Friday, January 28, 2011

"ET Phone Home"

Sometimes it feels like life exists in two universes - the real world, and the hospital/IBD/sick world: the latter is my current residence. A simple ‘snip and clip’ - well, okay, an ostomy - should have done the trick, but my bowels weren’t done with me yet. And so, I have decided to grace multiple ERs with my latest GI woes.

I suppose it’s like hearing your name in a crowd - you could be totally consumed in listening to music or talking to someone, but if you thought you heard your name, you would somehow hear it. Or like a second language: you don’t need to think about it all the time, but you are fluent in either language. I feel that way when it comes to hospitals - as soon as I’m back in this environment, I remember that the blood pressure cuff can’t go on the same arm as the IV, the fancy, technical name of my surgery, the warning speech about my thick skin/rolly veins, and on and on and on. It’s as if I’d never left. The medical world went on, despite my brief vacation, the same beeping noises of IVs and kids in oversized Johnny shirts.

While it is an outright lie to say that I’m alone here - my cousins and friends would likely protest - I’m in a different city (and country for that matter) from my parents, and in that sense, virtually alone. My Mom suggested a skype date, which seemed like a rather odd application to use it to ‘visit’, but a reasonable one nonetheless. I wish there was a better way to call home, or be with my family, but such are the constraints of going to school ‘abroad.’

I’d like to think I’m a glass-half-full kind of girl, I smile at the nurses despite the multiple blood draws stabs and try my best to be of medical help to the doctors by using their language. This is my second home - regardless of city, country, etc. - a hospital is a hospital is a hospital, and it may be another universe, but it’s home.

Unlike ET, I’m not stuck on the wrong planet - I’m just stuck in the middle of both worlds. But soon I will be back in the ‘real’ world, where skype is meant for catching up, food is allowed to be eaten, pain is non-existent, IVs don’t exist - and blogs are meant for happy reports of a life despite IBD.


Tuesday, January 25, 2011

Getting into Training Gear...

Setting the mentality to get in the game (of life, that is) and JUST DO IT can be hard to do. As you know, I've begun training a bit more intensely for the Death Race and the Ride to Conquer Cancer - half the battle is getting my mind into it and waking up at 5am when the alarm goes... instead of talking myself out of it... and making excuses.

I read this pretty cool book lately, called The Peaceful Warrior by Dan Millman. Its one of those inspirational ones - Im a sucker for that kind of stuff. I saw the movie about 5 years ago - its about a gymnast and how he overcomes many obstacles in life. Its inspiring though. The main characters Will-power is whats admirable. Nike's slogan is a real 'to-the-point' sure way of getting things done - "Just do it". Half of the issue in accomplishing things is just doing it.

Its time to apply some 'just do it' in my life. Sometimes we're our own worst enemy, and sabotage ourselves with that inner voice that says: "you cant do that, you have Crohns", "you need to take care of yourself and rest" , " what if you get sick?" .... But you never know until you try... and most times, its not about doing it perfectly, but just doing it, that matters most.

Share your story - or send me an email if you dont feel comfortable posting:



Friday, January 21, 2011

Tuesday's Child

As a society, we tend to value dates. Birthdays. Anniversaries. Commemorations. But do we always remember the day of the week? Unlike dates, the days are recycled, like how many Mondays have we been alive for? My answer: over 1,000.

Outside the nuclear medicine department at the children’s hospital, they have collected the days of the week poem in paintings. A few weeks before my diagnosis, I moved through those halls with my Mom and stopped to look at the paintings, wondering what day I was born on. When we went home, we figured out that it was on a Tuesday. This was especially fitting since the ‘Tuesday’s child is full of grace’ painting was of a ballerina, something I loved to do. We contacted the painter and got a print of it, which still hangs above my bed at home.

Most eventful things in my life have happened on a Tuesday. I was born on a Tuesday. I had eye surgery on a Tuesday. I was diagnosed with Crohn’s on a Tuesday. I had my ileostomy surgery on a Tuesday. I am Tuesday’s child.

