But, for today at least, my colitis does not have me...

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.  

It takes guts...

Greetings from the world of CrapBag! 


The good news from my end is that I have been so busy actually LIVING that I have not had time to update my blog. Things have been really crazy, but very exciting and positive, over the last few months and I want so share some of it with you. 


First of all, a shout out to my thith - who was awarded the Golden Gutsy award for all of her work for the Crohn's and Colitis Foundation of Canada. I don't know of anyone who deserves it more - she has been tireless in her fundraising efforts for Team CrapBag and she has been my most vocal supporter and advocate. I guess the "brass" at the CCFC figured out how great of an asset she is (can/will be), and they have tapped her to be the new chair of the Family Committee of the Gutsy Walk. Which reminds me - they have changed the name of the Heel'n'Wheel-a-Thon to the Gutsy Walk. That's right: as of next year, we in  Team CrapBag will be bringing out impressive thunder to the Gutsy Walk for Crohn's and Colitis. The new tagline (which I think is fantastic), is "it takes guts to find a cure." (I am sure there is a joke to be made here about my lack of guts, but I can only think of jokes that are super obvious and not really worthy of you, my dear readers.) So, in keeping with this new fundraising re-vamp, my sister will be chairing a new committee that is aimed at promoting more family participation. I guess Team CrapBag made an impression (not yet sure what kind of impression yet) and they want to try and encourage more people to come out with their support teams to help fundraise for a cure. As I said, terribly exciting!  


I also helped coordinate a fundraising event known as "Martini Madness" here in O-town, which is a fabulous night of martini sampling*, hors d'oeuvres**, a silent auction and an art exhibition. We raised over $22,000 for the CCFC, had a fantastic time with family and friends, drank a bit (read: a lot), ate a lot (read: everything in sight), AND I had an excuse to dress up and actually get my hair "did", which was nice. Also nice, of course, was having hair to actually get "did" - it is back to pre-sick length, which is a source of endless happiness for me. It may have come back with curl and without as much thickness, but it is BACK, my friends: back, back, back! 


I have also been asked to participate in an educational event here in Ottawa in January. It will be a patient panel, moderated by a local GI doctor who is amazing (both in skill set and patient-care), discussing the role of Biologics and IBD.  As many of you know, I did not have an overly awesome experience with Remicade and Humira but that I am a strong advocate for individuals making the right (informed) choices for themselves. As a result, I will be on hand to speak to my experiences alongside two friends of mine: Sherry will speak about her experience with Humira (she has Crohn's), and Matty will talk about his journey with Remicade in the treatment of his UC.  Luckily for everyone, we'll also have Dr. Oliveira on hand to answer any strictly "medical" questions that are outside our areas of expertise (somehow I think degrees in political "science" provide me the same level of knowledge as someone who spent three and a half jabillion year in medical school). 


Tomorrow is also a really exciting day in the life of CrapBag: it will be my one year anniversary of living bag-free! HEYYYYYYYY-O. Incidentally, this is also my one-year anniversary of not being admitted to the hospital, AND of not being cut open by a scalpel. Good times. To celebrate, I will be speaking at the Ottawa educational symposium about how IBD has affected my life, and how involvement in the CCFC has helped me cope with my medical realities. I'll post my speech once I have written it (why DO I persist in writing these things at the very last minute?!?!) and let you know if I was pelted with olives or not. Stay tuned... 


* My friends interpreted this as "all you can drink'orama for charity!" I think we should consider making that our event name next year. 
** Max's mom interpreted this as the "post dinner, pre-after dinner snack" portion of the evening. The good news is that I have it on good authority that she tried everything at least once (twice), and it was all apparently delicious, even the cocktail napkin she chewed on while she awaited the arrival of the chocolate-covered strawberries. Thanks for your dedication and service, poisson!  

Veni, Vidi, Vici*

Dear Readers, 

What I have long suspected has now been confirmed: my friends and family are the absolute greatest. The reality of having serious health problems is that you sometimes find your back against the wall. Surgeries, transfusions, infections, quarantine, jaundice and scopes and... you get the idea. (read: Ang meet wall.) Well, I came to a startling realization on Sunday morning as I watched my family and friends turn up in the wee hours with picnic deliciousness, Team CrapBag tshirts and all sorts of energy and enthusiasm: I’ve never been against the wall. Because they have stood between me and the very worst experiences of my life, and held me up until I was steady enough to stand on my own. My back wasn’t against the wall; it was against them.  

