The IV Pole Metaphor

Ah, that IV pole, always one shove ahead of us.

Just like people, IV poles come in a multitude of varieties - purely tall, adjustable, big wheels, tiny wheels, squeaky wheels, baskets attached, pumps hanging on, even the number of hooks at the top. It’s kind of like the medical version of hand-cuffs, we are literally plugged into the wall and attached to something, a two-for-one deal.

In the middle of the night it can be the enemy, a desperate act to unplug and get to the bathroom. During the day it can be the bother that you trip on during your walk. But no matter what time of the day, it can serve as a constant reminder of being sick with IBD.

I think the IV pole experience is a good metaphor for having IBD. At the beginning, you typically either try to run away from it unsuccessfully or try to cling to the pole, unsure of what else is happening. The poles are a little too big and wobbly at first, at the beginning we can only steer them with two hands and immense concentration. But soon enough, we find we’re pushing it along with one hand.

Then they are the pumps. Things can be streamlined, one pump, or crazy, four or more pumps, barely fitting on the pole and beeping and unable to be calmed. We need help sometimes, when we buzz the nurses in frustration and panic at the pump beeping, but very quickly we learn where the ‘silence’ button is - a massive saving grace in the middle of the night.

Just like any other skill, mastering the IV pole takes time and is an ongoing challenge. If we learn from the IV pole, to be the squeaky wheel and get our questions answers, to be heard as youth, to stand tall, to ask for help when we need it, and to try to walk side-by-side with everyone in our life - then we too can be supportive, adaptive, strong, and unbreakable.

Jennie

Do You Believe in Magic?

When I was about ten, I came across a picture book that made me believe in magic. On the back cover it showed a girl and a boy sitting in a closet with the book open and fireworks flying out. I was so excited and I quickly ran to my parents’ walk-in closet and plopped myself on the floor. I peeled back the cover of the book, anticipating fireworks and magic, and to my horror, nothing happened. I flipped through the book, desperate for the magic, but there were no fireworks. And my brief stint in believing in magic was over.

Now that I’m 19, I only have retained a smidgen of belief in magic, and it probably doesn’t even count. And that’s because the only magic I believe in is a magic-bag. It is always a necessary accessory to survive a flare for me. My family has been trained to heat it up for two minutes in the microwave and deliver it back to me in a timely manner. It is my tell-tale sign of active disease.

In the sake of continuous comfort from the heat, I have invested in several magic-bags. Two are long so that I can sling it over me when I’m lying on my side, and one is a big square for sleeping on my back. But beyond the different uses of their sizes, it’s essential to have multiple so that one can be heated while one is on you, hence a non-stop flow of perfect temperature magic-bags.

But on the go, the solution is not as easy. The heat wears out quickly and then you’re lugging an unattractive bag of beans. Fear not, there is a cure! Any of those heat wraps you can buy at the pharmacy to slip under your clothes for back pain - turn them around and voila, heat on your tummy!

Yes, magic-bags have been a savior of mine for the past seven years. Crohn’s can easily disenchant people with it’s unending mission to destroy our bowels; but for me the simple things - like enjoying a warm magic-bag - can make the minute to minute battle more manageable and much easier to deal with.

Whether or not you believe in magic, remember to believe in yourself.

Jennie

These Are The Golden Years

A year into my diagnosis, I was on the fragile ground between understanding what it meant to have Crohn’s and understanding why I had Crohn’s. I was developmentally growing out of being a child and though I knew logically that sometimes things happened for no reason, I still grappled with it emotionally. I tried to do what anyone does in a confusing situation - I tried to make sense of it all according to the way I saw the world. I look back at my bruised epiphany with pity almost, it was truly before hospitalizations and IVs and serious IBD issues, but I decided at 13 that I had been dealt my troubles young and that things would be so much better soon.

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?

Jennie

Getting Involved

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,

Steph

The Young and The Shameless

shame sh ām
noun
a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior

shameless ˈ sh āmlis
adjective
(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.

Jennie

That Dreaded Question

I’m sitting here thinking that there is one question that makes me uneasy more than any other. It’s the dreaded “What is an IBD” line. Now, don’t’ get me wrong. I love educating people. I enjoy sharing my unspecialized knowledge with anyone that is interested. However, sometimes I really don’t’ know how to have that extremely awkward conversation. For example, imagine you start a new job and, completely out of your control, you have a 4 hour remicade appointment during your first week. You have to go to your manager and find a way to tell them so that they aren’t annoyed with you taking time off so soon, and also understand that this is a reoccurring event. Of course you start with the “I have an IBD “line and in return you may just get a blank stare. Crap. Now you have to explain this too? Of course, not all employers will want to get into the nitty gritty details of the workings of your bowels, but some genuinely care about their employees and will want to know what exactly causes you to be sick. And if they don’t’ know what Crohn’s or colitis are, you’re going to have to educate them. Double crap. Soo, do you start with the facts, “Well, I have to make frequent and urgent trips to the washroom” or do you tame it down and just say “I have stomach issues”? And what if your employer is computer savvy and just Wikipedias it, is that better or worse? How do you have the “I have an IBD” convo when you start a new relationship? No really, how on earth do you breach that subject with your new amour? Do you wait until you are in the battles of a flare up, do you mention it when you are popping all those pills you take, or do you casually drop the facts about crazy mood swings and moon face right before you start your high dose of prednisone? Sigh. I feel this is a never ending cycle. I started with one questions and now I have 10, and I still have to answer that stomach crunching question. What is an IBD? Well, you see… um… my colon is inflamed?

/Lesley

IBD Around the World in 56 Days

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,

Steph :)

Gag Me

Perhaps because of my immersion in the medical world, I have learned to love and admire all things medical. Or perhaps I just like to know how things work. Regardless, I find the hospital oddly comforting, there’s safety and relief in hospital protocol and IVs and medications, almost as if pain indicates rescue, therefore being in the hospital means you will feel better... eventually, at least. Nonetheless, I take every opportunity I have to give my IBD and youth patient speech to any available ear, I feel it’s particularly important in hospitals where a kind word or a smile can go a long way.

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.

Jennie

Sim-ply-fy My Life

Two ply or not two ply, that apparently is the question. Even Shakespeare would agree that half-ply should be illegal, I’m sure there’s a hidden, unread play entitled: “Charmin: the ways things should be” - it would be a comedy, of course.

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.

Jennie

Become Involved and See Beyond Disease

As a biochemistry student, a varsity athlete, a lifeguard and even an entrepreneur through Ontario’s Summer Company Program, my life was pretty hectic at age 18.

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.

Steph Syer
YAC Representative for Hamilton