Sometimes I wonder where or who or what I would be if it weren’t for all the Tuesdays in my life, if I hadn’t had to deal with all of my ‘Tuesday’ issues. I wouldn’t have an ostomy, I wouldn’t be educated about IBD, and I wouldn’t be writing this. I am hesitant to jump on the ‘everything happens for a reason’ bandwagon, because I don’t believe that. I don’t believe that anyone should be in pain, that should never be the gateway to something better. Instead, I believe that we as human beings are inclined to find meaning in what we experience. For me, having IBD was an opportunity to get involved and make a change, I have found meaning in IBD, but I don’t think a disease or an event comes with a prescribed meaning like a fortune cookie. That’s what we have to figure out for ourselves.

Every day, there are a million things that happen to us that in some way, conscious or otherwise, influence our lives. We have the power to choose the meaning for ourselves, whether or not we want to make something paramount or make it unimportant.

We have the power to write our own stories with the words we’ve been given by the world. What story are you going to tell?


Tuesday, January 18, 2011

John Vella's (Bodybuilder) Inspiring Story!

I was diagnosed with Crohn's when I was 17 years old. At the time I was deathly ill. I weighed in at a whopping 82 pounds. My skin looked awful, and I barely had the energy to go up a flight of steps. The cramps were constant and crippling. Trips to the hospital were just a part of life. It wasn't pretty! 2 surgeries and dozens of lengthy hospital stays later (plus slews of harsh medications that had their own set of lovely symptoms), let's fast forward to today. I consider myself totally cured. I am on no medication whatsoever, and I am 160 pounds, and preparing to compete in my first bodybuilding contest. I have also been dabbling with powerlifting with a 495 pound deadlift, and a 315 pound bench press, so that too may be on the horizon should I decide to seriously pursue it! I have also participated extensively in Submission Grappling & Brazilian Jiu Jitsu. (Not exactly the world's most gentle pastimes) I say this humbly by the way! I say it not to boast, but to inspire anyone who walks in the shoes I did when I was a teenager.

Obviously the nutritional aspect of my healing from Crohn's is paramount, but It is a massive topic for another discussion.

What I did not realize at the time when I was ill were the mental and emotional roots of Crohn's!

There are a few key factors I would like to bring forward. The first one is our mental attitude when dealing with this challenge. For the longest time, I would consider myself the victim for obvious reasons. "Why me? I am just a 17 year old kid trying to figure out life as a young adult! This is daunting enough without any added challenges piled on!" We develop a victim mentality mindset. This will also be encouraged by most of our loved ones as well as our health practitioners. They are simply trying to be supportive, but it gives us an easy fall-back position to carry on with the same "I'm defeated attitude".

One day back when I was 17, I was sick and tired of being sick and tired and made a decision. I said to myself "No longer is it OK for me to just get by. I am getting big and strong, no matter what!!!" For me the fascination with power and strength was embedded in me from the time I was 9 years old watching cartoons like He-Man, wrestlers like Hulk Hogan & movies like Conan the Destroyer. So I made a decision at 17 years old, that I was going to somehow get big and strong. No ands, ifs, or buts. Crohn's or no Crohn's, It was going to happen!!! I'll never forget the day I told this to one of my doctors. He said "Oh John, you may be able to get in decent shape, but you'll never get really big" I simply used this as more fuel. He wasn't trying to put me down; it was simply too big a stretch for his paradigm to accept! So in summary, you MUST believe in yourself and change the way you view yourself! You DO NOT have to be identified by your Crohn's. Screw that!!!! Set a goal regarding your physical body that gets your juices flowing. Visualize the body you desire to be in, and do not let anyone tell you otherwise. Go through life with THAT attitude all the time, and magic will start to happen in your life. It truly is empowering, and the only limits we have are the ones we place on ourselves!

The second factor I have found from my experience speaking with other Crohn's patients, is they tend to internalize anger. I was always the type of kid who was really nice to everyone, but also never knew how to say "no" and be assertive. I don't know why, but it always has been a challenge. It still is today!
This can often lead to us becoming silently offended when dealing with assertive people. We have a hard time standing up for what we want. What happens then is us internalizing anger. It is a common theme I have had, and that I have realized many other Crohn's patients have. To change our behaviour overnight is simply not realistic. We have lived our lives by certain themes, and I am a huge believer in those themes manifesting themselves in physical form.