This amazing realization set the tone for the entire day: Team CrapBag came, saw and conquered. Big time. We all participated in the walk, except for Sir Hop who bravely stayed behind to guard our picnic and belongings (there was also the small matter of him having fallen out of a boat and bruised ribs…but that’s an entirely different story that, I’m sure, is worthy of its very own blog.) After completing the actual walk, we pretty much challenged all of the other teams to a battle for physical supremacy and dared them to take us on. Happily, they let it go so we were able to maintain (some) of our dignity. We also won “Wackiest Team/Best T-shirt” (with a HUGE shout out going out to Ali and the fine moves of Zumba. Merci encore… you saved us!) Following that, we dug into an epic picnic that saw us stuffing our faces for a good hour and a half… mmm, food out of a basket.

Some of the nicest parts of the day occurred when other IBD sufferers (and their support teams) approached us and reached out. The main thread of those conversations was that people were impressed by our enthusiasm and our “unity” (it was obvious that we were all in it together). My sister was asked to become further involved in CCFC fundraising and Committee work, while I was somehow asked to be the Honorary Chair for next year. I am not sure precisely what this entails, but I am assured it will probably involve placing my sad, somewhat large face on promotional materials for the CCFC/ Heel ‘n Wheel next year. I’ll have to try and figure out a way to compete with the boys who chaired this year: they were inherently cute because they were 8 and 10. I feel I no longer have the youth/cute vote just because, so I am fielding suggestions on how to win over the crowds. I have had this recurring nightmare all week that I will be on stage next year and people will boo me and throw rotting fruit. Perhaps one solution to this is to lay off watching the Tudors…

Anyway, suffice it to say: I am monumentally pumped. To see so many of “my” people coming out in support, keeping energy levels up, making sure everyone was having a good time and that the kids were enjoying themselves. I can truly say that Sunday was a day that I will never, ever forget. Thank you, thank you, thank you to everyone who came out and supported us along the way. Your generosity will never be forgotten. And remember, mark your calendars for next year.Team CrapBag is going to be back and better than ever!   

* In the immortal words of Julius Caesar “I came, I saw, I conquered.” (Or Jay Z as featured in this song.)   

I have been…

Please note that this entry has been modified from the actual remarks I delivered at the Heel ‘n’ Wheel today. The names have been replaced by nicknames or initials to protect anonymity and privacy. I hope that, in reading this, you know who you are and how very much you mean to me…

I have been poked, I have been prodded, and I have been victim to the euphemisms of “pressure”, “pinch”, and “discomfort”.

I have been diagnosed, I have been labeled “patient”, and I have been contagious.

I have been cut and I have been sewn back together.

I have been infected, I have been disinfected, and I have been heartbroken.

I have been obstructed, I have been transfused, and I have been experimented upon.

I have been tired, I have been sore, and I have been unwilling to move.

I have been warmed, I have been cooled, and I have been washed and dried.

I have been ignored, I have been undermined, and I have been in tears.

I have been championed, I have been acknowledged and I have been comforted.

I have been sick, I have been in pain, and I have been sad. 

I have been frightened, I have been lonely, and I have been lost. 

But…

I have laughter, I have joy and I have family.

I have oatmeal cookies, I have sour keys and I have oxycontin.

I have Thith and Dad, Auntie A and Maytag. I have T&M, P&L. I have Uncle V, and the three K’s. I have N, T, N; I have H, M and E (and Sarah).  I have the Polack and the Gaspesian. I have J&J and Miss M; I have L&D. I have Chris squared and I have Garbage Name. I have J & W, J and Butchy; I have A, D, N, G, K and their families. I have the Timmins contingent; and my wonderful family from la belle province. I have Ms. Helen, Bauche and Goods; I have AEG (now R) and KR. I have my supporters from the Sault, Huntsville and Sudbury. I have all those who simply refer to me as “xxxx’s-sister.” I have J&P, S&D (&A), and J&D. I have Yeovil town and their offspring (and their offspring’s offspring). I have Ferns, Millertime and Chair-el.

