Traditions

I have a holy Thursday night tradition. Okay, perhaps not so holy to the rest of the world, but come Thursday at 9 AM, Grey’s Anatomy comes on and the tradition has proven therapeutic for me.
I was thrilled to see the character of Mary, a woman who had appeared in last season’s big finale, come back to the hospital for her ostomy reversal. Particularly because I feel a part of the ostomy community, I was enthralled with her story line. The episode oscillated between a few story lines, one including a man getting a bilateral arm transplant. I understand that sewing new arms on a man beats a bag in terms of excitability, but still, both stories deserved to be done right.
I was slightly dismayed that they didn’t show a bag on Mary’s abdomen, but yet they showed the arm transplant. They didn’t explain why she had an ostomy to begin with, or any of the technical words they were using. And the worst part was that they decided to have her surgery - the one hour reversal surgery - to render her brain-dead and essentially kill her. Now, I understand that those things do happen after routine surgeries, but I was so upset for this particular character’s death.
I spent the last few minutes of the show on my feet, basically stomping in revolt, trying to take some deep breaths. I was so upset, and while I’m overly sensitive since I have an ostomy, it was frustrating and upsetting to see the continuation of the tradition of veiling GI disorders and treatments.
Still enraged by the story line, I vented to my friend and her roommate. The roommate blinked back at me when I made a comment about my ileostomy, and asked what it was. It was the perfect opportunity to launch into what the show had not - information and awareness. I explained the terms to her, allowed her to ask questions, and she sat back in her desk chair and expressed her amazement at the procedure. In five minutes I had laid the ground for a new tradition of openness about my ostomy for others.
It sounds dramatic to say that we’re fighting for awareness - but we are. It’s a battle to change the stigma and change the traditions of how people think. But we need to. And we will.
And before we know it, the useless tradition we’ve all habituated to of being sick will be obsolete, because our battle will have won us a cure.

Jennie

Laughters the best medicine...

I’ve learned to laugh, for those who don’t know me, I’ve gone through the many ups and downs of having an IBD. I was diagnosed in January of 2007, and by May 31 of 2007, well, my life had changed. I had had 5 surgeries, spent my 19th birthday in the hospital, and had spent more time in a hospital in those 5 months then I had in my entire life. (That includes visiting people) But I laughed, I made jokes, and my family did as well. My mom spent 3 months with me, beside my bed, laughing and joking along with me. I think sometimes wondering where I came up with some of the things I would say.

I’ve learned however that I’ve become who I am today because of my IBD. It doesn’t stop me from doing what I want to do, it doesn’t intimidate me, and it hasn’t molded me in any way. It has however made me stronger, made me more determined, and shown me just how lucky I am to have the friends and family I have.

I went in this summer for my sixth surgery, and by now I have a good relationship with my surgeons, I asked her, just minutes before my surgery if she could do me a favor. I got some funny looks from her, as I was calm, and very serious as I looked at her and said “If you’re going to cut me open again, can you at least make a design out of my scar?” She just laughed, got up and walked away. But it’s not just myself who laughs, my family laughs along with me, and I truly learned that after my surgery, as my three sisters sent me a Candy Bouquet, with a card reading “Dear Colleen; We hope you like you’re new hole”. I couldn’t stop laughing, and I now keep that card in my wallet!

I think laughter has been my counselor, my best friend, and my stress reliever. I have found ways of making myself laugh; I have found ways of cheering myself up. I can now look back at almost anything I’ve gone through and laugh about it, even public accidents! I think I’ll do anything to ensure that I stay on top of my disease, to ensure that I’m in charge, and laughter has been the best way so far!

“I have Crohn’s Disease, Crohn’s Disease does NOT have me!”
-Colleen Lynn

Support is Awesome!

When friends, or even just people you meet for the first time, understand what you're going through this is an awesome feeling. Or for me it is. 2 weekends ago I attended the CCFC Congress weekend and got to meet this year's amazing Youth Advisory Council - girl power! I've just started Humira not too long ago and i've been feeling some side effects - mainly really bad headaches. At the YAC meetings I wasn't all completely 'there'. My headaches made me feel spaced out and dizzy. What was really great was as soon as I mentioned this, everyone knew and I felt they all understood (all the YAC girls, anyways) and they were really sweet to go out of their way to make sure I was feeling ok, one even gave me Tylenol (I should keep this in my purse :P ).

I know this probably sounds like something small, and maybe we expect this from everyone, but when you've experienced what it feels like when people don't understand, and still aren't sure if they can 'catch' IBD, you really appreciate the people that do. And I'm so grateful for that. Just getting started on Humira has been an incredibly scary time for me... but it's made it easier having friends and family that truly understand what you go through with IBD and know how to be there for you. It's great to really harvest those relationships with the people that understand, and tell them how much they mean to you (YAC... you mean alot to me :) ). Friendship and support like this is worth more than gold... to me anyways :P

Hugs,
Ashley

Banana French Toast

I’m sure I’m not the first amateur philosopher to contemplate the speed of time. It’s crazy how fast time can pass and how slow it can drag on.