Last year I had the good fortune to learn an energy healing called Emotional Freedom Technique. (EFT) This has been quite helpful with digging deep into the roots of my behavioural patterns. I highly suggest investigating this as a powerful complement to a new nutritional program, and a perfect companion to your new positive attitude about your body and what you WILL accomplish. There is more information regarding this on my website:

Feel free to drop me an email for further information!

I hope this was helpful to anyone reading this. Remember, you have the power to transform your health. Take command of your life, make that decision, and never ever give up!


Friday, January 14, 2011

A Family Man

However slightly crazy, I always found an ounce of comfort in being sick. This feeling, I’ve decided, is because life exists in opposites - awake or sleeping, full or hungry, sick or healthy. In some way, I considered illness the price to health - like eating your broccoli before dessert or something - and rationed that sickness and pain now, meant more health later. Being snuggled in my bed as family fetched food and heat bags and whatever I called for, it was part of being sick, it was the environmental part of being ill.

I have a great-Uncle (we’ll call him Uncle Axel) who has Parkinson’s. He has been a surrogate grandfather to me as my only living grandfather lives far, far away - I have had dinners and laughs and hugs with him for my entire life. I suppose I remember a spry (though all terms are relative) Uncle Axel, but now his body has shriveled and become a prison for him, the man crooked in his chair, his hands quietly quivering. He is sick.

The comparison that older people become like babies has been made before. People talk louder and slower around him, they no longer ask him deep questions but rather, “what do you want for lunch?” I wonder if the questions and tone are patronizing to him, or comforting.

As I was leaving his apartment, his wife (Aunt Ruby we’ll call her) attended to the ringing bell that meant he needed assistance and took some food to him. The gesture both pleased and disturbed me. I was unnerved by the inevitability of his disease and his life - my sense of worse before better did not apply to him, this ‘comforting’ sense of being in bed was not comforting at all, because it was final. It was it.

How are we supposed to feel? Do we ignore these painful things and move onto happier thoughts, do we ruminate in them, do we attempt to improve the situation? He is still a person, disease or not, he is still the man that is married and has four grown children, seven grandchildren, six great-nieces and nephews, and on and on and on. He is the last remaining member of his immediate family. He is a survivor. He is loved. He is my Uncle. And he is dying.

I feel helpless and little in relation to Uncle Axel. I love him dearly and there is no longer the time to express these thoughts as eloquently as I wish, no ability on his behalf to sit still and listen and respond. How will he know how much he means to me?

Disease is different for everyone. It isn’t about what disease we have, but what disease or issue ‘has’ us - how much we fight (depending of course on how much we are able to do so), how much we understand, how much we are at peace with ourselves.

Tell the people you love that you love them. Thank the people who need thanking. Help the people who need it. Applaud the people who deserve the applause. Every moment is dually a moment gained and a moment lost - but by no means does it have to be a worthless moment.


Wednesday, January 12, 2011

Stress Be Gone!

Everyone’s Disease is different. Some days that’s hard to believe when you’ve found someone that you can talk about everything you’ve gone through with and they can relate to a lot of it. Other days it’s easy to think that you’re alone in everything you’re going through. I know I’ve had my fair share of good days and bad days. Days when I’d rather not deal with anything, and days when I feel like I can take on the world.

For those who don’t know, I’m on Remicade, and for me it has been nothing short of a miracle drug. It’s finally put me as much into remission as I think I’ll ever be. I can’t last the full 8 weeks that my doctor would like me to last; instead I’m lucky to last 6 weeks. Normally the last week to two weeks are, for lack of a better word, hell! This time, I was amazed. I almost forgot about my Remicade infusion coming up because I only got pains 3 days before my appointment. I was astonished to say the least; this was something I was not used to. I stopped for a minute the other day and tried to figure out what I had done different. At first I didn’t really know what might have made this 6 weeks bearable, then I realized there was no stress. I didn’t have schoolwork, assignments, and tests. I did however have my whole family home for Christmas, I got to attend my sisters beautiful wedding on New Years Eve, and for once, I had someone by my side for everything.

