Friday, July 30, 2010
Well, yes and no. Today is my 19th birthday, and where am I? In a hospital bed, a repeat of my 16th and 17th birthdays. I lost the specialness I attached to birthdays when I was a little girl a long time ago, that anticipation that everything is brighter and happier on your birthday, when you are the princess at the party and the world is yours. Because, why can you only feel that way on your birthday? Birthdays are just another day, we gain a year, but there aren’t more hours in the day or more rainbows in the sky. I try my best to make everyday the best and the happiest, so birthday or not, it’s time to make the best of things.
Like birthdays, hospital roomies come and go. Sometimes you get the good ones, sometimes you get the duds. But right now, I’ve got a pretty good one on the other side of the curtain, we’ll call her ‘Merry.’ Merry knows when I have to go, I have to go and asks if I need the bathroom before she goes. She is pleasant and tries to make the best of things. Merry is probably about 60 or so, and she informed me that the only thing golden about the golden years is the pee.
Things are not always great in life. Things are not always great battling IBD. I have had more accidents in the past 24 hours and ruined more underwear than I care to admit and I’ve had the lovely experience of using a commode. But everyday is a day closer to surgery, a day closer to recovery, a day closer to feeling better.
Why wait to enjoy the golden years when they’re happening right now?
Thursday, July 29, 2010
At 19 its hard to be told you have a chronic disease. Its even harder that at 19 you realize this disease takes away the control you had over your own body. After a year before being properly diagnosed, I thought I was just happy to have an answer. I thought that an answer would mean a treatment (if not a cure) and life would go back to normal.
After more discussion, you find out that Crohn’s Disease, in laymen’s terms just means “unpredictable, uncontrollable diarrhea” aka “gross and awkward embarrassing disease”.
I worked hard to hide it the best I could for a year. It wasn’t easy. Leaving group meetings at school to go home and shower for the times I didn’t quite make it to the bathroom was sometimes difficult to explain. Or leaving class 10 minutes after it started at sprint-speed seemed a little atypical to my peers.
The medication worked wonders. Oh boy did it work. Of course, it didn’t cure anything, and it wasn’t healing me but it took away the urgency and that was a life-saver. The urgency was gone but the pain, not so much. There were nights I couldn’t get to sleep, and when I did, I would wake up several times in the middle of the night in pain. But these were things that people could see, it was easier to hide.
But sometimes it wasn’t as easy to hide. Sometimes it hurt too much to walk straight or walk at a normal pace. Sometimes it took deep breathing and concentration to work through the pain. People would notice this, not understand, but notice it.
That’s when I realized it was time to make a change. As a university student, I knew all about stigmas and how they worked and if I didn’t do my part to educate people, to teach them, then I’d only be creating a larger cloud of silence.
It wasn’t easy. Of course it wasn’t easy. But each day at a time, each conversation it gets a bit better. Even writing this blog is a little nerve-racking at times. Putting myself out there, it can be scary.
The thing that helped me the most was getting involved. Doing things with my local CCFC chapter made it easier to talk about it. People understood, people got it, heck, people had their own stories! That is comforting. Once you talk with people who can relate it becomes a whole new world, suddenly the topic isn’t that odd or weird or even embarrassing if you can believe it. When you can become comfortable with it, others become comfortable with it.
If Dr Phil is right then we really “teach people how to treat us”. If we act like IBD is so taboo, people will read into that, they will treat it like its something to not talk about, to not deal with. But if we go into conversations with knowing what we want to say, how to say it, and that its not something to keep underwraps, they’ll understand to.
IBD, as life, is what you make it.
Yours in good health,
Friday, July 23, 2010
a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior
shameless ˈ sh āmlis
(of a person or their conduct) characterized by or showing a lack of shame
Shame: something that I felt time and time again when my GI would snap those plastic gloves on his hands and down went my pants for an examination. Which makes sense, I suppose, in hindsight, demanding a preteen to drop her pants for an adult male three times her age is embarrassing. I was humiliated to say the very least, I would close my eyes with my knees drawn into my chest and pretend I was somewhere far away from where I really was. What my GI failed to realize, and many doctors of mine after him, was that while for them IBD check-ups and procedures are routine and cold, it was all brand new and scary for me and that’s a very private part of your body to suddenly be on display for the medical world to poke and prod.