I find strength in “Bear” and other survivors. I find sanctuary and understanding with Auntie A, and comfort in the lilac bushes in our backyard. I find solace in the poetry of my favourite music. I have memories; and in them I still have mom. 

And in all of this: I have hope. Thank you for giving me that. I love you and will never forget all that you have done to get me here today. I have hope, and I have tomorrow because I have you. And I hope you know that with all that I am, you have me, too.

(Thank you for such a great day! Pictures and stories to follow later this week…)

Team CrapBag Kicks Colitis Ass!

Just a quick post, dear readers, to say: CONGRATULATIONS to the entire CrapBag team. Our efforts to raise money for the annual Heel 'n' Wheel Crohn's and Colitis fundraiser have paid off. We hit our goal of $5000. That's right, mes amis, five.thousand.dollars!* All of this was made possible through the hard work of so many, but I wanted to do a special shout out to a few very special individuals who have been working diligently over the last few months. Thith: THANK YOU. Without your encouragement and team leadership, we never would have gotten to our goal. Also, your friends and clients with the deep-pockets helped considerably :) Keg (& MS): thank you so much for all of your work with our Team CrapBag t-shirts. They are going to be so great and they will go a long way in identifying all of our giant family as one big purple blob on Sunday. Wackiest Team award - here we come. Thanks also goes to my wonderful Aunt A - without whom we could not do any of this. She is always willing to pitch in and help out, especially in preparation for this weekend's festivities. I hope she knows that she is always appreciated and adored. And lastly, to the other fundraisers in Team CrapBag: my sistah's from other mistah's (and motha's) Sezzie, Tiffy and Annie -- you girls rock my face off. 15-20 years ago, I bet you never thought we'd be here. I sure as hell didn't. I thought I would have dumped the lot of you by now.** Apparently you stuck. So, thanks for that, among everything else. 


Thank you, of course, also goes to everyone who donated. Every dollar raised got us one step closer to our goal, and hopefully, one step closer to a cure. Thank you for your continued support. Also, think of the pay off if you're actually the person who wins the TV. Can you say win-win?

More to come, so watch this space. In the meantime, I just wanted to call attention to our team's fantastic fundraising efforts. (Again, that was a five and three zeros).  Every dollar and cent raised goes directly toward funding research and programming through the Crohn's and Colitis Foundation of Canada. Thank you, thank you, thank you on behalf of the hundreds of thousands suffering from these shitty (ha ha) diseases. 

*Said in the same tone as Julia Roberts in Pretty Woman: "threeeeee thoussssand dollars." *stomps foot on the floor of the bathtub for emphasis.* 

** Just kidding! Please don't leave me...but, even if you try, I'll find you. That's a promise. 

“Not To Mention Your *thud, thud, thud*, Biological Clock!”*

Worst.blogger.ever. Okay, probably not. But, sometimes I worry that my posts are as entertaining as “Bob in the Basement”** who writes things like “I’m Bob. I like sitting in my basement and looking at stamps. I had spaghetti for dinner. It came from a can.” Good times. But, I remind myself that I usually have something marginally interesting to say about stuff that other people may find useful. (It’s almost like I’m a saint. Watch out, Mother Teresa, I’m comin’ for you…”) And then life happens, as life inevitably does (and should!) and all of a sudden it’s been months since I posted anything. One thing to note about me: I have terrible follow-through. Just ask my roller blades, still in the package from my 12^th birthday. Or the time I decided I really wanted to learn how to bake…I still don’t know how to make those delicious boxed cupcakes with the rainbow bits in them (and I’m fairly certain all you have to do is add water and some kind of heat source). However, I digress…welcome back to the world of CrapBag, dear readers. Some things have changed for the better, some things for the worse and some things I have yet to decide on…

So, the big news (besides the other big news), is that I am back at work. Nothing permanent for right now, but it’s kind of perfect because it’s letting me ease back into a routine. I am not gonna lie: the first week was sort of like being a hamster: spinning, spinning, spinning in that habitrail just to end up in the same place. But, it was almost kind of nice because it was difficult and tiring and just a little tedious– it has been so long since I was legitimately tired and not just tired because my liver, pancreas and gallbladder were angry with me. And the routine is nice, along with being out in the world and actually seeing people. And not just any people – but people who don’t know me as “sick girl”, which is really gratifying. With the hair grown back (mostly), and my weight stabilized I look sort of like a girlish version of Peter Pan (not the Hook version because even at my worst I did not look like Robin Williams). A healthy Peter Pan. But, God sometimes I just want to yell: “go get it yourself, you lazy bastards! Do you have any idea what I’ve been through?!” And then, I think: “no, no they don’t.” So I take a deep breath and then go do it myself. And there’s a freedom in that which I doubt I will ever take for granted again.