For me, stress is my biggest flare up trigger. The slightest stress normally causes slight pains. I’ve found many ways to try and manage it, be it taking a nap, reading a book, watching a movie, listening to music, or just going for a drive. Generally just something simple that relaxes myself and takes my mind off of everything. Sometimes that’s not that easy to do, and sometimes my stress definitely gets the better of me. Friday was one of those days. My Remicade infusion from Friday was postponed until today, Wednesday, because of a slight head cold. I feel so frustrated when I go in for my infusion and I’m made to go through the ER before I can get my medication. It’s obviously not the first time this has happened; I think this is the third time since September (which would be every infusion since the summer). First my liver counts were off, and then my white blood cell counts, and then a head cold. I seriously think my body is out to get me.

I think finding the humor and positive side is what gets me through days like that. That’s not all that gets me through it though. My family, and friends definitely play a huge role in me handling my disease as well as I can. Like tonight, I was having fairly bad pains, and I was laying down watching a movie with my boyfriend, he knew I was in pain, and when I am, I curl up and rock. Instead of constantly asking me what he could do and if I was ok, he just cuddled me and rocked with me. Something so simple made me so happy, I knew he wanted to do something to help me, and to be honest, that was the best thing he could have ever done for me!

“I have Crohn’s Disease, Crohn’s Disease does not have me!”
~Colleen Lynn

Monday, January 10, 2011

The Social Aspects of IBD

Inflammatory bowel disease is much more than the physical symptoms. There's a whole host of emotional and mental symptoms that come along as well.

This last saturday I woke up and walked up the street in the nice snowfall - it was a winter wonderland! I felt like I was walking through a winter postcard - snow covering all the evergreen trees and fresh white snow up to my shins. It was beautiful :)

I met with a person doing research on the social aspects of IBD (and other chronic illnesses). I was helping by offering my experience for the study. It was the first time that I truly got to speak openly about the social aspects, the emotional aspects and the mental parts of IBD. Since I first began experiencing symptoms at age 9, I've had my teens and now my early 20's to have my fair share of experiences... and I believe they play a role too in the overall management, but sometimes, even I overlook them.

I've noticed many similarities over the years - especially regarding relationships and friendships. I found stress to be a mega trigger that completely set me off balance. I noticed I may have some perfectionist tendencies that add to this stress, and thats probably why during all of university, I was lucky if I made through one exam period without getting seriously sick... I'm eager to see how this research will unfold and what will be found because there is so much that cannot be seen on the outside that is a part of IBD.

Share your experience?
Any cool research you can share in this area?

Join Blogger and become our friend and write a response! :)

Ash :)

Friday, January 7, 2011

The Flash

In the past few weeks, I have unzipped my pants around a select group of people.

Let me back up.

I unzipped to flash my newest pseudo organ/accessory. When did I ever think I would be doing this? Oh right, never. People want to see the mysterious bag that has taken up space on my belly that just had it’s 21st week birthday. They marvel at the size of it and the invisibility, so to speak, when I zip back up my pants and you can’t see anything. As my Mom says, “You can’t even see it when you wear skimpy clothes” - which, for clarification, means yoga outfits and not, in fact, skimpy clothes (though you wouldn’t be able to see it anyway).

For a sort of a polite code, my sister and I have devised a strategy for communicating the fullness of the bag in public. She’ll lean over and ask about ‘the baby’, to which I reply either, ‘first trimester’, ‘kicking’, ‘full term’, or ‘needing to be born’. This makes her laugh, I pat the little bag baby and off I go to the bathroom to ‘give birth.’

