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!!!

Blip

When I was leaving school for the summer last year, I distinctly remembering feeling more beautiful than I had ever. Not in some vain/external way, but as I looked in the mirror, I just felt whole and complete and like everything was right. And mostly, I feel that way all the time - I don’t blink at my ostomy, I expect it on my belly.

And for a long time - until last night - I thought that I was fighting a stigma. And that was heavy enough, let alone what I discovered last night. 

The scene goes as follows: I had just left my evening class, and was waiting for the subway when I heard my name and turned to see my professor from that class behind me. Of course we started talking and I asked him a question. It’s my creative writing class, and for my final submission, I’m writing a story about a girl with an ostomy (a story I’ve been wanting to write for a while). I asked if I should tell the class about what it is, to which he quickly said no, I countered that I didn’t want to spend time in the story explaining the medical technicalities. We boarded the subway, continuing to talk, and I could tell by his kind, albeit blank, stare that the poor man had no idea what I was talking about. “Do you know what an ostomy is?” I asked gently. He grinned, “No.” 

Ah, the weight of the world! We seemed to be tasked with educating and fighting a stigma. I explained it to him, quietly hoping that the bystanders on the subway might be listening and getting educated too, and there were certain keywords that got a visceral reaction out of him, i.e. ‘intestine’, ‘no colon’. I was happy to explain it, but felt deflated at his ignorance. 

Today the lull in understanding and insecurity deepened slightly. First, I was sitting in class next to a guy friend when my ostomy decided to sing a bit (aka make random, gurgling noises) and I could see his head swivel in my direction. Oh dear, I thought. He didn’t ask what it was, nor did I lend an explanation - suddenly unsure that ‘Oh, it’s just my ostomy’ would be a meaningless statement. Secondly, I was helping out with a group on campus and I really needed to empty my bag, I could feel it ballooning under my leggings. I was sure that others could tell and tried to hold my hands in front of myself, just in case. 

It was the same when I had Crohn’s. There were times when I didn’t need to tell those around me - when I was feeling well - and then times when I was sick and running to the bathroom fifty times a day when an explanation was needed. The line between knowing and ignorance, telling and silence, hope and despair sometimes seem blurry and unmarked.

At the end of the day - I don’t care what others think. I love my ostomy, I love my body, and I wouldn’t change it for the world. But I’m also 20 years old and in college and I fumble with the idea of how to tell a guy - or anyone for that matter - about my ostomy without being too detailed. I know it depends on who it is, what the context is, what our history is, etc and so forth, but still - the question bounces around in my mind. 

A blip is just a blip, a bag is just a bag, and life, well, all we can do is live it.

- Jennie

New Normal

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails” – William A. Ward

I’ve been thinking a lot about the idea of “new normal”. 

As humans we are creatures of habit. We like to wake up and know that we can rely on constants. Knowing certain places will be safe, specific people will be there, various routines will be performed, that our bodies will be vessels that help us rather than hinder us, and at the most basic level simply knowing that we can rely on things we’ve always known to be reliable. 

The reality is, is that the only constant that we can rely on is change, and the only thing that we can really expect is the unexpected. So if the normal that you have been accustomed to becomes interrupted and your life feels uprooted because everything you have come to know is unstable – try not to think of it as abnormal, try and think of it as new normal.

Having unpredictable bowels leaves you in periods of stability sometimes and instability others and this re-adjustment of new normal might just become a constant in your life. The day I was diagnosed, March 12th, was the start of a new normal for me. Finding out I had a disease I would carry with me throughout the entirety of my life was a scary thing. Questions raced through my mind: Would I be able to finish university? Would I be able to be a normal university student? Would I enjoy food again? Would I be able to have a normal relationship? Would I be able to live my everyday life happily? Would I still be able to play sports? Would I be able to travel? Would I be able to enjoy social engagements again? These and about a million other questions bombarded my brain. I can tell you the answer to all of these questions is yes. I have been and will continue to be able to do all of those things. The way I go about it might not be considered normal to the people around me, but it has become normal to me – a new normal.

