You’re Making Me Crazy

Unfortunately, I can remember it like it was yesterday.

I was at the hospital - again. Missing school - again. In pain - again. And had just been told I was fine - again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way - I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life - with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system. 

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

And remember, you’re not crazy. You’re gutsy.

Jennie

Guest Post: John's Story

We have the pleasure of introducing not only a gutsy guy, but a gutsy writer and advocate for those with IBD! Make sure to check out his book!

-------------

I first noticed something was wrong when I was 18, in my first year at university, but it was to be another seven years of dramatically worsening health before I was diagnosed at the age of 25, so I suppose I was a little bit older than the average for the Gutsy Generation. It is now just over 29 years since diagnosis day, so I thought it might be worth looking back at the thoughts and fears that swirled through my head then compared to what actually happened. I should mention my diagnosis of, “Good news Mr. Bradley, we know what is wrong with you….Crohn’s disease”, was followed in the next breath with, “…and you need surgery right away”, so I had little to no time to process the implications of the illness itself as my mind was fixated on the prospect of going under the knife.

In some ways this was helpful as it focused my mind on what I think is the single most important question after “How long will I live? Oh, pretty much full lifespan then? Phew!” which is, “What will the impact be on my career?” This point of view may surprise you. After all, questions such as, “Will girls be turned off by my tendency to uncontrollably fart at the worst possible moment?” are the stuff of nightmares, but I will come onto relationships in a moment. At the time of my diagnosis, I had a job but didn’t have a girlfriend, so my focus was on the workplace.

So I walked out of his office about to take 4 months off work for what was, back in the pre-laparoscopic days, major surgery. In the two weeks between diagnosis and surgery, I realised several key things which have stood me in good stead:

My previous carefree life was over; I now faced a life of either feeling unwell, taking drugs that would do strange things to me, or having surgery, or, as turned out to be the case for the next ten years, all three simultaneously (I had 5 surgeries in the 10 years after diagnosis.)

With that in mind, I asked my GI what he thought might be the implications for me in the workplace? His reply was the worst piece of advice I thought I had ever heard in my life: “Umm, there shouldn’t be any really; I’d just carry on as normal.” No, no, NO! Normal was me never being off sick, never feeling less than 100%, pushing myself to the max to scramble further up the greasy pole. What I needed to do was to find a way to keep scrambling up the greasy pole while taking a cumulative two years off work in the next ten and feeling less than 100% and/or going crazy on steroids during the other eight. 

Ergo: I needed to think differently about my career than I had done to that point. I needed to be in jobs where I could still deliver expected results when I was feeling dreadful for months on end. I needed to be in a job where I could go to the bathroom fifteen times a day and it not cause issues. In short, I needed to accommodate the reality of having Crohn’s into my career planning, not ignore it.

Twenty-nine years later, I can report that I think I did the right thing in doing so. I ultimately had a very successful career in packaged goods marketing, rising to the dizzy heights of Senior Vice President. I didn’t get there as quickly as I might, or by the most logical route, but I got there. There were times when my health was poor I took or stayed longer in jobs that were well within my capabilities so I could still be a valued employee when I was running on 70% or less. Other times, when I was feeling well I took the risks. Conversely, I have met hundreds of IBD-ers at clinics, in hospital wards etc, and far too many of them seem to have taken the bad advice, ploughed on regardless of their new circumstances, and ended up not only losing their jobs but failing to get a new one. For me Crohn’s has been life-altering; for those poor souls it became life-ruining.

Moral: you are probably going to have Crohn’s or UC or a bag during your entire working life and, with a bit of forward thinking and flexibility, you can still achieve your dreams, they just might not be the same dreams you had before.

Relationships was my second worry after career. Will I find someone who can live with the illness? Can I still have children etc etc. Here I will be less prescriptive: I don’t think my Crohn’s made any difference. I got married two years after my diagnosis when I was experiencing a very ill phase, and our 19-year-old daughter is just starting her second year at U of T. Of course in those two years I obsessed about “How and when do I tell someone about my Crohn’s?”, “What if I keep dashing to the toilet while we’re at the movies?”, as those thoughts and more are inevitable. At that age we also obsess about having pimples on our noses, a bad haircut and wearing the wrong brand of jeans.

The bottom line is that you will only find your IBD a barrier to relationships if you make it so. If someone won’t date you because of your illness then thank your lucky stars you found out they were completely unsuitable as partners before marrying them. In short, the right person will still be the right person whether you have IBD or not. Your job is to not make yourself a recluse because you think your IBD will be off-putting to others.

