CrapBag Lives! (Most of the Time)

Let the world rejoice: I am still alive. And stoma free. And back at home, released from my sentence at Mt. Sinai hospital, with its lovely IVs, medications and the constant walking, walking, walking…  And if I’m honest, no bag makes Ang very happy. No worry about leaks, no fear about people noticing the bag through my clothes and no frustrating and time-consuming changes. Life is grand, right? Well, it was for the first couple of days. I was feeling great through a combination of really good drugs (go narco-pistol!), having the ostomy actually gone and being relatively pain-free and mobile because the incision was really minor. So, the first day I was out of bed and starting my lovely routine of wake up, walk, sleep, walk, sleep, walk, babble incoherently to my friends and family, and pass out for the night. And it was good, really good… for about three days. And then I came off my clear fluids diet and was encouraged to eat what is known as a “low residue” diet – no fruits, no veggies, no nuts or seeds, nothing that will potentially get stuck while the swelling in my innards calms down.  So, I affectionately refer to the “low residue” diet as the Carbs, Carbs and more Carbs diet. I know, I know… what a terrible life I lead! When everyone else is stressed about going into the holiday season and laying off the carbs to fit into their New Year's outfits, I am told to lay off everything healthy and stick to what’s bad for me.

Anyway, this particular incarnation of the CC and more C diet did not agree with me and my new plumbing…in short, my body became angry and has stayed angry for the last three and a half weeks. To be honest, I didn’t really think much about the time beyond the surgery. And I probably should have because it has been pretty rough: a lot of pain, more weight loss, 15 + trips to the bathroom a day… and, did I mention the pain? But, I have high hopes that the four week mark (in two very short days) will bring some change for the better… and if not, I fear they may soon find my frozen body submerged in a snowdrift after I unsuccessfully tried to put out the fire in my ass. Stay tuned! And really: Merry Christmas and Happy Holidays everyone.     

CrapBag vs. the World

I hazily recall one drunken evening of my Undergrad. Several friends had come over to my apartment and we were involved in a game of “I’ve Never.” You say things that you’ve never done (or have done if you want to take a drink) and say things like “I’ve never high-fived Jackie Chan on a high-speed train in Berlin.” (For the record, I haven’t, and I am not entirely sure that Jackie Chan has ever been to Germany, that I would recognize him if I ever saw in person, or that Germany has a high-speed rail line. But you get the idea.) If you actually have done what the statement suggests, you must take a drink. More often than not, the statements get racier in direct correlation to how much alcohol has been consumed. Anyway, this one night in particular two of my friends and I decided to modify the game a little bit and focus the content in a specific direction. The game soon became a game of medical one up-man-ship in the style of “I see your XX and raise you XX.” And if the other two participants agreed that what you had just said matched or trumped what the previous person had said, then you stayed in the game.*

One thing that these particular friends of mine held in common with me was that they had had a rough medical ride as well. There were digestive problems, broken limbs, sprains, a premature diagnosis from one doctor that worried my friend would be developmentally handicapped because of the shape of her head at birth, in addition to kidney problems and chronic infections.** But, try as they might, they could not defeat me: I was medical-reject champion. And here’s the kicker: this game was played before I was ever diagnosed with Proctitis, Colitis, PSC or any of the other little diseases that have accompanied my happy trifecta. That’s right – my medical history has always been lame and fraught with disaster.

It began when I was three and I managed to elude my father’s careful eye. He was changing a light bulb on the porch, I was going badass on my tricycle and I somehow managed to reverse it down the stairs at the front of our house. In an Aristotelian turn of events that could only happen to me ***, I somehow managed to land underneath my trike and have the seat rim land precisely on my wee wrist. Now, here I should point out that I grew up in a home of tough love, where my parents wanted proof that there was something medically wrong with me prior to taking me to the hospital. And to their credit, I can see where they would have thought I was faking because even as a little kid I was kind of fragile and wimpy. So, they waited to see what happened with the wrist. And I, in my dedication to the cause of eating McDonald’s, somehow managed to climb out of my crib one-armed, jail-break style, and then go downstairs and tell my parents that it hurt. I am not sure if it did or not, but even as a kid I knew that a trip to the hospital meant taking us close to a McDonald’s where I could get some chicken mcnuggets (my obsession with fast food must somehow be written in my genes). Anyway, they apparently believed me because this was my very first (but nowhere near the last) trip to the ER that I took in my formative years.

Between this time and the time that I turned 13, I sprained my wrist twice more. The most sensational of which was when I was playing Teenage Mutant Ninja Turtles with my sister near our backyard. A new subdivision was being constructed and, in a feat worthy of my love at the time (Leonardo: blue sash, fought with a sword, the leader of the group), I climbed on top of a pile of insulation and jumped off, attempting to land on some make believe foot soldiers that were sneaking away. Since they didn’t exist, they did nothing to break my fall, and I landed weirdly on my wrist. This time I was bribed with an episode of MacGyver and my parents waited to see if the swelling went down. It didn’t and we went to the ER early the next morning.