So, CrapBag is back at work (for the moment) and working on my Master’s paper even though I doubt I will ever actually be able to put MA beside my name. It continues to feel like a perma- albatross around my neck that I will never, ever be rid of. I find myself in the midst of yet another academic petition, trying to get York to stop charging me tuition for time I was too sick to attend seminar.***And I am living on my own for the first time in almost four years, which is lovely. But, not all in life is wonder and roses… every time I manage to convince myself that I am healthy and all of this PSC nonsense is all a mistake, I meet up with Sir Gideon at Toronto Western and am reminded all over again about the joys of living with chronic illness. Sort of like the city of San Francisco: all you can do is go about your life and business, but you know sooner or later the earth is going to fracture beneath your feet.

I had an appointment about a week ago for an ultrasound to check on the progress of my sinister and suspicious strictures and my general health. I get down there and report a little bit early to ultrasound – where the lady informs me that my appointment was changed. And I said: “to later in the day?” And she says, “no, to three weeks from now.” And I, stupidly, replied: “But I’m here now.”… And she just looked at me like I was an idiot and called “Next!” Suffice it to say: I was pissed. No one had called me about re-scheduling anything. And I felt with six months between check-ins, that there was sufficient warning time for someone to pick up the damn telephone. However, I used the power of my bitch-on and yelled, cajoled and guilted my way into them “sneaking” me in for an ultrasound without an appointment and fitting me in with my doctor (the great and powerful Gideon!). I have never really been able to talk myself into anything/anywhere, so here is the magic combo of what seemed to work:

1.  Exaggerate. I lied and said I had driven in from Ottawa the night before specifically for the appointment. However, I would have had to do so to come back for the re-scheduled appointment so it wasn’t beyond the realm of possibility. Also, I didn’t feel bad at all about it, so I suppose that’s something. (Or says something about how defunct my moral compass is. Whichever works.)
2.  Look pathetic. This was not that difficult to do because I was literally shivering and freezing in front of their eyes. I think my general air of pathetic-ness sped things along nicely.
3.  Try to be charming. It was the male ultrasound tech who volunteered to move his lunch around to do my ad hoc ultrasound. And then he talked to me the entire time about how cool my scars are before chatting my ear off about Buffy the Vampire Slayer.
4.  Develop a good relationship with your doctor – he knew my name enough to consent to squeezing me in when he certainly didn’t have to.

So, I got my ultrasound and got in to see Dr. Hirschfield before my scheduled appointment time was even upon us, so all in all I think it worked out pretty well. We first talked about how exceptional my case was (not in a good way, like “you’re exceptional” but rather like “we don’t know quite what to make of you or your disease). I suppose it’s something that I’m not boring! Most PSC cases involve scarring in the hundreds of little ducts inside the liver. Because these ducts are so small and fryable (fragile and prone to bleeding because of their proximity to the liver), there is no ERCP or stenting to be done to keep them open. The little ones just kind of gradually shut down and there’s nothing to be done. Not so with Captain CrapBag! My disease manifests itself outside of the liver in the one duct that is there. You may have heard of it: the common bile duct. It’s kind of a big deal. Anyway, so the good news is that as the Cholangitis causes scarring, I have been able to treat it with stents to keep the scars open until they literally scar partially open and are able to keep the bile flowing. The bad news, then, is that once the common bile duct shuts down, that’s pretty much all she wrote in the story of “Ang’s original liver.” Once that becomes cirrhotic, that’s pretty much transplant time. But, hopefully we can put that off by stenting and ERCPs as needed.