Then there was the peer shame. Not so much with my ‘normal’ peers as I felt it with my IBD peers. I can recall being on the elevator with my Mom in the hospital and a boy darting in just as the doors were closing. I looked up just as he looked at me, and I found myself staring at his NG tube. At this point I did not have one, and my cheeks were bright red as I watched his press the floor button that the GI clinic was on. I felt ashamed that I had escaped tube feeds when he had to be on them. I wanted to tell him that I too had Crohn’s, that I too was in pain and was suffering, but I couldn’t speak and wasn’t sure what to say. And that too, made me feel ashamed.
Years later, I found myself in a similar, if not worse, situation. It was the middle of the night and in my exhaustion and pain, I had wrangled myself from the hospital bed, torn the IV cables from the wall, and shoved the IV pole to the bathroom. But not fast enough. Down came the diarrhea as I began to cry and threw myself on the toilet. There was no chance I’d be able to clean myself up effectively by myself, no way I’d be able to get off the toilet without help. And so, I did what I could - I pulled that dreaded nurse emergency button. And there it was again - shame.
They came running, things were beeping, maybe in hindsight I’ve dramatized it, but they came as if the world was ending. The door flew up, their faces in fright, I held up in hands and tried to laugh. I told them I was fine, I just needed some help getting cleaned up. I felt badly for having worried them and making them run down the hall, felt badly they had to sponge bath a teenager to clean her of her own gross stool. And suddenly, while part of me remained shamed, part of me made it routine and ordinary, and it felt a little better.
I’d like to think I’m shameless now. In terms of GI things, I mean. I know what’s going on medically, I’ve had an enema done with an audience of nursing students and countless exams - and it’s okay, because it has to happen to somebody. I would rather be the guinea pig than have someone like my 12 year old self go through the shame blindly as I did. I know that I am not responsible for having my disease, but I am responsible for doing my best to get better.
As I prepare for surgery and think, disgustedly at times, who will see me at my most vulnerable time, lying on that OR table unconscious, it can make me cringe. But I know they’ll know what they’re doing just like I know what I’m doing. When it comes down to it, I’m just young and shameless - and proud of it.
Tuesday, July 20, 2010
Monday, July 19, 2010
So I graduated university this spring and without the blink of an eye, I was back in school...about a month later. Being a Masters student is completely opposite from life as an undergrad. I have no classes, no real professors, no timetables or hours of studying. I have none of that. For me everyday I come in and get to do my own work from my very own lab bench.
I'm really lucky, where I work is a huge group of researchers and clinicians (people like your GI) who are working hard to find answers and cures. Farncombe has gained international reputation as one of the top 10 gastrointestinal research groups in the world (http://farncombe.mcmaster.ca/) and this is the best part! By being apart of such a research group the people you meet is remarkable.
I started here just 8 weeks ago. Each week we take part in seminars, where we get international researchers and scientists to come down to McMaster. For a Crohn's patient, it was remarkable to see that all over the world, there are hundreds of thousands of high caliber researchers dedicated to finding a cure. IBD brings a lot of questions. Without a known cause, it's hard to know where to start. It's almost like finding an answer when you don't know the question. But there are a tonne of people dedicated to this, a tonne of people who care. A tonne of brillant minds working to find a cure.
It was this that I found to be the most influential part of my Masters programme so far. I love the science and the experiments and all that fun stuff, but the people, the people have made all the difference. Knowing that this much time, energy, money, thought, have gone into finding a cure, it gives me more hope than anything has so far. It's easy to get frustrated or upset with all the unknowns which stem from IBD but when you step back and take a look at all the efforts which are going in....it’s impossible to feel anything but hope. The answers, the cure, they're just around the corner. It’s just a global race to the finish line.
Yours in Good Health,
Friday, July 16, 2010
Like many IBD patients who are diagnosed in the pediatric realm, I have learned to casually operate with an NG tube in order to be fed. Simply, a tube is placed down your nose all the way to your stomach where you are given formula. An genius idea to be sure, being tube-fed doesn’t leave me feeling hungry, the GI tract still works, and the pressure to eat when food is sworn off is removed. The downside, you have a funny looking tube stuck to your face which disappears down your nose, for me 57 cm down. Obviously NG tubes aren’t trendy, it’s no metallic sandal or ripped jeans, a fashion statement it is not, but it is something that everyone can see virtually the entire length of your treatment.