Perhaps the stupidest thing I have ever done involved getting into full snow gear and attempting to jump across semi-frozen creeks. I had on snow pants, a parka, a toque, mitts, a scarf, huge boots…you name it, I was insulated with it. And, discounting the extra thirty pounds that this clothing added to my frame, I attempted to jump across a creek that ran through a childhood friend’s backyard. Suffice it to say that I shorted in distance and didn’t quite make it to the other bank. However, in a panic, I threw out my arms to break my fall and they somehow ended up snapping over top of one another. (Again with the Aristotle).  Anyway, I shuffled my way back to my friend’s place and got picked up by my slightly aggrieved mother (I think by this point she was wondering why I simply couldn’t sit still and keep healthy). I told her it hurt when I put my arms down, so she wisely stated: “don’t put them down, then.” Got it… three days on the couch, I think where my parents thought I would give up the charade and go back to school (I was a massive geek, I actually liked school), until my dad finally heaved a sigh and took me to the hospital. Turns out both of my wrists were broken. HA! I was vindicated! See mom and dad, I hadn’t been faking it! Joke was on them, again, when Children’s Aid came to talk to me about what “really happened” to me…At the time I recall being afraid because I thought that they would take me away from my family for being so retardedly clumsy. In retrospect, I find it hilarious that my father had to prove that I was loved and safe at home. I threatened to call them myself for years after that if I didn’t get my way; my mother encouraged me to do so (she had a great poker face).

Anyway, so I spent the next six weeks in various modes of embarrassment. With the two casts on, I couldn’t feed myself, couldn’t go to the bathroom or bathe myself, or brush my own teeth. The only upside was that my sister stopped bullying me for a short time because I threatened to squash her head between my two fiberglass casts. They made a very impressive noise when smacked against each other. The second the casts were off, however, all bet’s were off and it became open season on Ang again. I clearly remember the day, about an hour after my casts came off when I paused in my scratching of the worst itch I had ever felt (damn casts!), and I thought: okay, enough with the wrists. If I’m going to break anything else, let’s have it be a leg…crutches look kinda fun. Ahhh hubris. I suppose, in retrospect, I should have been more specific.

It was only four short years later that I found myself getting geared up for a fire drill at school (I told you: dork). It was set to commence shortly, so to pass the time I found myself (almost) playing basketball on the playground. All of a sudden, I felt like I had hit the funny bone of my knee. I reached down to rub out the sting and saw that my knee cap was no longer where I had left it. It had wrapped itself around my knee and was now pointing rather deliberately toward 3 o’clock. I admit to being a huge wimp at this point, and sitting down carefully on the asphalt and starting to scream for Maytag (I knew she would take care of me). Anyway, teachers rushed to my aid (I could always be counted to increase the drama at my little school), one of them called an ambulance and I was told to sit tight. Where precisely I was going to go with a dislocated knee, I wasn’t sure…but,   whatever. Then, all of a sudden the fire alarms went off and kids start spilling out of every school exit. Apparently the drill had been cancelled, but something had gone wrong, so the alarm went off anyway. So, now I had 400 kids walking past me, where I was laid up in the middle of the parking lot. I also managed to make several children I babysat for cry because they thought there was something seriously wrong with me. I felt like a total tool. Then, the fire trucks showed up to put out the imaginary fire and they established a “safety perimeter” around me in case there was a real fire because I couldn’t be moved any farther away from the school.

So, my mom showed up just before the ambulance did to take me to the hospital. The paramedics were great – trying to distract me with music selections and a blown up latex glove while they stabilized my knee and gently tied it to the other leg for transit. That ambulance ride was much more fun than the Remicade one, partly because I could breathe, and partly because Paul and Morris (aka my paramedic saviors) were quick get me off the asphalt so that I could stop scaring little children. Anyway, again to the ER…where I was told that too much time had lapsed and we had to get the knee back in before it swelled any more. I rightly interpreted this to mean that there was no time to give me pain medication before they snapped it back in… lovely. Anyway, it was quickly put back into place and I was put in a removable leg cast known as a zimmer brace that was designed to stabilize the knee while it healed.

This event preceded several more embarrassing forays into knee-related medical drama. I remember going to Blue Mountain for a weekend with some girlfriends. We were going to enjoy our time on the slopes and I was even going to learn how to snowboard. After my first one-hour lesson where I became intimately familiar with ass bruising (I tried to land on my back when possible because I feared snapping my wrists again if I landed on my front), we all headed back to our rented chalet to grab some dinner and then head back for night boarding. I managed to find black ice, feel my right leg skate out from beneath me and instantly feel my knee pop out again. My momentum was already carrying me toward the ground and because I was wearing boarding boots and carrying my board, I couldn’t right myself. I fell in precisely the right way and managed to hit the inside of my bad knee, somehow snapping the knee back into place. However, unluckily for me, the force of the blow to the inside of the knee cracked the knee cap itself. So, this time instead of a zimmer brace, I was given a full fiberglass leg cast to wear while the crack healed itself. That seemed to be all my poor knee would take, so I ended up getting a knee surgery shortly afterward. It was supposed to more democratically distribute my muscles over and around the knee so that it would stay in place.