Which brings me to my current predicament. The ultrasound shows that my ducts have become more prominent (a medical term which apparently means that the scarring in the cbd is getting worse and the bile is laboring more to move in and out of the liver. All of this extra work makes the ducts swell and become more… prominent. Think: the Little Engine that Could). The Hirsch couldn’t get an accurate picture of the stricture (for the record still classified as suspicious and not sinister****) with the Ultrasound. So, I am waiting to hear about the timing of an MRI which will hopefully show whether a stent (aka another ERCP with Dr. May) is necessary at this point. Apparently, doing ERCP’s on people who are generally otherwise healthy (haha, remember when I was what passed for healthy these days?) tends to lead to deterioration. It’s one of those weird “X factor” moments that they can’t explain but have noticed time and again in Cholangitis patients. So, Dr. Hirschfield is reticent to recommend an ERCP at this point until we’re sure the stricture requires one. He is afraid it will end up doing more harm than good. And since ERCP’s aren’t my favourite thing in the whole world (needles, not being quite asleep, the rat poison-tasting numbing spray, and the whole shoving a giant tube down your throat), I am all for waiting. Apparently the only thing worse than doing the next round of ERCPs pre-emptively is waiting until I get all jaundiced and itchy because than the puts a lot of stress on the liver.

Anyway, despite the fact that this weirdly operatic balancing act is going on inside of me, I’ll leave it to the docs to worry about. I’ll wait to see what the MRI shows and decide from there. In other liver-related news, I have joined Dr. Hirschfield’s PSC gene/cell line study. 100 patients from Toronto Western (including myself) and 1500 patients from around the US are being coordinated through the Mayo Clinic (and how cool is that?!) to study the genetic make-up of Cholangitis. I gave a couple of litres of blood and signed about a thousand consent forms (I am fairly certain I gave a doctor in Venezuela permission to harvest my toenails should I ever die as a Zombie) and then took home a questionnaire. Now I feel this is a generous title for what is actually a novel regarding my health, my environment and my practices (smoking, drinking, etc). All of these I expected. Then they asked about my maternal and paternal grandparents, my parents, my sister, my blood-related aunts and uncles (on both sides) and eighteen of my blood-related first cousins in chronological age from the oldest. So, now people I haven’t spoken to on the telephone ever are going to get a phone call from me that I assume will go something like this: “Hi, it’s Ang. Remember me…? I’m Hoppy’s youngest? Great. Uh, so have you ever had Hepatitis? Sickle-cell Anemia? Ever worked with heavy metals? Been diagnosed with Primary Biliary Cirrhosis or Primary Sclerosing Cholangitis? Had an STD? What year exactly were you born? How would you rate your overall energy levels and health? Great. Uh, my love to the kids. Bye!” (read: Awwwkward.)

But, in the grand scheme of things I like to think my blood and tissue (gross) may help find a cure or something to help stave off the onset of PSC and all its pain-in-the-assness. And even if it doesn’t happen in my lifetime, maybe one day, somewhere, it will lead to a breakthrough. Or, perhaps they will simply learn how to re-grow me a liver by letting it gestate on my shin for a few weeks. Baggy pants and being careful with car doors doesn’t seem like too rough a deal for a presto-changeo new liver with no fear of rejection…

And now, the piece de resistance! Dr. Hirschfield actually had the biological clock discussion with me! At my (semi)young age. *gulp* Anyway, in short, he asked if I planned on reproducing. He said that there was no reason that I couldn’t have kids, should I want that. There was little to no evidence that it adds extra strain to your liver, although it does seem typical that PSC patients experience jaundice-like itching for the whole nine months (to which I say a heartfelt: f*ck that!) Anyway, he gave me some stuff to think about, the crux of it being that people with chronic illness tend to have more difficulty conceiving. He also cautioned against waiting until later in life to try: risks go up markedly the later in the 30s you go, and once I hit 40 he cautioned against trying. So, more stuff to think about. I have to admit that I never really wanted kids of my own – I always liked kids well enough, but I don’t have a burning desire to spread my genetics (especially now that I know my genes are like a perfect storm of shit). The only reason I would want to have my own children would be to make sure that parts of the people that I come from will have a place in future generations. But, like my friends say: there is always surrogacy. Or adoption. Or getting my own pony, and instead spending ridiculous amounts of money on other people’s children and bribing them to like me. Like I said, lots to think about…        

     

*Ah, My Cousin Vinny. Such a classic, classic film. I recommend it – just not in the first four weeks after an open colectomy… stretching/tearing out staples whilst laughing uncontrollably is not something I advocate unless you like to cry. (For T: “his shoes are made of wicker!”)