I sway back and forth debating whether the fact the IBD is exteriorly invisible is a good or a bad thing. The bonus is that often times no one knows anything is wrong, but that can also be our worst enemy when people can’t see how severely ill we are. But the NG tube changes that - it’s a visual, an I’m-sick-and-this-tube-looks-awkward reminder that one of these things is not like the other. The first time I went to high school with mine, I was admittedly nervous, though I might be okay with it, how does a person manage to keep her chin up through a high school of over 1,500 students staring at a tube on her face? People asked if I had snorted an iPod shuffle, to which I would grin and explain what it is, or they’d ask in that tentative (aka WHAT is wrong with you???) tone, ‘So.... how are you doing?’ all the while staring at the tube. One day, an old friend from elementary school who I didn’t really speak to anymore came up to me at lunchtime, sat next to me, and as casually and curious as he could muster, asked what it was. Of course he was asking because it was bizarre, but he seemed to genuinely care and listened to my entire explanation and asked questions. He thanked me for telling him about it, told me he hoped I felt better soon, and that was that. In my opinion the best way to do things.
Which brings me back to a couple of days ago. Being able to consume as little as I currently can with my colon rebelling, my nutrition levels have dropped and I then campaigned for some tube feeds. When I mentioned to the nurses about being able to put in my own tube, they were shocked and informed me that ‘they did not do that at the hospital.’ Well, I begged to differ, and sure enough, they gave me the tube and let me do what I apparently do best, shoving a tube down my nose. Word spread through the floor about the novelty - a teenager who could put her own NG tube down, I was famous - well, at least for a hospital floor. My nurse came in at one point to start running the feeds, toting along her four nursing students. She asked if I had a syringe in my room to flush the tube, and I took it out of my bag, explaining I did it myself. Regurgitating the legend of my NG tube skill, she excitedly asked me to teach the students. I grinned, another shameless opportunity for my lecture. I was surprised at how intently the nursing students watched me, they were paying such close attention it made my brain hurt. I hope that I was able to show them that tube feeds, hospital stays, and bowel diseases can ultimately be a positive, humorous, and healthy experience with the right attitude and I hope they carry that lesson through their nursing careers.
Way back when I was 12 and contemplating having exclusive NG tube feeds, I was scared. I didn’t want the physical reminder on my face for my peers to blink at dumbfounded, and I certainly didn’t want to give any speeches about what IBD was. I remember sitting with my Dad in the cafeteria of the children’s hospital, my head on my hands in fear of my future. He announced that if I decided to do the tube feeds, he would wear an NG tube with me for three months. I looked up at him, baffled, here was a man who had the gag reflex of a peanut and he was volunteering to have a tube shoved down his throat? He had a job, he had clients, and yet he was willing to live with a tube on his face just so that I wouldn’t have to do it all alone.
I think of that when I think about my NG tube, sitting on my face daring people to ask me what is wrong. I think of the incredible lesson he taught me, of being a supportive friend, of being as empathetic as possible, of awareness and of hope. If I’m not willing to take a moment and educate someone about my disease, than I cannot be fully shocked when I don’t like the way I’m treated. Yes, everyone deserves to be treated with respect - but here’s the secret - sometimes they just don’t know what to say or do.
The only time I’ve ever seen Crohn’s on a medical drama was during the first season of Private Practice when the show managed to staple together every stereotype about IBD - that it was a mental illness, girls must have eating disorders, and that it’s easily diagnosed and treated. In the episode, after running some bloodwork and finding an elevated ESR (which, of course, any IBDer knows is a marker for inflammation in the body), they diagnosed the patient with Crohn’s and the show ends with them prescribing her Prednisone and basically saying Ciao, have a nice life. I’m glad IBD is so cut and dry - my bowels didn’t seem to get the message. When people say that no one wants to hear about bowels and poop, gag me, not only is it a fact of life that everyone goes to the bathroom, but it is a fact that countless people are suffering from an unfashionable disease. And we deserve change.
But change does not come from wishing or being frustrated at how we’re perceived. As a contingent of youth, we cannot complain that people don’t hear our voices if we’re not willing to speak.
So speak your mind, and people just might listen.
Saturday, July 10, 2010
In my most zen-like explanation of my experience in the bathroom, I explained to a friend the other day that the toilet and I are one. Thus, one might imagine the need for a hospital to invest in some decent toilet paper you can’t see through. But the world is far from perfect.
