, as I sit here writing this, I will try my very best to relay the amazement, wonder, joy, and peace of my recent trip to Peru. Warning: there truly are no words, so whichever I find will not do it justice. 

First of all, the people were wonderful. There were ten of us including myself and the group was comfortable and hilarious, comforting and encouraging. We sang songs and joked and had serious times when we related stories of pain and discouragement. It was a group of people who had every reason to be bitter and angry and discontent with the world, but somehow there was so much joy.

We were broken in easily to the challenge that was steeped in front of us. After a couple of days of touring around Cusco, wrinkling noses at the cooked guinea pig, and grinning over adorable Peruvian children, we donned our backpacks (which seemed to get heavier everyday!) and took out our trekking poles. I’ve never been to South America before, but the sheer vastness of mountains and the glaciers standing triumphantly in the background, the laziness of the cows grazing in the fields, the rumbling of the river as it fell over itself - all of these sights and sounds I tried to commit to memory so I would never forget. It was, in a word, beautiful.

There are too many details to try to write down, too many things I will not be able to aptly describe. On the third - and hardest - day, we climbed to the peak (4200 m) to ‘Dead Woman’s Pass’. After climbing the ultimate StairMaster (thank you Incans), I climbed to the top of a big rock with a fellow young trekker. We looked down at the stairs, winding in the distance, saw the Incan irrigation chevrons carved into the landscape, and cheered for the trekkers behind us to make it to the top. There aren’t words - it was gorgeous and glorious and empowering and exciting. We sat there and breathed, inhaling and exhaling, unable to find words to articulate how our hearts were singing.

Even with the chilly nights wrapped in sleeping bags and the midnight journey to the bathroom tent with only a headlight, the trek came to an end way, way, way too fast. We reached the Sun Gate and took countless pictures, so proud of one another and the journey we had completed. I looked down at Machu Picchu, the postcard picture I had seen online so many times, and couldn’t mesh the real and surreal elements of the moment. I had made it. I was on the top of the world. And as happy and proud as I was, my heart ached that the trip was nearing an end and I would be leaving the people I had come to care about so dearly.

Besides crying as I left Peru, the most vivid memory I have at the end of the trip was the bus ride from the train back to Cusco. It was dark and everyone was tired and plugged into their iPods or falling asleep. The bus drove along, the lights of the surrounding towns twinkling. I was listening to my music, grinning at the joy of the occasional person who would break out into song or the laughter that would warm the bus. I closed my eyes so tight and promised to remember what it felt like to be there and wished the bus ride would last forever. If I close my eyes now and listen to my heartbeat I can still feel the sway of the bus and the hum of laughter and the peace that blanketed us all. 

It was the best experience of my life, though I wish I could say that more eloquently. I am so happy to have been healthy enough to go, but now sad that it is over. But I know that there will be new challenges, new mountains, and new friends.

And when I get nostalgic and wish I was back on the trail, hiking steps and laughing, I’ll look at my pictures and smile, and close my eyes and be back in the bus, happy and whole and healthy.

Jennie

Ready, Set...

There are few moments in life when there is a defined start and finish line. There are fewer moments when someone turns and asks, "Are you ready?" But perhaps more importantly, there are the fewest moments when you know when you’re ready.

I’ve been thinking a lot about my early IBD years. The moment I understood what having Crohn’s meant - what being chronically ill really meant for me and my family - it felt like my heart has dissolved into my belly and like I was falling backwards and upside down. It was like that feeling you get when you’re so angry or scared or confused or anxious that you can’t move or breath or think. When time simultaneously stretches out before you endlessly and disappears from beneath you.

I was not ready for my diagnosis. I was not ready for the life I was forced to lead. I was bitter and angry and felt too old for my 12 year old body. It is an eerie feeling to be at war with your body, when you cannot trust it to function as it should. All of this stands in such direct contrast to how I feel now. When I saw my GI a week or so ago, I broke into a smile and tried to put into words the joy of running. I’m not a good runner - I will not win the Boston Marathon or anything important - but I love it. I love moving and being free from the pain that plagued my body for so long.

And I know it’s not over. I know there’s a big, scary flare waiting around the corner, lurking until I least expect it, I know there’s likely another surgical board with my name on it. So I can’t put blinders on and walk away from my diagnosis - I keep myself in the IBD world to help others be as ready for their lives and the challenges ahead as they can possibly be.

Life happens so quickly. Before you know it you’ll wake up and it’s next week. Especially with a body that marches to its own rhythm, it’s a beautiful skill to be able to appreciate each little moment for what it is. I remember the first time I came off Prednisone when I was 14 and taking the dog for a walk and literally crying at the bright August sun and the little flowers. They were just so beautiful and I couldn’t believe I hadn’t understood them before.