**Not a real blog, at least I don’t think. I am heading to the patent office right now, though, so I can soon develop my alter ego. The internet is going to be riveted by my innermost thoughts about leprechauns and if the insulation in my crawl space is giving me esbestos-related black lung. Stay tuned…

***This topic will be explored in more depth shortly as I want to dedicate some time to the idea of balancing illness with academia. Stay tuned…

**** See entry entitled “Suspicious and Sinister Polar Bears.” 

There's An App For That*

There is never going to be a great time to have UC or CD. However, sufferers today have a lot going for us: strides are being made all the time to further understand the biological, environmental, microbial, genetic, and nutritional factors at work. In addition to the thousands of specialists and volunteers who are working tirelessly on our behalf, we also have a modern phenomenon in our corner: the App. Short for "application", apps are a seemingly ubiquitous part of our lives. There are tens of thousands already in existence: designed to enhance our mobile lives by providing easier access to our favourite websites and games. For the purposes of this blog**, I will focus on several of the medical apps that I have been testing out over the last few months. 

"Can't Wait" 

Concept: As I have mentioned in previous posts, the "Can't Wait" app was produced through the Crohn's and Colitis Foundation of Canada. Like many other applications, it works in connection with your phone's GPS and pinpoints where the user is located. Once this has been established, all public bathrooms near your location are identified using the "Gutsy" mascot encircled in either green or red. Green circles indicate that the bathroom is currently open and available (based on the hours of operation of the building it's situated in, etc); red circles indicate the the bathroom in question is currently closed or otherwise unavailable.  

Reality: The app is actually pretty fantastic. It has been correct every time I have used it and it has allowed me to more confidently venture out into the world. It also has the added functionality to add user-specific locations to the program if they are not already identified on the GPS screens. One drawback is that the further away from major population centres you venture, the less the bathrooms are listed. If you are in Toronto, Ottawa or London it is not a problem; but less dense populations seem to also signal less-developed bathroom icons.

Vote: Worth it. 

GI Monitor

Concept: This app is designed to help Colitis and Crohn's patients shift their monitoring into the modern age. It allows for users to track everything from bowel movements and daily symptoms, to food diaries and current medications. In the description to the app, the creator argues that this will help usher in a new age of communication with your healthcare team. With simple clicks of a button, you can send your doctor or healthcare support worker a synthesis of your symptoms on a daily or weekly basis. Additionally, the app allows for monthly trending, allowing for the user to more accurately identify whether their disease is really in remission or actually headed toward a full blown flare-up, etc. 

Reality: I enjoy the functionality of the app. It allows me to simultaneously identify and articulate symptoms and put them into context by tying them to my Colitis. I do think that the designers may have been a little ambitious in their pitch regarding the communication opportunities provided: your doctor would have to be part of the same Wellness Group that designs the app in order to receive the updates of your medical data. Also, some of the functionality is frustrating to use. For example, under the medication section you can only enter each medication once. This completely ignores the reality that many UC/CD patients are put on drugs of various strengths, in various forms, at different stages of their disease throughout their lifetime. In the app, you can only select the dosage, timing and form of medication (infusion, PO, injection, IV, liquid, sublingually, etc) once.

Vote: Definitely has room for improvement, but overall I find it is a step in the right direction. Also, there is something about clicking on bowel movement icons that somehow makes it simultaneously more and less gruesome. Winning!*** 

CD Diary

Concept: I find this app to be both straightforward and useful. It allows for IBD patients (it is not necessarily restricted to Crohn's sufferers) to complete a daily on-line journal on the current state of their health. You can record notes on diet and portion sizes, highlight foods that produced significant reactions (either adverse or beneficial), record the meds taken and whether or not they have had any effect. 

Reality: It is not far off from the concept. Essentially, it provides an electronic platform, with pre-established topics and data fields, to record details that can be instrumental in communicating with your healthcare team. Some people may find the 'ol pen and paper just as effective and not inhibited by the dual plagues of sausage fingers and auto-correct,**** but I personally like being able to jot down thoughts related to pre-determined topics.   

Vote: Worth it, especially if you're a techy. 