29 years ago I was filled with foreboding and doubts about what life would hold for me. Looking back, the worries I turned into positive action were helpful, the worries that I just fretted about were unhelpful. We don’t get to choose the hand of cards life deals us, but we do get to decide how to play them. An IBD diagnosis changes the hand we have been dealt so, to me, it makes little sense to keep playing the way we were before. Changing how you play your hand to accommodate the IBD card isn’t giving in or giving up, as long as you are still playing to win.

John 

Author of “The Foul Bowel: 101 Ways to Survive and Thrive With Crohn’s Disease” and you can follow him on Twitter @Johnbradley1

Guest Post: Alex's Story #2

What's better than a guest post? A returning blogger! Enjoy - we sure did!
-----------

'Marching Ostomate'

I hear my band director yell across the field, ‘REEEEEEESSSSSSSSEETTTT!!” - that means run across the field back to your original starting position. The first thing that goes through my mind after I hear that is I hope my ostomy bag isn’t full. If any of you have ever experienced running with your ostomy bag sloshing …. Well let’s just leave that to your imagination. I am starting on my third year in marching band and Grade 11 or my junior year in High School. The last two years of marching band, Crohn’s hasn’t allowed me to march a whole season. My freshmen year I didn’t have the energy to do all the activity that marching band takes from a person. I would spend two hours at practice and go home and sleep for four. Last year, I was in the hospital for resection surgery during all three weeks of band camp. When I was cleared to practice with my instrument, I broke both heels because of my osteoporosis during one of my first rehearsals. 

This year… I am hopeful! I have gotten through two weeks of band camp which has included two 12 hour days and two 8 hour days. My feet are sore, I am shaking off my sore muscles, ignoring my swollen ostomy, but I am proud and really pleased with myself knowing this year I am fully participating in band camp – for the first time. 

What’s different this year versus the last two? I am not in the hospital – that helps.  One of the things I hear a lot at band camp is “how are you feeling?” My band camp answer this year … “I am here, aren’t I?”  The primary reason is with careful attention to my disease and my diet and a lot of effort and perseverance I am doing what I love doing with my friends.  I hurry back home after a 12 hour day to get hooked up to TPN and lipids so I can get my 10 hour window of nutrition through my PICC line before returning the next morning.  I am careful to take a few extra breaks to rehydrate, rest, and get some extra calories where I can.  I bring a cooler with extra food and the band moms are looking after me making arrangements to meet my semi-vegetarian diet at meal time.  Sounds like a lot of effort and a lot of adjustments to try and live a normal life.  Some might ask, is this worth it?  Duh, of course it is! Friends with common interests, striving to accomplish something, being part of a group, heading towards a goal …   it doesn’t get any better than this. 

Crohn’s does not limit your dreams, you do. I have always known that even with Crohn’s and its complications I could still march. Last year after I broke both heels, I came back and marched in semi-finals at Grand Nationals with my band. It may not have been a perfect show for me, but I have proven to myself once again that no matter what I encounter I can overcome it.

Alex

Guest Post: Jeffrey's Story

We just love finding IBD bloggers and adding to our guest post series! Enjoy Jeffrey's story below and be sure to check out his site!

------------------

I look in the mirror and don’t recognize the man I see there.  The grey hairs are starting to take over on top.  I always seem to have a 5:00 shadow.  And, are those wrinkles??  When did this all start?  I am pushing 40 on the outside, but inside I am still 15.  I can picture it like it was yesterday.

There I am, lying in my bed still in my pajamas.  I am sweating from my fever.  I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last.  Oh no, time to run to the bathroom.  Man, not diarrhea again.  What is wrong with me?  It’s been a week and I still feel like crap.  So, now it is off to a new doctor that my pediatrician recommended.  It is someone that is a gastroenterologist.  What are they??  

Ok, so this exam isn’t bad.  Don’t know what he found so let’s go into his office to hear what he has to say.  What is that you say…possible Ulcerative Colitis.  What is that??  How can I have an ulcer..I am only 15?  You want me to go to the hospital for a couple of days and get test done.  This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.

So, this hospital isn’t so bad.  Been here for a couple of days.  Everyone seems nice.  Oh boy, time for another test.  I have to do an upper GI.  What is that??  Ok, drink some liquid and get x-rayed…I can do that.  What flavor do I want?  Can I have vanilla or chocolate…wait…all you have is strawberry??  I hate strawberry.  Oh man, this is horrible tasting.  There is no way I can get this down.  Wait!!!!  Don’t put that tube up my nose to force the liquid down…I will drink it.  I promise.  Just let me wipe the tears away first.  I want this to be over.