I thought about this as I went to my favorite breakfast place with my best friend this morning. The restaurant, or more diner, is a little hole in the wall, barely four tables squeezed into the back, an itsy bitsy bathroom hidden in the kitchen. We both order the same thing every time, my order omitting the dairy from the french toast. As we ordered this morning, the waitress grinned at us, took the menus, and genuinely welcomed us back.

My friend and I laughed at this, bemused that they had remembered our faces and our chronic orders. And I began to think about the different times I had been there last year.

There was a time when I was very sick last year that I was fed up with eating in my room and not being able to do anything. So I readied myself with underwear in my bag and was prepared to have an accident in public, if only I could be out in public amongst the living. I ate where I wanted to eat, did what I wanted to do. Now, this wasn’t necessarily the smartest thing to do, but I did it anyway. I can recall sitting at the breakfast place and running to the bathroom every few minutes, almost completely depleting the toilet paper supply for the whole place. Another time, my GI called me as I sat there with my hot french toast. I had to come in to get a test, and so after breakfast my friend and I proceeded to the hospital.

The last time I’d been was with my family before they took me home for summer break. And you feel like you always feel before summer break: relieved that the year is over, excited, older, and on the verge of something different. Only, I thought that the something different was my new medication and not the impending surgery that I would soon face.

Throughout my medically-induced food drought this summer, I dreamt of the french toast that I would eat, only wanting to be healthy enough to sit with my friend, eating our favorites, and laughing. At times during the summer, it seemed as though I would never get there, but it still kept me going.

Even though it took us almost two months to go and have breakfast there this semester, hearing ‘welcome back’ seemed like the best way to be officially and fully inducted back to Boston for another year of school. I am finally back.

When I finished the amazing french toast and looked up at my friend, with her polished-off plate, I smiled, knowing that I would be back here throughout the year, ostomy on my abdomen and health on my side.

Jennie

In a Perfect World

I have a really good friend who, whenever I am angry, sad or confused, asks a really great question. He’ll say “Lesley, in a perfect world, what happens next?”. It’s so great because it allows me to get to the base of my problem, or at least, what I want to be the solution. My answer could be anything from “I would get an instant apology” to “Everyone would forget about this and we’ll go on as things were”. Answering that question brings clarity and peace to my mind, and I almost always feel better after. Almost. Sometimes my answer to that question is “I no longer have colitis”.

In my perfect world, I would be a healthy, colitis free individual. Unfortunately, my perfect world is just not an achievable place. Yet. I say yet because I know there will be a cure soon. There are many organizations (like the CCFC), medical teams, research projects (such as the GEM project) and even major units (think McMaster) trying their hardest to find a cure. For now though, I will have to wait for my perfect world.

So , with Crohn’s and Colitis month approaching, I’m asking everyone to remember all of us who can’t quite have our perfect world. Cross your fingers for us, spread the word, all with hopes that a cure will soon be found. And hopefully then all those suffering with an IBD may finally have their perfect world.

Cheers,
Lesley

Congress

We talk about it all a lot, we make jokes about it, we all have this in common. This past weekend 10 youth across Canada were chosen to go to congress – to represent the youth. This is my second year on the council and I was still nervous about meeting the first years. One thing I find amazing when I meet new people is when you find that one thing in common with them – everything is smooth sailing. Of course, finding that one aspect that was similar was simple – we are all women, in the same age group, who have either Crohn’s or colitis. Needless to say we got along all honkey dorey.

Four days is all we had – but even though it was short there was the sense of community, that at least one person has gone through the same experiences with these diseases. I know that when I was growing up with my disease – all I wanted was someone my own age to talk to, sometimes you just can’t ask your parents, doctor or your friends. They try to be supportive – but it’s not the same.

I suggest that if you would like to meet youth affected by IBD in your community contact your local CCFC chapter and start or join a youth council! The sense of partnership is truly amazing.

Danielle
Edmonton YAC Rep

The IBD Accent

Sometimes when you meet someone, you can tell exactly where they’re from. It might be their southern drawl, or a British accent, you can generally pin down their origins. But sometimes you can pin down more than where they’re from.

This past weekend, I had the amazing honor of spending time with fellow IBDers in both Toronto and in Texas. As always, I am stunned by how quickly bonds can be formed amongst a group affected by IBD. An introduction goes as follows: “Hi my name is Jennie, I’m from Nova Scotia, I’ve had Crohn’s for seven years, and I just had ostomy surgery for it this summer.” Within seconds of meeting someone, you have absorbed their most personal information and all of a sudden, you share a thousand private and life-changing moments in your mutual histories. And from then on, you can hear the IBD accent.

It’s an imaginary accent, of course, the way things like Prednisone and Remicade and surgeries are discussed, the way things like toilet paper and public accidents and cheesy bathroom jokes are laughed about. It’s the timed pause given after a ‘how-are-you’ that marks both concern and support, the careful listening displayed for another IBDer. The accent isn’t as vocal as it is physical.