So re-evaluate the winds and adjust the sails if need be. The changes that have come about don’t need to disorient the direction in which you were headed. You might have to endure a longer journey or a more trying trail to get where you’re going, but you’ll still get there. 

Change is tough, but you are too.


- Taylor

So Far So Good

It seems nearly impossible to me that it’s virtually the end of February. Give me a couple of weeks and I’ll be headed home for spring break, and then a week after that, I’ll be off to Peru. And all of this makes me think, so far so good.

I hesitate to compare the present with the past - but the comparison begs to be made. Last semester was a matter of surviving, amongst constant obstructions and weekly hospital visits. Being pulled from class to brood in a hospital bed was disconcerting: I would wake up unsure if I was in my dorm room or a hospital room, I was endlessly frustrated and yearned to simply sit in a classroom and take notes. It doesn’t seem like the most glamorous of dreams, but perhaps all of my dreams are mostly ordinary things. 

I take a certain pleasure and excitement as I head to class and learn. It is too overwhelming to recognize that I haven’t missed a class this semester, save for coming back a week late after my surgery. I’ve been able to see my friends, even make friends, go for runs, go to the gym, and eat (and enjoy it!). What a difference a semester can make.

But before I take all of the credit, let me remind myself that I wouldn’t be here without my parents, my friends, or the doctors and surgeons who listened to me and stood by my side. For me, it underlines the importance of fighting for being heard - even if it’s an ongoing battle - and believing in myself and what my body was feeling. 

It’s days like these when everything seems possible, when the road stretched before me looks so exciting that I cannot wait to run down it. I can only hope for the same for everyone else.

Jennie

Listen Up!

Do you ever feel like you’re in a sound-proof screaming at the top of your lungs?

Over the years, I’ve often felt this way in medical settings. Be it at an appointment, or in a hospital bed, sometimes it feels like no one is listening to me. When I’m stuck in the hospital and woken up at some terribly early hour only to be judged and pigeonholed by a team of doctors who likely don’t know my middle name or anything worthy about me, I shut up and sit there and ignore them.

Now, that’s all fine and dandy, except for the fact that they’re the ones holding the prescription pads and the ones ordering the tests - in other words, the ones who are in immediate charge of my medical future. Doctors preach being involved in your care, writing things down, making your own decision, and yet most doctors I’ve encountered maintain their preconceived notion of me, no matter how much I fight against it and demand to be my own person. 

At the end of the day, I am responsible for my health. I am responsible for being heard, even if I have to run down the hall screaming and be chased by security (this hasn’t happened but I wouldn’t put it past myself). The other day I visited a good friend in the hospital. It was bizarre walking the halls as a visitor and not a patient, an experience I haven’t had in months upon months, and make my way to her room amidst the crowd of doctors and nurses. Her Mom and her recounted the frustrating stories of one doctor saying one thing and another saying something different, of feeling up to their eyeballs in opinions. How is someone possibly supposed to make a sound decision? We are often given selective information, like breadcrumbs down a certain path, and rarely have the amount of time and support to make the decision that best coincides with our bodies and our beliefs. 

Sometimes, in the middle of the night, or right before I swing myself from my bed in the morning, I unearth a medical memory. Often they’re painful ones, ones where I butted heads with doctors and had to fight - sometimes when I won, and sometimes when I suffered a loss. But at the end of the day, I made it through, scars and all, mostly in one piece. 

There are certain things I know about my life - I will always love Grey’s Anatomy (hello Patrick Dempsey), bananas will always be a staple in my diet, I will always lip-sync to music as I run (attractive, yes), and I will never stop speaking up for myself. 

You have a voice. I have a voice. And together, we are loud and we are powerful and we will be heard.

