Happy Anniversary to me! One year as a bagless wonder! To celebrate, below please find my speech, as delivered at the Ottawa Educational Symposium this afternoon. I apologize in advance for any egregious grammatical errors - I wrote it with breaks and pauses consistent with how I wanted to deliver it orally, and not with grammatical rules and syntax in mind. Apologies for the length - it was supposed to be 10-15 minutes long and I think I went a little long (surprise, surprise!).
Special shout out of thanks to Bauche, T and Dadoo for making the trip up and supporting me today. Your support during my dark ages makes days like today possible, and I can never truly express how thankful I am to have you in my life. I love you.
"Good afternoon everyone. My name is Ang, and I have Colitis. Probably. Like so many other people suffering from inflammatory bowel disease (known innocuously as the acronym IBD), they cannot be sure precisely what is going on inside my body. As a result, it’s hard for doctors to be sure whether I have Colitis or Crohn’s, or some absolutely awesome combination of both. However, the working assumption at this point is that it is, in fact, Colitis. This struggle for a definitive diagnosis has been perhaps the most persistent and difficult part of mine, my family and my friends’ journey with this disease.
My battle with diagnostic uncertainty has led me toward a renewed love/hate relationship with math; specifically numbers such as percentages, ratios and statistics. I was always terrible with anything to do with science and math – I still to this day break out in a cold sweat at the thought of calculus. However, since my diagnosis, I have become more proficient at all things number-related. For instance, I can tell you that you are more likely to die through an altercation with an angry Pomeranian than you are to die from a shark bite, and that you are safer being in the water with a shark then you are getting a soda out of a vending machine (not really, but you ARE more likely to be crushed by a vending machine than you are to get bit by a shark). Perhaps more to the point of my talk today – I have some numbers to share with you: 1 in 160. That is the likelihood of having IBD in Canada – in total that translates to over 210,000 Canadians waging battles with IBD every day. Rates of inflammatory bowel disease diagnosis in Canada outpace those in almost every other country in the world – and Canadians are more likely to be diagnosed with Crohn’s Disease or ulcerative colitis than they are Multiple Sclerosis or HIV.
On a more personal level, I can tell you some of my own numbers: since my original diagnosis in 2006, I have had 5 colonoscopies, 3 endoscopies, an endoscopic ultrasound, 4 CT scans, 5 ultrasounds, 5 MRIs, 3 PICC lines (which is a Peripherally Inserted Central Catheter, or in layman’s terms: an IV that is surgically implanted if you have difficult vein access), 3 ERCPS, countless blood tests, 3 surgeries, 43 staples, one bout with C Difficile, a cumulative 4 months in the hospital, six specialists, and approximately $1 million spent on parking at hospitals in Toronto.
I have struggled not to let myself be defined or defeated by these numbers, but I know that I remain in a perpetual battle that will never truly be concluded. At present, I take 27 pills every day and have five doctors on speed dial. I know the fastest routes to all hospitals on University Avenue and have finally figured out which hospitals give you hospital pants in addition to your oh-so-trendy gown and robe. I can also give anyone the inside edge on which hospitals actually have those wonderful warm blankets, and what you have to do in order to get one. My family and friends can also tell you definitively which hospitals have the best selections of food, value for money, and the very best in coffee specials on any given day.
All of this knowledge, however, did not come without a price. That price was my colon (and incidentally, my appendix, which I did not even know had been removed until I made a joke about it to my surgeon and she deadpanned back that I couldn’t give her my appendix as a present because she had already stolen it for herself). However, my struggle to become more than my numbers required that I force my doctors, specialists, nurses, etc to see beyond my statistical rates of infection, my infusion percentiles, current enzyme levels and ultimately to see me as more than a statistic. If you’ll permit me, let me take you back to the beginning and I’ll tell you a little bit about myself and what brings me here with all of my numbers.