Having Crohn’s hasn’t kept me from a lot in my life, but this summer I had to forgo being a camp counselor for surgery. But no worries, I am still soaking up the experience - from my hospital general surgery ward where I’m sharing a non-air conditioned room with some roomies, we’ll call them Mildred and Army-Guy. And while the company is far from amusing, at least I’m not alone. This marks my first venture into the adult hospital universe, far away from the brightly painted Children’s Hospital walls and cartoon stickers. In an effort to preserve my fading childhood, I have my ever faithful Build-A-Bear, Oppenheimer. Don’t laugh, though he has a rather odd name, it does make sense. Crohn’s Disease is only called that because on the report that described the disease (written by Crohn’s, Ginzburg, and Oppenheimer), Burrill Crohn’s name was alphabetically first. So the consolation prize for Oppenheimer is that a Build-A-Bear is named after him, a great second place honor if you ask me.
Sometimes I think life could not get more ironic. Like when Mildred is being sent for her PICC line, one I will soon acquire, or that I’m on the 9th floor which is (or used to be) my lucky number, or that the nurse cannot spell my disease, or that her name is pronounced like my favorite brand of toilet paper - yes, I’m not kidding, Charmin the nurse. Yes, life’s irony can make you laugh or cry, it’s learning to laugh through the tears that’s important.
If life has taught me nothing else, it’s that you have to simplify your life for your sanity and health, and that when it comes to toilet paper, the more ply the better.
Tuesday, July 6, 2010
I would spend my days in class, my evenings with friends and my nights working for the Residence Life office at McMaster University. Everyday was as fun and busy as the last, and that’s exactly how I liked it. That was until everything changed. It was at the beginning of my second year at university that I first began to show symptoms. The pain would shoot through my abdomen, so intense it would keep me up at night, and force me to stay in bed during the day. Sometimes it was too much to even stand upright.
I saw three different doctors who told me three different stories. I was told I had to just eat healthier, more probiotics. Then I was told it was stress from university due to dates and deadlines; it was “normal.” Then finally I was sent to a gastroenterologist.
Being away at university, I went alone to get colonoscopies and barium tests. It was just days before my 20th birthday that I was diagnosed with Crohn’s disease. For me, the diagnosis was great. I had never heard of Crohn’s disease before, but it didn’t matter. I had answers and soon I would have a cure. Of course, soon after I discovered, this wasn’t the case…at all.
I soon found out that all a diagnosis of Crohn’s disease meant was that it was chronic and incurable. If news like that doesn’t knock you down, I don’t know what can. Continuous blood tests, specialist visits, and drug cocktails that were continuously changed until they worked sure took its toll. It was hard enough to make it to a class, let alone study. Crohn’s Disease took my old life.
If that doesn’t sound bad enough, Crohn’s disease, for a woman who was almost 20, is filled with stigma. It isn’t glamorous to speak about a disease under the umbrella of Infammatory Bowel Disease (IBD).
And with this, I had a choice. I could let this disease overturn me. Speak nothing of it, be in isolation and cross my fingers that the next medical cocktail would work better than the last, or I could embark on a journey for change.
Upon yet another visit to the specialist, I saw a pamphlet for the Crohn’s and Colitis Foundation of Canada (CCFC).
I joined. I got the Welcome Kit and in a strange way, I felt better almost immediately. People were talking about it, I wasn’t alone and people were working toward answers. This made me feel empowered.
From the CCFC I saw an application to join the Youth Advisory Council (YAC). On the YAC, I joined 13 other youth from across Canada to be the voice of Youth living with IBD. Helping to work in conjunction with local CCFC chapters, I felt I could make a difference.
For me, perhaps Crohn’s came just at the right time. Seeing what I could do from a social standpoint with the foundation and the youth advisory council sparked the idea that there was more I can do.
With my biochemistry background, I applied to a masters of science program in medical sciences. As a masters student at the Wallace lab at the Farncombe Family Digestive Health Research Institute at McMaster University, I am at the cusp of innovation and discovery for IBD.
Crohn’s disease, like any chronic inflammatory disease, is painful. It’s sporadic and sometimes debilitating. But the more I’ve become involved, the more I can see beyond IBD.
There are resources and support, and eventually there will be answers. I am not only a Crohn’s Disease patient, I am a young individual committed to being a part of the cure.
YAC Representative for Hamilton
Monday, July 5, 2010
No, not with a boyfriend or even a job. Mine is with a disease.