What a day…oh, hi nurse.  Enema?  What?  A colonoscopy.  This can’t be good.  But you’re a cute nurse, so I’ll let you give me one.

I will get Demerol and Valium.  Ok.  They will relax me and take away the pain while the scope is in…ok.  Wait…I feel that.  Ow, this hurt.  Oh my god this really hurts.  I can’t watch the monitor because there are too many tears in my eyes.  When do the meds kick in?  Should I be in this much pain?

Been here a week.  When do I get a diagnosis already?  Here comes the dr.  Ok.  IBD.  Ulcerative Colitis.  What is all this?  Thanks for the pamphlet…but what is this disease I have??

That was my short version of how I found out I had Crohn’s Disease.  Yes, I was originally told UC but after finding a good doctor, I was told I had CD.  This was all back in the 80’s, before computers and the internet.  I had no clue what I had.  I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had.  I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease.  I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.

Fast forward to January of 2012.  I was in the middle of really nasty flare and going to the bathroom 30 times a day.  I was on Humira 40 mg every week.  I was so depressed that I had convinced myself I was going to need surgery.  I thought I was going to need a “bag” and it hit me….I don’t even know what they look like.  The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.  

And that is how I turned my life around and became an online activist for IBD.  When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am.  I have a life to live and I shouldn’t let some symptoms run my life.  I felt like I was entering a new phase with my disease.  I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone.  So that is my mission now.

When I write or talk, it is experience and advice that I spew.  I want to be able to help all the youth out there that have this disease.  I know what it is like to be a kid and have all the problems that come with IBD.  Inside, I am still that little kid.  Because I lost my childhood at 15, I chose to hold onto it mentally.  I have the knowledge of an adult, but the drive of a kid.  I like to joke around.  I like to explore.  I like to have a fun and be carefree.  There is time later to act like an adult.

I started  www.aguywithcrohns.com with one thought in mind…to help anyone that needed it.  I try to give out advice on what I have learned throughout my life so others can learn from it.  I want people to know that they aren’t alone and if no one else listens…I do.  I am here to listen and help.  Doctors don’t seem to truly care much.  Friends seem to get annoyed to fast.  Parents just want to do what they feel like they should be doing to help, whether it works or not.  But online friends seem to listen no matter the situation and are always there.  That is who I am.  I am only a keystroke away.  I might not always have an answer but together we can find it.

As I look back into the mirror, I can still see that 15 year old.  The lines are growing.  The hair is changing.  But I can see him in the eyes.  I see the twinkle.  I have made it 24 years with disease.  No matter what happens…I can live life.  The disease hasn’t beaten me…and it never will.  And that is the best advice I can give anyone….Never let it beat you…you are too strong.

Jeffrey

Guest Post: Michele's Story

It is completely refreshing to find someone living with IBD who epitomizes optimism and energy. Luckily, we have a blog from one such person: Michele is the President of the 3C Foundation of Canada, a member of Gut Inspired, and someone who has a strong voice that is instrumental in raising awareness about IBD.


All we have to say is, go Michele!
----------------

I love presents!  Maybe that’s why one of my favourite expressions is ‘life is a gift, unwrap the ribbons.’  I was reflecting on this expression recently as I sat on my dock taking in the beautiful sunset… in my ever optimistic quest to ‘unwrap the ribbons,’ I took some time to think about the good things in my life that have come about as a result of my journey with Crohn’s disease. 

As I metaphorically untied the ribbons on my ‘gift’ of Crohn’s related life experiences I was filled with a sense of gratitude.  I can honestly say that although it has been a difficult path, my journey with Crohn’s has also has given me a great deal to be thankful for and I have learned some valuable life lessons.

One of the most important lessons I have learned is to embrace the fact that Crohn’s disease does not define whom I am, and to acknowledge that it plays an important role in shaping me as a person.  My life path has changed considerably since being diagnosed with Crohn’s disease and yet I am grateful for the opportunities I have experienced as a result.  I am extremely thankful for some of the most remarkable, extraordinary, talented, successful and beautiful people I know who are living with IBD as they have touched mylife in a significant way and left footprints on my heart forever.