I had been diagnosed with very mild ulcerative proctitis while I was doing my undergrad. It was controlled with ASA-5s and I was able to live my life fairly normally (with the added perk of having a built-in excuse to nap during the day. “It’s not my fault, guys, I have this thing called colitis.”) To be honest, I didn’t think much of until I moved back home to care for my mother who had been diagnosed with terminal cancer. It seemed as though I got sicker in direct correlation with her – by the time she passed away in December of 2007, I was going to the washroom approximately 15 times a day and was being slowly beaten down by a wicked bout of pancreatitis. My family (specifically my father, sister, and girlfriends that I consider family), staged an intervention and demanded that I go to the hospital and get checked out. I protested the entire drive there, insisting that they would probably just provide me some IV fluids and send me on my way.
I left that hospital four and a half weeks later, only to be transferred to Mt. Sinai hospital in Toronto to be placed under the care of a leading GI specialist there. I was given steroids that made my face ENORMOUS, fluids that did nothing but make me have to drag my butt out of bed to go to the bathroom MORE, pain killers that made me incoherent (but highly amusing to my visiting friends and family), and gave rise to my uncontrollable, undeniable love affair with Home and Garden Television and the Food Network. That’s right, I was on the lovely liquid nutrition known as TPN and hadn’t had solid food for approximately a month, but I could not stop watching other people preparing and consuming food. If someone wanted to change the channel, I took it as a personal affront and generally started to cry.
What I remember most about my time at the hospital is being quarantined with C Difficile and watching my sister fight with the charge nurse every time she was told that she had to be gowned and gloved before she could come in and see me. Her general retort was more or less the same shades of “SHE’S the sick one… why don’t you worry about HER?!” It was in those moments that I was forced to remember how hard it had been to be the healthy one and watching my mother slowly deteriorate in front of my eyes. And I could see that same helplessness, frustration and fear echoed in the faces of my family and friends, every time they came to the hospital to see me. I can personally attest that it is scary and depressing and so, so, so very lonely to be the sick one who remains at the hospital at the end of the day. But I had only to look at the regret on my family and friend’s faces, as they left me there for another day, unsatisfied with the answers that we were getting from the doctors and worried about what it meant that I was still getting sicker – to remind myself that I was NOT in my battle alone. I had only to look around the hospital to know that other patients did not have as tremendous a support system as I did. I knew that once “my people” went home at night they were researching words like “surgery”, “colitis”, “Remicade” and “C dif” on their computers, while re-organizing their schedules in the next days to find time to visit again.
The day that I tried Remicade for the first time, it had been couched in terms such as “if you don’t try this, you won’t be leaving the hospital any time soon (read: ever).” The experience went well and I remember thinking that all of the Remicade side effect stuff had been overblown – particularly the fact that a nurse had to stay in the room with me the entire time, waiting while it was infused. Pfft… an IV every couple of weeks? AND I get to keep my colon?! Done and done.
Well, Remicade had other plans for me, and wanted to write a different story – my third and final loading dose found me having a severe allergic reaction and being taken to the ER in an ambulance. That was the beginning of the end of my colon, which was removed in May of 2008. At that point, they had surmised that I actually had Crohn’s and not Colitis because of the presence of strictures that they had found on my scans. Humira was tried, but failed, and so I I was given an ostomy, told that it was permanent and I would have it for the rest of my life.