Where to Wee

Concept: Identifies the location of bathrooms related to your location on GPS. 

Hopefully these can be avoided. 

Reality: Performs as advertised. Unlike the CCFC app, however, it does not indicate whether or not the bathrooms in question are open or closed. Much easier to navigate in familiar geographic areas where you will have a better sense of the buildings the bathrooms are located in and whether or not they are likely to be available. 

Vote: It's free, so I personally don't think it costs anything (except internal device memory) to have it as a back-up. All told, I do prefer the CCFC-sponsored app. 

___________________

* I am biased: I-phone. I-phone. I-phone! Down with the Blackberry! 

** Otherwise I would tell you all about "Plants vs. Zombies" and why you must have it. 
*** See Charlie Sheen section of the FML page.     

**** Sausage Fingers can be understood as the phenomenon of fingers being larger than the minuscule keys that said fingers are attempting to utilize to make words. Iphone keys are notoriously difficult to navigate because they are not raised or individualized. Rather, they operate on a touch screen that makes it very easy to mis-type. Auto-correct turns words that the operating system is unfamiliar with (for example: bitchitis) and turns it into a word it understands (for example: birch tree). This then changes the meaning of your entire message as well as nonsensically making the operator look like a spaz. 

Joy and Misery*

Yeah, I have been avoiding the blog. You're not imagining it. I found it was much easier to have the proper perspective (complete with witticisms and sarcastic comments), when procedures and hospitals were relatively few and far between. The last three months, however, have been rife with return trips to the hospital, infections, weird health complications and quite a bit of bitchitis on my part. As such, I didn't want to write and spread my relative misery around. Then the people who actually read this blog will stop being impressed with how together I am, and how much I take my colitis in stride (because I don't, really.) 

But, here's what I've been up to of late: the last week that I was in the hospital was probably one of the most miserable and uncomfortable of my life. The oxycontin pills that I had been prescribed for pain management were no longer effective (read: they are designed to be slowly released over approximately 12 hours and to provide continuous pain relief, but they were passing through my body whole, with little or no absorption). So, the doctors played around with other forms of pain relief, but to be honest nothing seemed to even take the edge off. The pain was completely foreign and seemed to be two-fold: internal and external. The external was kind of anticipated – sort of like when you have a cold and your nose gets all sore from constant sneezing and tissue-use. Only the cold was the stomach flu…and my nose was somewhere else. You get the idea.The internal stuff was terruhhhble. I was told it was normal and that it would calm down when my body re-learned how to work and adjusted to solid foods again. Those next four weeks literally dragged: I was up at all hours in the washroom, attempting (but not at all succeeding) to deal with unbelievable and unrelenting pain. Jpouchers, I have learned, refer to this pain as “butt burn”, which I feel is the equivalent to calling violent, man-devouring tigers, “house cats”. I choose, instead, to refer to this delightful feeling as the “fiery pits of ass-hell.”   

For those of you unlucky souls out there suffering from this same condition, I did mega-amounts of research trying to find ways to alleviate both the internal and external symptoms. For the record, I had very limited success.** The only thing that actually seemed to help was taking warm baths (which I could now do because I no longer had to worry about ostomy seals coming loose. Hey-o! :). I can recommend taking sitz and Epsom salt baths (which originally helped with external soreness), but be warned: once things start to calm down on the external side (in direct correlation to the slowing down of the bowel and bowel movements), I found that sitz baths actually made my skin feel so dry it felt like I was slowly being pickled.

All of this was complicated by the timing of my release from the hospital. I was able to see my GP (the loveliest of all lovely ladies), prior to her leaving for Christmas break. She helped where she could, but was unsure of her footing (she seems to have a fear of interfering with the treatment protocols prescribed by my attending physicians). She also left the number of a health group that I could get in touch with if I needed anything over the holidays. Dr. MacRae was also off, but I was given a phone number for the surgeon-on-call at Sinai if I had any questions or concerns. I appreciated the sentiment, and called all of the numbers in the hope of trying to speak to someone about my current symptoms and my persistent level of pain. None of the doctors or nurses I spoke to seemed willing (or necessarily able) to help me. It seems pretty prevalent for doctors (and especially less-empowered nurses), to fear interfering or derailing pre-established treatment plans. Telehealth Ontario, the medical group referred by my GP and the surgeon-on-call pretty much had identical sentiments once I had gotten a hold of them: “sorry, we can’t really help you, you should go to the ER.”