Lots of people have questions about the ostomy, or simply have no idea how it actually functions. I like to explain the appearance of the stoma by a comparison to folding down the top of your socks, or sometimes a very vague reference to those little circular rubber pieces that can be snapped so that they fly off the table - but no one seems to get that reference. I explain the one-piece and two-piece systems, which admittedly sound like a bathing suit collection. I make light of the ostomy, sharing my middle-of-the-night trips to the laundry room to wash my soiled sheets, the inability of some insurance people to know that an ostomy is not a prescription, and on and on. It makes them laugh, it makes people comfortable, and it gets the point across.

When showing a cousin the bag, she held up her hands and said (frantically), “Don’t show me the intestine!!!” Of course, I didn’t snap off the bag to showcase my gurgling stoma, because a) I didn’t want to ‘go’ on my bedroom floor and b) everyone has their own comfort levels. It’s one thing to talk about IBD, and it’s another to want to see an intestine on someone’s abdomen.

I wasn’t always comfortable with having Crohn’s - that’s an understatement - for what felt like a very, very long time, I would was the absolute farthest thing from being comfortable with my IBD. Things change - the seasons, the years, your height, your medications, your organ count, and your outlook (to name a few). I am so comfortable with my IBD and my ‘baby’ now, and even prouder to say that I have them and I am who I am.


Monday, January 3, 2011

A New Year! Lets set some goals!

A new year has come and we're delving more and more into the future. Sounds pretty exciting to me. Its means new opportunities and relations to add to our lives.

Each year my sister and I always make a long list of 'goals' we'd like to achieve. This year, there's a bunch on my plate, and although I don't know if I will be able to do all these things I'd like to, Im going to do my very best. Through the CCFC and the publications of these blog posts I've been meeting some wonderfully amazing people with IBD! Like... super amazing people! People that are so giving and motivating and encouraging... their care alone makes me tear up!

Im a personal trainer, and I know what it takes to motivate others to get things done, whether its a workout or fitness regime or even some basic life coaching or nutritional guidance... but i must admit, im weak when it comes to motivating myself. Its no problem for me to work out and stay active (as long as my energy is there)... I love the gym, and thats why I wanted to become a personal trainer. But As far as finding ways to balance my life - this I find difficult. Maybe I need more of a plan and to stick to it regardless of whether or not I want to 'add' to the schedule by helping someone out, or giving my time to them... thats the thing: things come up and I always say 'yes' ... How do I learn to say 'no' without feeling incredibly guilty? maybe some amazing person out there will read this and have some insight to offer ;)


back to the goals list! Im curious to hear if anyone else does this same thing: makes a list of goals for the new year:

1. 200km Ride to Conquer Cancer: My sister and I have signed up for our 3rd year of doing the Ride to Conquer Cancer - where we Cycle from the CN Tower to Niagara Falls - a 200km bike ride - Its really awesome! We have to raise a minimum of $2500.00 and this money goes to the Princess margaret Hospital Research Foundation. I do this for my best friend and sister, Courtney (aka. Tunie :P ) who had cancer and conquered it about 5 years ago when she was 18... Holy smokes is she ever an inspiration to me! ( ) My Bio is here:

2. 125km North Face Canadian Death Race in GrandeCache, AB: My boyfriend did this last year with his other personal trainer friends from Goodlife. They did amazing! Unfortunately, I was pretty sick at this point, but i went to support him... Now that im feeling better, this is one of my dreams to do this year - this August. Its one of the most challenging run's through the mountains... pretty cool stuff. My dream is to complete the last leg (about 21km)... my boyfriend, his good friend, and myself will be running the race as a relay... and already, I've been meeting some amazing people across Canada already helping me periodize and organize my training and nutrition for this... hope all goes well :) ( )

3. Run my first half marathon... and still feel healthy after.

Does anyone have any tips to help me make these goals happen? Has anyone done anything like this and can offer insight? Has anyone checked out the IBD IDEAS program - they have organized opportunities for people with IBD and conquering the impossible - Check out their amazing site: . Also, on the FREE Crohn's DVD through the CCFC ( ) you get to hear Rob's story - He has Crohns and has/in the process of climbing the highest point on each of the 7 continents - HOLY! Talk about inspiring! But you have to watch his video clip to truly be amazed! Cheers!