And let me tell you THAT was a huge adjustment – four months prior my mother was alive, I was relatively healthy, and everything was right in my world. Now I found myself in the hospital (again), colonless, without my mom, and facing an uncertain future with an ostomy bag that I didn’t understand. The adjustment wasn’t quick, nor was it painless – there were a couple of nights that I found myself in a state of exhaustion, trying to clean up after an appliance leak, sitting on the bathroom floor in a state of utter shock and disbelief that this was, in fact, my life. But, things (as they inevitably seem to do) got better, a little bit at a time – I was able to enjoy being outside again, being with my family, discovering the joys of a carb, carb, carb diet that required that I eat enriched white bread at every opportunity; I discovered the Tudors on BBC, found that there were Top Gear reruns on at 3am, and I furthered my love affair of the Food Network via a television show extravaganza known as “drive-ins, diners and dives.” Months later, I was able to start work on my Master’s degree and begin to feel like I had my feet under me again. My diagnosis had changed at this point (again!) from Crohn’s back to Colitis and I had the looming hope of an ostomy reversal in the future. BUT, like everything else it seemed that life had something else in mind: I was hospitalized again with pancreatitis and jaundice and after months of tests and procedures, diagnosed with an a-typical presentation of Primary Sclerosing Cholangitis, a liver disease that is rarely, but not uncommonly associated with ulcerative colitis. It is characterized by scarring of the bile ducts around the liver and involves the potential for a liver transplant sometime in the not-so-distant future. I have had three ERCPs to open up the scarred ducts so far, and am being monitored for future blockages through routine blood work and regular checkups with a team of liver specialists. As I mentioned before, I am currently on 27 pills a day to maintain the détente with my insides. I have since had my ostomy reversed and had a J-Pouch created and am learning that the Pouch is accompanied by an entirely new set of adjustments.
All of these events began to alter my perspective about my life, my family and friends, and what I was responsible for giving back. I began to realize that I had to stop being ashamed of having my disease and shying away from talking about them. I decided to stop burying my head in the sand and pretending that this was happening to someone else (and therefore someone else’s responsibility to cure). So… I called my people. And they came, like always. Last year was the inaugural year for Team CrapBag at the Gutsy Walk… our loud and exuberant team of about 30, walked, ran, rolled, and ate our way through a day that I found to be one of the most profound and special of my life. Yes, bad things had happened to me, and most assuredly, bad things were looming in the future, particularly with regard to my liver problems. But, for one moment in time, in that park in Toronto, I wasn’t sick and I wasn’t a victim; I wasn’t a patient, and I wasn’t all of those numbers that I mentioned at the beginning of my speech. I was with my family and friends and I could just be Ang – the loud-mouthed, outspoken daughter, sister, niece, cousin, second cousin, friend, and movie aficionado that I have always been.
The sense of empowerment and hope that I felt that day has helped steer me towards more association with the Crohn’s and Colitis Foundation of Canada. I now serve as the Vice President of the Ottawa-Gatineau Chapter and am the Silent Auction coordinator for our Martini Madness fundraiser. I have taken to blogging* about my experiences in the hopes that they might provide some comfort, or inspiration to others going through similar circumstances. In those forums, I have met a wonderful array of people from all walks of life who have been affected by these diseases in one form or another. We come from a variety of jobs, demographics, cultural backgrounds and interests, but we are united in our quest to FIND A CURE – for ourselves, for our loved ones, and for the future generations who are not yet struggling with these diseases.
I may have sacrificed my colon (and, of course, my poor, defenseless appendix), but I am still fighting to keep my liver. And I know my fight is not being waged alone : those on my personal team CrapBag and those who work with the CCFC everyday by volunteering their time and efforts. I invite you to take a look around at the stickers being worn by the individuals in this room and recognize that those colours represent someone who is fighting the same fight you are and looking for a cure whether as a patient, a parent, a sibling, a spouse, a friend or a child. My personal colours today are green for Colitis, red for both ostomy and Jpouch, and yellow because I know people who are struggling with these diseases alongside with me.
Everyone in this room may have a different story with a different set of dietary restrictions, medication protocols and supplement lists. But, we ARE united in our desire to find a cure, particularly as we note just how many of the newly diagnosed in Canada are children. So, I invite you to share your colours with pride, to talk about your battles and to connect with others who are facing similar challenges. Our combined strength, effort, enthusiasm and, in the case of my family and friends, our unapologetic ridiculousness, simply cannot fail. We will find a cure, we will improve the lives of those living with these diseases, and we will eventually prevent other people from waging these same battles in the future. In the meantime though, know that there are others like you out in the world here to talk, listen, rail at the world with you, and watch a lovely marathon on the Food Network if you’re just feeling too tired to move. My name is Ang and I have colitis. But, I am pleased to say that today at least, colitis doesn’t have me."
*All of that AND a shoutout to this blog?! Sometimes I impress even myself.