Jennie

Rock Bottom

“Rock bottom became the solid foundation on which I rebuilt my life” – J.K. Rowling

Rock bottom – I think everybody has been there, and I am not talking about the city where Spongebob-Squareapants lives; I am talking about the breaking point, where physically and emotionally you are shattered. You feel like prey being hunted on by a vicious black cloud that always seems to have higher ground; and every corner you turn during this hunt seems to hide another scary monster that is waiting to jump out at you when you are most vulnerable. 

I have hit different levels of rock bottom along the way and each one for me still stands out vividly in my mind. The first face to face encounter I had with this low of lows stands out more prominently. It was the first moment when my sunny disposition, positive attitude, and keen ability to regulate my emotions could not mask the pain I was feeling. It was a Saturday night and about two days before my very first hospitalization. I sat hunched over sobbing in agony, with my hands wrapped tightly around my abdomen perched on the porcelain throne I had become all too familiar with; every bone in my skeleton of a body ached as I vomited into the garbage can. I had been in this position before and I knew it wasn’t good. In the midst of my very own Groundhog Day episode the bathroom door swung open and I looked up to find my mom and good friend staring at me with deep concern in their faces and tension in their bodies, as they made sure I was okay. I wasn’t okay, I was at rock bottom. I felt broken and unfixable. I had lost control of my body physically, lost control of myself emotionally and was devastated when I saw how much pain I was causing the people I loved as they were forced to watch me spiral downwards uncontrollably. I saw absolutely no silver lining in the hurricane storm hovering over me, and my heart was breaking as the image of health, and youth drifted farther and farther out of my reach.

There I sat on the cold, hard surface of rock bottom.

I can still remember how easily the tears flowed during this time, and how I couldn’t shake the dull ache in the pit of my stomach. These weren’t tears and belly aches caused by the pain of IBD, but rather an ache caused by the belief that it wasn’t going to get better; that this was going to be my life. As much as doubt flooded through my mind in that moment of defeat, over time things began to get better – more stable. 

I’ll leave you with a quote from the movie Blow that I believe to sum up the highs and lows of pain and happiness, it goes like such, “when you're up, it's never as good as it seems, and when you're down, you never think you'll be up again” – but life’s a cycle and these ups and downs are inevitable. This doesn’t make it easier each time you feel the tears start to flow and that dull ache in your stomach begin, but what it does is give you is comfort that eventually you will be up again. It might not be tomorrow, or the next day and you might have to fight for it – but it will happen, and when it does I promise 
you’ll be stronger because of it.


- Taylor

Reality vs. Perception

Recently I’ve seen lots of post-surgery scenes on TV shows. The scene goes as follows: the family sits by the bed, teary eyed, the patient slows stirs, then wakes up and smiles and life goes on.

Now wait a moment, is it just me or is this a total lie? For myself, even for colonoscopies (when I had a colon) that I had under general, I wake up violently. According to some article I read years ago, younger people tend to wake up ‘more violently’ than older people. For me, as soon as I’m consciousness, I’m thrashing about, whining and demanding pain medication as the pain from surgery begins to overwhelm my nervous system. After my surgeries, I wake up in the recovery room alone, and then am eventually wheeled to see my family. 

I don’t think you ever get used to pain. I get it can become familiar, expected even: the way you can wake up in the morning and anticipate the pain. But you don’t develop tolerance to intense pain. But you do have to survive it.

Clearly there is a difference between the reality of living with an illness and the portrayal of it on television. So how do we change the message? For better or for worse, medical dramas have immense power in influencing what the public thinks or knows about certain diseases. For example, when watching ‘Grey’s Anatomy’ last week, one doctor asked if another could assist her on a proctocolectomy. I smiled, I knew what it was since it was my first surgery. I wondered, did anyone else know that word? They know Alzheimer’s, they recognize chemo and transplant terminology. And that’s important - we need awareness about so many diseases. I can get disheartened when I’m constantly reminded of how far we have to go to achieve our missions of awareness and a cure.

But then again, think how far we’ve come.

Jennie