I have learned to choose not to be offended by others, or be ashamed and embarrassed by this disease - I have come to realize that these emotions (which could easily consume me) are experienced only when I allow them to.  Keeping perspective on the fact that others do not truly understand and are not educated about Crohn’s disease helps me to avoid falling into a mindset of negative emotions.  Although it took me many years, I am thankful that I have learned to walk with confidence and a smile on my face to send the message to others that I am self-assured and will not be defined by this disease.  I am thankful for the awareness that although this disease may at times devastate me physically and emotionally, it can never destroy my spirit!

I have also learned the importance of educating myself about this disease, which has empowered me to make informed decisions and take positive steps as an active participant in my own health care, with a sense of control over my journey.  Sharing my knowledge with others has helped to promote awareness and I am filled with hope that educating others will change attitudes around the stigma associated with the symptoms of IBD.  Being informed has given me the confidence to overcome my once quiet and private nature in order to offer support to others.  I am incredibly thankful for volunteer opportunities that have come about as a result of living with Crohn’s disease.  It is exceptionally rewarding to be a part of making a positive difference for others and I am always amazed by the fact that even though I set out with the intent of helping others, I am the one who walks away feeling inspired and blessed by those I’ve had the privilege of working with. 

While savouring the moment the sun finally dropped behind the horizon, I felt gratified that I had taken the time to ‘unwrap the ribbons’ and reflect upon the good things that I have experienced as a result of living with IBD.  Each life, even one touched by Crohn’s disease, truly is a gift… unwrap the ribbons!

Michele

Adulthood

On the day before my 21st birthday, my Mom informed me that I was now an adult and that I didn’t have to listen to my parents anymore (folks, you heard it here first!). I laughed at this, and inside I thought, can I really be turning 21? How is that even humanly possible?

As part of my summer research job, I was headed out of town on my birthday for a project. Everyone at work was apologetic about the untimely trip, my parents disappointed that they wouldn’t get to spend the day with me. I was unperturbed - completely happy and willing to travel for work on my birthday. And here is why:

I spent my 16th, 17th, and 19th birthdays in the hospital. I couldn’t eat the birthday cake, and all I wanted to do was stay wrapped in my covers and continue to watch McDreamy save lives on Grey’s Anatomy. My 19th birthday was particularly memorable. I was just under two weeks away from my ileostomy surgery, which I was so excited for I probably qualified for some diagnosable mental condition. The GI finally convinced me to try some pain medication, after I had refused it for some time (note: not because I was stoic, because I’d never had it for IBD before and thought it would as effective as Tylenol for a massive head injury). And once I had the pain medication, life was awesome (pain control, where had you been all my life???). I was still in pain, but all of a sudden I didn’t care so much and my eyes just went a little blurry and I was instantly more comfortable. Everyone I had possibly ever known (and maybe even some people I didn’t know) came to say happy birthday and give gifts. I promise (sarcasm implied) if you want gifts for 6 months, have your birthday in the hospital and then get an organ removed. An appendix will do, no need to go for the colon. So if you can imagine me, sitting on my bed, happy as a clam and slightly (or okay, mostly) out of it, with gifts piled around me and people everywhere - then in walk people with guitars and they start singing happy birthday. I asked my parents about this, I swear I didn’t hallucinate it. As crazy and silly as that memory seems in hindsight, the very idea that two years later I could be pain-free and working on my birthday flabbergasts me. I was too sick to work, too sick to travel, too sick to enjoy my birthday.

So cue my 21st birthday: I was serenaded with happy birthday at work (being sung to by the chief cardiac surgeon was hilarious), piled in a car with my co-workers, had dinner, went for a run, watched the Olympics, and went to bed. A normal day. An ordinary day. But those of us with IBD know that normal is extraordinary, and days like that don’t come as easily or frequently as we’d like. As I was running, I took this photo and couldn’t help but smile at where I’ve been, and more importantly, where I’m going.

I know my future with IBD still exists, there are still uphill battles to lose and conquer, scars to earn and strength to be lent to me by those I love. But today, I am 21 and things are bright and shiny. 

Fingers crossed, eyes wide open - adulthood, here I come.

Jennie

Fancy Words + Dysfunctional Bowels = Gutsy Studying

Here is a disclaimer before you continue to read: I strongly dislike standardized test. Strongly. But I can diplomatically acknowledge their role in the admission process. As if the SATs weren’t annoying enough, here I go, trudging into the unchartered territory of the GREs and fancy words and algebra. Woo freaking hoo.