And it’s even getting me a present, believe it or not. Yes, this, the seventh summer of having Crohn’s will mark my first IBD surgery and the removal of my colon. Finally.
Let me rewind and go back a little. Seven years ago, I was fresh out of elementary school, psyched for junior high and student councils and was also beginning to experience sudden and unbearable cramps. My pediatrician thought I was getting my period, I was growing up after all, but I insisted the blood was coming out the other end. I went to the first day of junior high with electric-colored blue band-aids lining the inside of my elbows, the evidence of a white-blood cell scan, and a belly full of butterflies in every sense of the expression. I met with a GI that month and he mentioned Crohn’s Disease casually, but when my parents and I asked more about it, he said, “We’ll get there if we have to.” As soon as he started talking about the colonoscopy I started freaking out - I had an eye surgery in the 5th grade and had a bad experience with surgery, so naturally the thought of it all again creeped me out.
September 23rd, 2003 came and I found myself in the OR surrounded by the doctors. They asked me to tell a joke, I was told them the following: why didn’t the skeleton go to the prom? Because he had no body to go with. Lame, yes. As they pushed the medication that made me go off to sleep, I thought about all the other jokes that were a thousand times better. And that was my life pre-Crohn’s.
I woke up to my parents, crying. They told me I had Crohn’s and I blinked at them - so what? Little did I know how much my life would change. For a few months after my diagnosis, I sank into denial like someone being sucked into a black hole. I would sit by the phone for hours, waiting for the GI to call to say I had been misdiagnosed, I wouldn’t take my pills unless my parents physically made me, I would lie on the floor in the front hall and cry because I didn’t know what was wrong with me. I was, in a word, pathetic. Pathetic and lonely and confused and afraid - and chronically ill.
Over the years, something changed, something deep within me and all of a sudden I was able to talk about my Crohn’s Disease with passion, with excitement almost, I wanted to talk about it and make a difference in the world. That’s a tall order for a young girl, but through the CCFC and the YAC, I have been able to do this for the past several years and will keep working until a cure is found.
When I think about my life, I think about all the things I’ve done, the friends I’ve made - the usual. But when I really focus on the past seven years, I remember how I have been constantly severely sick, only a token two or three month remission sprinkled sparingly in between. I have ‘failed’ every drug and have exhausted my medical options, surgery is the only choice left on the table.
It’s hard to say good-bye to a part of yourself, to decide to cut out a organ, to want to do it. But I do. I want to part ways with my colon, keep in mind we haven’t been so compatible, it’ll be for the best. So my anniversary will become a break-up, but I can honestly say the decision was mine.
Colon, it’s not me, it’s you.
YAC Chair, Halifax Representative
The Crohn’s and Colitis Foundation of Canada (CCFC) is the number one non-governmental funder of IBD research per capita internationally. That may be in part due to the fact that globally Canadians have the highest incidence rate of IBD (over 200 000 Canadians have one of the two diseases and it costs the Canadian government close to $2 billion annually). The CCFC’s main goal is to raise money for research so that a cause and cure are found, and there is a lot of research going on that will make that happen! However, aside from the large amount of research, the CCFC really wanted to get more youth involved, and so, the YAC was created.
I am one of 14 members of the YAC. We are a group of cross-Canadian youth between the ages of 15-24 whose lives have been affected by Inflammatory Bowel Disease (IBD). Personally, I have ulcerative colitis. However, some of us have Crohn’s, and some of us have siblings or parents with an IBD. Whatever the reason, IBDs have had an impact on our lives so we are here to do something about it. (I mean, one of the most affected age for people being diagnosed is 15-24 , sooooo shouldn’t we be the ones getting involved and making a difference?) For the past 9 months our group has been working in different taskforces trying to find a way to reach as many youth as possible. We want you to get involved in each and every way possible. Whether you want to fundraise more, or you are newly diagnosed and want to meet some people who are going through the same thing you are, we have got something for you. And, we’re looking for more people to join our fantastic team. We’re accepting applications for the YAC until July 15th. Go to our website for more information http://www.thegutsygeneration.ca/EN/connect/yac.html
And if you have any questions about the YAC, contact any of us and we’ll get back to you asap! Meanwhile, stay tuned for our updates. They’ll be about research,events, funny life stories (we have many) and much much more. And if you have something to contribute, just let us know.
Cheers, and have a fantastic day.