Everyone has had a different experience, and everyone has a story to share. I never fail to find talking with an IBDer more exhilarating than blast-off into space - for some brief, precious time, I’m sitting face to face with someone who understands my scariest and most triumphant battles, someone who speaks the same language and shares the same accent.

Meeting youth affected by IBD has changed my life. It has given me the confidence and hope to dream of a future as bright and any youth can, to hold tightly to my dream and never let go. The successful lives showcased before me has always been, and continues to be, a remarkable demonstration of what one can accomplish through determination and belief in oneself.

To everyone that I have met living with IBD: thank you for your bravery, thank you for your persistence. You are a role model for me and I hope that I can one day return the favor to another young IBDer.

Thank you for speaking with your IBD accent.

Jennie

How 'Ya Doing?

How are you doing?

A question you’ve probably been asked more times than you can count - by doctors, teachers, parents, friends, coaches, and on and on and on. Do you say the same thing to each of them? Do you even tell them the truth?

This is a question I struggled with for a long time. Close to my diagnosis when I was beginning to finally understand what being an IBDer meant, if someone asked me how I was, I would launch into a massive spiel about Crohn’s and the treatment and just about every tiny detail. But that ended up frowns and looks of disgust on the faces of those who had asked, so I backed off and relented to the usual answers - ‘good’, ‘fine’, ‘thanks for asking.’

One day, I was asked by a friend’s mom how I was doing, but she then proceeded to interrupt herself and apologized, asking if I even wanted to be asked. I looked at her and said that if she was asking because she wanted to know the answer, then she could ask as much as she wanted, but if she was asking because she thought it was the polite thing to do, then I didn’t want to be asked.

In certain social circles growing up, everyone knew that I had IBD. People placed their own expectations on me - that I’d be unable to handle commitments, etc. - without ever first asking to see how I was and what was really going on. I had people that I baby-sat for hold their kids to them asking if I was contagious. I would smile tightly and answer what they didn’t ask - how I was.

When I came to college, my biggest to-do was to first be Jennie, and then Jennie with IBD, but first Jennie. It seemed like a simple enough task, but I was floored by how difficult it became - almost every memory in the past seven years relates to being sick in some regard. But I’ve done my very best, and think that I have succeeded.

My answers to ‘how are you doing’ have varied in the past - from simply ‘I’m doing’ to ‘Not so hot’, but nonetheless I try to answer honestly (and appropriately) for each person that asks me. I know now that in general the doctor wants the gritty details, the parents want the emotional part, the teachers want to know if you can sit in class, and so on.

I cringe at the simplistic phrase when I’m asked it, and try to decode that look of concern on the person’s face to see if it’s real or fake. But I will answer the question, because if I do my job properly, I can make even the polite askers good listeners.

So, how are you doing today? I’m listening.

Jennie

Food, Glorious Food

When I was younger, I was in a community production of Oliver, and while my stint in the spotlight didn’t last, I still find musical tunes catchy. And there’s been certain lyrics constantly on my mind: “...food, glorious food! We’re anxious to try it...”

I’ve been anxious to really eat for the past several months. The slightest reference to food can make me salivate more than Pavlov’s dogs. The majority of the summer, I existed on apple juice, which is neither terribly exciting nor palatable. And so when I was able to begin eating real food after my surgery, it was absolutely overwhelming. I had developed a highly specialized bucket list of food of things that I needed to eat. Some cravings were understandable, like the chocolate cake I had listed, some were results of successful product placement, like a Happy Meal (I have a cool Batman toy to prove it).

It was challenging to build up - from softer foods to more exotic things, like roughage. It was a slow process and the pacing was driving me crazy, it seemed to be the ultimate test in self-control. And little did I know a larger event was looming.

You can’t get off completely unscathed from a major abdominal surgery, and one night I found myself face first in my toilet upchucking any progress I might have made. I got myself to the ER with my newly blocked insides and proceeded to spend the next few days in the hospital. I academically understood the need to stop eating for the adhesions and be put on bowel rest and I complied easily with this. But by the second or third day when the nausea was gone and the hunger was back, I was less patient. First came the tray of clear fluids. I took one bite of Jell-O and put it back down. After months of eating clear fluids, I simply refused to do it anymore, I would throw up just from the thought of it. And so, again, I existed on pitchers of apple juice for a while.

But there was the promise of crackers hanging in the air. I had the nurses page the doctors, my hope and energy for the day depending on eating the crackers. After they told me I couldn’t have the crackers yet, I started to cry. I was so hungry and all I wanted was crackers, it was literally consuming all of my thoughts. Crackers, crackers, crackers - I wanted my freaking crackers.

A doctor came in a little later with exciting news - they were giving me crackers, semi-against orders, but nonetheless, I was getting crackers. I cannot communicate my sheer excitement when she brought in saltine and graham crackers. I ate so many crackers, failing at pacing myself, but happy as anything that I was once again eating.

The pacing is hard, and the temptation is harder. Food is unimaginable when you haven’t had it in so long. I’m still working on my food bucket list, and adding to it as well!

And all I can think when I eat is - food, glorious food!!

Jennie