And so, in an effort to study and complain all in one, I’ve decided to write my own sentences using the crazy words the GRE wants me to know, but in a gutsy style of course. To anyone studying for the GREs along with me - I salute you and here are some ways to remember the following words:

Accretion [growth, increase by successive addition]: The accretion of my home pharmacy has taken several years and will likely continue until I will require a separate house just for meds.

Anodyne [soothing]: Having a heat pack when I’m sick is not only necessary, but I find the warmth has an anodyne effect on me.

Apogee [farthest or highest point]: When I was in Peru, it felt like I was at the apogee of the universe. 

Belie [to give a false impression of]: I am often frustrated that my exterior appearance belies the disease brewing inside of me.

Boor [a rude person]: People think do not understand IBD are such boors.

Capricious [changing one’s mind impulsively]: When I was on Prednisone, I wanted to eat everything and was capricious when it came to deciding what I wanted first.

Alas, I must continue to study - ah the things we do for graduate school! As you might have noticed, I’ve only worked through the A, B, C’s of the book so far, so don’t worry, I’ll be sure to share my words!

Jennie

Guest Post: Alex's Story

We are so excited to share another amazingly gutsy guest post! Meet Alex - a force of nature who is never going to give up. He blogs for LOOP and his optimistic attitude is contagious!
------------------------

'Zip Lines, PICC lines and Tofu: Facing the Challenge'

I looked down from 50 feet in the air from the top of the climbing tower; got ready to be hooked up to the zip line and psyched myself up to jump into the empty air below me …. What was I thinking!  I am afraid of heights.  As a kid I refused to go on the rope mesh bridges in jungle gyms that you may find at McDonald’s, what changed? Maybe I have learned to conquer my fears; maybe I am getting braver with age; maybe I’m crazy; maybe my Crohn’s has taught me that I have to challenge myself, push myself and face my fears – let’s go with the latter.

Last week I spent the week in Fenton Michigan … it was great opportunity to meet other kids my age with the same challenges I have had to face and openly talking through our challenges. It could have been the friends that I had just met that applied a little peer pressure on me to face my fears.  Maybe it was all of the above that gave me the security to zipline … four times … over a creek at CCFA’s Camp Oasis.

Crohn’s has given me courage there is no doubt about that. When you get compression fractures in your back at age ten and can still remember images of not being able to get out of a tent for hours because of those fractures your perspective on life’s challenges changes. The smaller or simpler challenges don’t seem as difficult and as hard to overcome after that. 

Crohn’s has a way of breaking down those mental barriers or fears. I was always a picky eater as a kid. And the food group I disliked the most was the vegetable group. Broccoli, salad, brussel sprouts, you name it, I wouldn’t eat it. Two months ago, my nutritionist told me I should go on a semi-vegetarian diet. Ahhhhh!  She said it would really help? She also said that she had tried it with one other person before me who gave up on it. Since starting to eat again, (for the past two months) I haven’t eaten meat, I eat eggs and salad regularly along with other vegetables. I even have learned to like tofu and things I didn’t know existed, like quinoa, hummus, and couscous; these have become staples.  Foods that I would never have eaten before! And thanks to me facing up to my pickiness, I am eating again (after five months of bowel rest) and I am thriving. 

I always love showing people my PICC line scars. Why? As a child, there are stories of me curled up in a ball, hiding behind the examination table when the nurse came in to give me a shot. The story would not be complete without the part about the nurse having to walk out of the room to hide her laughter. She was laughing because even though I was scared of the needle she had in her hand I was being so polite saying ”No thank you, no thank you.”  Why the sudden transformation from hiding behind the exam table to showing off my PICC scars? Sadly, I am too big now to fit behind the exam table, but the other reason is IBD. When you have had countless IV’s put in and have shots of Methetrexate every week, you’re challenged to get over your fear of needles. 

With a life toughened by Crohn’s, I have been given the courage to challenge myself mentally, and physically. My stubborn way of always pushing through things and challenging myself may be my mother’s nightmare, but it is the best way, in my opinion, to make the most of life. 

Alex

The Milkman

By all accounts, I am my parent’s daughter. Their names appear on my birth certificate, there are photos of us at the hospital when I was a shriveled little raisin of a baby, and sometimes in the right light I’m told I possess a certain attribute of theirs. But I have a sneaking suspicion I was left on their doorstep. Of course this is all in good fun - I love my parents - but sometimes I wonder if I’m the milkman’s daughter. I often joke that I don’t look like anyone in my family, only the dog since we both have curly hair, though I’d be slightly concerned if we had a similar parentage. 