So lately, as I run, lip-syncing to ‘Call Me Maybe’ or some other ridiculously catchy pop song, I can’t help but feel an infectious spirit of happiness wrap itself around me. I close my eyes and imagine being on the plane to Peru, then being amongst IBDers, then being atop Machu Picchu. I dream of looking down at the ancient Incan city, bronzing in the sun, shoulder to shoulder with other people who passionately believe that there will be a cure for IBD and that IBDers can do anything they put their minds to. The thought sends chills down my spine and makes me wonder if this is all real.

And then I remember it is. I am ready to run, ready to raise awareness, ready to hike, ready to ‘change attitude with altitude’.

I’m ready to live.

Jennie

Diagnos-aversary

“People are pretty much alike. It's only that our differences are more susceptible to definition than our similarities”
- Linda Ellerbee

Happy Diagnos-aversary to me!

Yeah, so I totally just made up that word, and I am not 100% sure that it’s something one is supposed to celebrate. Regardless, two years ago today I was rolled out of my very first colonoscopy and told that I was a very sick girl. Uhh I’m sorry, I am a what? A sick girl? With Ulcerative Colitis? It’s a moment that my memory refuses to forget. This moment has been on my mind a lot this past week, and I am going to attempt to explain why. I implore you to stay with my scattered thought process; I promise I do have a point!

Thought one: Monday, I finished a lesson at my teaching practicum with a fellow colleague. Our lesson focus: Inequality. One of our goals: To have students realize that we are all more alike than we realize. We had students focus on the commonalities that they had with their peers rather than the differences. I thought that this idea was all well and good until I was driving home and I realized that as young adults we don’t even do this. We have such a tendency to highlight the things that separate us, rather than the things that might bring us together.

Thought two: Tuesday, I went to the on-campus clinic to receive my weekly iron injections. As I was chatting with the nurse about my own up and down health, I asked if there was anybody else at Brock with a J-Pouch. She said she wasn’t sure, but that they had seen a lot of people in flares right now. One, this breaks my heart, and two; it makes me wonder who I interact with on a daily basis that’s battling IBD.

Thought three: I have a tendency to be hyperconscious of the people around me. I often wonder if the boy in my history lecture sits on an aisle seat out of habit or out of fear that he might have to leave to go to the bathroom. I wonder if the girl in the cafeteria eating a banana and saltines is in a Crohn’s flare. I wonder if the boy bolting down the hall is late or running from urgency. And almost every single time I step into a public washroom, I wonder if there is anybody else hiding amongst the stalls, self-conscious and embarrassed about their enigmic bowels. Each and every time I see something like this I want to go up to that person and say, “Hey, I understand. I’ve been there and I have bad days too.”

Thought four: One of the most amazing experiences I have had this school year has been becoming friends with a very lovely lady who also has IBD. Having somebody there to talk to who has been through the same pain, the same embarrassment, the same fears, the same anxiety and truly understand how I feel is refreshing and comforting. It makes me wish that everybody with IBD could have a friend like this.

Two years ago today, I would have loved to have had somebody come up to me and tell me I wasn’t alone in this battle. That so many youth were fighting the same fight that I was, that understood, that were the SAME. So please know that you are not alone, that you have more in common with the people around you then you currently realize. And that if you want somebody to talk to and somebody who understands what you are going through, message me – I am more than happy to be a member of your army as you fight your fight.

So today I am not going to celebrate my diagnosis. Instead I’ve decided celebrate that I am a fighter who has competed in a tough battle; a tough battle that I believe has prepared me well to aid others in their battles.

-Taylor

PS If you need someone to reach out to, email us at thegutsygeneration@ccfc.ca

CCFC Education Symposium

Check out this year's CCFC Education Symposium  - for the first time EVER - we have a specialized stream for youth like you!

This interactive and fun session is geared for youth that have been diagnosed with IBD. We'll be chatting about how to deal with IBD and school, share some incredible inspirational stories, play "Are you Smarter than your I", and you'll learn tons of fun ways to get involved with the Gutsy Generation! Basically, there will be a lot of talking about poop - in a fun way!!

 

Check out the link above to register - it's only $8! 

 

Contact Tiffany Lagman, tlagman@ccfc.ca or 416 920 5035 ext. 215  if you have any questions, and pass this around to any others you know that would be interested in spending a morning networking and engaging with others affected with IBD.  Remember - it takes guts to talk about it - let's do it!!!