Suffice it to say, I ignored all of the doctor’s advice to get me back to the hospital. I refused to be back at Sinai over the holidays – things were depressing enough without being surrounded by ubiquitous Christmas Carols and hospital food instead of holiday treats and deliciousness (not that I ate any of that this year, but it really comes down to the principle of the thing). All of this was complicated by the fact that I ran out of pain pills. They weren’t really doing much to help with the pain that I associated with the surgery, but I had been on them without interruption for almost three years. So, the resulting detox was staggeringly difficult to get through. I remember reading “A Million Little Pieces” by James Frey a while ago and thinking that I could never have survived rehab. Regardless of what was fiction and what was literal truth in the book, the symptoms of withdrawal from alcohol and drugs as detailed were inescapable and all encompassing:  physical pain, vomiting, fevers and chills, headaches, twitches/convulsions, restlessness, depression, emotional distress, etc. etc. What I experienced was a microcosm of that: nausea, chills, fever and restlessness. I couldn’t sleep because I couldn’t lie still. I remember pacing the halls of my house for hours at night willing myself into exhaustion so that I could sleep for a while. I felt it in my arms the worst – it felt like I would literally drive myself crazy if I didn’t keep them moving. In desperation, I would lie with my arms pinned behind my back to try and get them to go numb.  

But, like everything else, the worst of that passed. After about four days, I started being able to sleep again with some regularity (more than two hours at a time) and am now narcotic free. (Go-Go Clean Living!) However, the pain really never seemed to abate so I went back to see my surgeon in early January. It turns out that the pain was not simply “fiery pits of ass-hell”, but rather a stricture that had formed at the junction point where the Jpouch attaches to the rectum. Scar tissue had formed and was impeding the ability of the pouch to fully empty. As a result, there was a bacterial imbalance in the pouch which was causing it to become enflamed. So, I underwent what is delightfully known as “dilation”; a process by which Dr. MacRae manually breaks up the scar tissue. And please, just take a quick moment to think about what she would have had to do in order to break up said scar tissue, the tools she employed, and the place that would need to be “accessed” for this procedure. Then know that this is one of those procedures where you are warned beforehand that “it’s going to be painful” (note that they don’t even bother to use the euphemisms of ‘uncomfortable’ or ‘pressure’ or ‘pinch’). And, boy, did they undersell it! YOW! (and another OW for good measure). Following the dilation (and the ensuing tears and screams…I wish I was embellishing), I felt better than I had since the surgery. I felt like getting up and moving around and the pain disappeared except for the occasional twinge. No more bag and no more pain; I felt golden!

But, the pain returned about 10 days later, so I had to go back in to see MacRae. She dilated the stricture again (which was as delightful as I remembered it) and gave me a course of combination Flagyl and Cipro for ten days. This seemed to do the trick and I felt fantastic (with almost Enormo Face-steroid energy levels) for about two weeks. But, this past week I found myself back at MacRae’s for another consult. She doesn’t think it’s still the stricture, so she’s diagnosed me with inflammation of the pouch (aka pouchitis) and put me on Flagyl for a month to try and knock it back. So far, I feel pretty good – I am comfortable leaving and eating outside of the house and rarely feel panic if I am unfamiliar with the area I am in and unsure about the bathroom situations.

We’ll have to see how the pain is managed with the antibiotics and take it from there. I heard rumblings about a possible “shock and awe” campaign starring the dreaded prednisone if the Flagyl is unsuccessful. But, for now… I am loving the non-ostomy lifestyle. Emerging on the other side of these complications and starting to examine them in retrospect, I would still make the same decision about the reversal. So, when I am having a bad hour/night/day/week… I try to be grateful. And if that doesn’t work, I read my new self help book: “The Little Book of Bunny Suicides.” It could, in fact, always be worse: I could be a suicidal bunny rabbit who is unwilling to compromise on my quest to end my life in the most heinous and grotesque ways possible. Or I could be Charlie Sheen.

* Dear Florence Welch: Thank you for covering “Hospital Beds.” You saved my life, again.

** See “Brought To You By the Letter J” page from the home screen for a list of these medications and how they compare to one another.