Even though my siblings (generally) love me, I can’t help but feel different than them. It’s not just my body’s inability to function, but they are completely cut from the same cloth, they’re a pair, the counterparts of one another. I, on the other hand, could have been the alien child adopted and groomed to fit in on earth.

So here are a list of reasons why I should send a belated Father’s Day card to our milkman/why the dog may be my actual brother:

1) My brother and sister both have brown eyes, I have grey eyes. Let’s hope it’s a recessive gene, or else I am adopted.

2) The dog and I both use poop bags.

3) I can effectively eat my feelings through copious amounts of salad while my siblings feign allergies to all things green and grown from the ground.

4) My siblings can both sing, I am incapable of carrying a tune in a large bucket.

5) They love Tim Horton’s, I’m impartial (yes, this makes me a bad Canadian).

6) Their bowels work just fine. Mine, well, you know the story.

7) The dog and I like to run (albeit after he’s been tricked outside by yours truly).

8) They care little for cleaning their rooms and keeping tidy; my room is sterile enough to perform surgery.

And thus, I rest my case. I am the milkman’s daughter. The only complication is that I love my parents and wouldn’t trade them for anyone else and if I were the milkman’s daughter, being allergic to dairy would be highly inconvenient. Being the only person in a family to live with Crohn’s can be choppy waters to navigate, they hear me talk about bowels and ostomies way too often to be normal (Hence my brother buying me ‘Everybody Poops’ for Hanukkah a couple of years ago - ah the things you get when you have a bowel disease and an older brother). But they love me and support me and encourage me to be my gutsy self. I may be the odd one out when it comes to health in the family, but I never feel like the odd one out - and heck, that’s the most important thing of all.

Jennie

Guest Post: Matt's Story

A diagnosis of IBD sometimes makes us think that there's a set of limitations to living. We love to hear gutsy stories of IBDers who pursue their dreams and become fantastic role models for us all. Cue Matt's blog below - see how he is living above and beyond his disease.

-------------

'Arctic Adventures & IBD'

Anyone who has IBD knows that long distance travel (or travel at all) can be an anxiety filled and sometimes terrifying experience. These feelings are usually made worse during travel because bathrooms may not be easy to access and sometimes aren't even there at all. I've personally dealt with this problem and overcome many of these concerns during my trips to Canada's high Arctic, where I've travelled to for work.

Standing next to our toilet less plane!

I suppose I should start with my IBD story (although so many of ours are the same). I was hospitalized and diagnosed three years ago with severe pan-colitis. Like many twenty-somethings, I chose to ignore the several warning signs that I was spiraling into something very severe. Thankfully during my stay in the 'big house' I was put on Remicade which put me back in remission (more or less). After this experience I slowly got back to work, and about six months later the opportunity came up to go to a place called Arctic Watch, which is a wilderness lodge 500 km above the arctic circle in Canada's high arctic. How could I say no?!

Standing next to the Northwest Passage (and a Bowhead whale spine)

After packing all my expedition gear and buying an extra couple of pairs of long underwear to stay warm, I flew out of Ottawa headed to Yellowknife. Flying can be a pretty stressful experience for us IBDers. I made sure to book seats close to the washroom and made sure I was sitting in the aisle row. All of that organization couldn't prepare me for the shock of realizing our charter from Yellowknife up to Arctic Watch  had no washroom! We were going to be departing on a two hour flight to Cambridge Bay and then a two and a half hour flight onto Arctic Watch, and I was nervous. I put on my poker face and hoped for the best; there was no turning back now. The fight turned out to be an amazing experience (as the view from above of Nunavut is beautiful) and accident free!

Hard at work shooting video at the Thule historic sites

My second large shock came when we were headed out for a day on the land. We would spend the days watching belguas, tracking muskox, and even trying to track down polar bears.  There were certainly no toilets out on the Tundra, but there also weren't even any trees to hide behind! The approach I took to help me through was staying focused on my goal of shooting the best possible nature photos and footage. Getting my mind off washroom anxiety worked and I made it through the entre week with no accidents (but maybe some close calls)!

Shooting photos of Muskox (in the distance)

To sum up my experiences; it may be scary, very scary even, to go to a place that can't provide adequate washroom access. But, that shouldn't be a reason not to try new things and push yourself outside of your comfort zone. I realize this doesn't apply to all of us IBDers of course, but as I write this (sitting on a plane headed back up to Arctic Watch for the second time) I can safety say: "IBD doesn't stop me!"

Matt

http://twitter.com/mattdavidson

http://arcticwatch.ca

http://bv02.com