I was told that the surgery would fix my problems, specifically my high patellas, so I signed up for a “just-for-fun” softball league the summer before I left for undergrad. Charging the plate to field a bunt during practice, and I felt the knee go out again, over top of the knee brace I had had specifically designed to keep it in place. This turned out to be the straw that broke… whatever, because I had to arrange for a major knee surgery (the second time it had ever been done in Canada) that involved breaking my knee cap, moving the entire thing down and shortening my patellar tendon. It was scheduled for Christmas break my first year of University. For those of you who don’t know, Ottawa is an icy hell hole in the winter, so to avoid falling down all the time on crutches, I decided to rent a wheelchair and make all of my new friends and my roommate push me around campus. Let me tell you, they loved it. Especially when people I had met two months ago were forced to help me shower… they were so lucky to know me, really (even if they didn’t realize it). Or when they were forced to drag themselves out of bed, at the crack of dawn, to drag me out of bed and take me to physiotherapy at the bottom of a huge hill. I suppose the downhill part wasn’t such a big deal, except their heroic restraint with regard to simply pushing me into traffic to die a quick death on the 417 on-ramp. The hellish part for them was pushing the wheelchair (and me, incidentally) back up Ottawa Mountain to get back home.****

Anyway, that pretty much concludes my knee saga, except to say that I had to have a third surgery to clear up some of the scar tissue from the second surgery. I have been prohibited from enjoying many of the things I used to, including: baseball, soccer, jogging (okay, I never enjoyed doing that), skiing, snowboarding, skating, rollerblading… pretty much anything that requires a lot of knee torque. A great excuse to be lazy, of course, but not being able to get out and do anything gets old pretty quickly.

So, all of this was to detail why I won our drunken game that night. Three broken, and two sprained, wrists, one faulty Lupus diagnosis, four knee dislocations, three knee surgeries, a heart murmur (functional) and an eye problem that prohibits me from seeing out of both eyes at the same time OR (more painfully) from seeing the third dimension in 3-D movies. Not to mention small incidents involving stabbing myself with an exacto knife and the like… And this all happened before I got sick. I am sure that people have a variety of explanations or rationalizations for why all of this has happened to one person… but, I prefer to think that the universe enjoys smiting me. And, so far all I have to say: well-played sir. Kudos. You know I’ve been a pretty good sport these last twenty seven years…but, if we could lay off for a couple of years, I would really appreciate it.                  

Also, I believe that I have taken some pretty heavy medical blows. In so doing, I believe that I have protected those around me from harm: one of my bff’s has never even broken a bone! Anyway, since being hurt and injured is apparently my schtick, I have decided to capitalize on it.***** I am not sure how it will work, but I imagine I am much like a communal voodoo doll. Don’t want to get sick? Pay Ang and she’ll get sick for you… I’ll keep you posted as my theory develops.  

* Oh, drunken entertainment. Whatever would I do without you? In addition to providing me with some of my very favourite stories about my very favourite people, it has also supplied me with ample blackmail material should any of my friends try to excise me from their lives.

** You’re welcome MNG. Xo

*** To borrow a phrase from Sam Seaborn and Aaron Sorkin regarding an Aristotelian confluence of events.

**** A special thank you goes to two of my heroes: EJC and MNG. Cheers, mes amies. But, we sure did have fun, didn’t we?  

***** Scene that follows perhaps the greatest line in cinematic history: “Are you hurt or are you injured?!”

"It Knows We're Here to Kill It"

So, I keep having this recurring dream, only it's not a dream. It's a scene from the movie Armageddon. For those of you who haven't seen it, let me set the scene: there is a giant asteroid hurtling toward the earth, hell-bent on destruction. How do we stop it? Turn oil drillers into astronauts (in a mere 12 days), and then send them into outer space (obviously). Once safely landed on this ball of death, the aforementioned oil drillers will drill, set nukes and blow the asteroid to smithereens (is there even a proper spelling for that word?). Then we will all be free to enjoy our gooey, animal-cracker love stories and, you know, buy things.

So, the scene that keeps replaying in my head occurs once our oil drillers/astronauts (who coincidentally look like chiseled models), land on the asteroid, suit up and leave the shuttle. The asteroid kicks up a fuss, spewing rocks and... other rocks, and generally making it seem as though the uninvited guests are precisely that: unwelcome. Cue Harry Stamper (aka Bruce Willis) saying dryly: "I don't think this thing likes us." To which Chick (Will Patton) replies: "That's because it knows we're here to kill it."

I relay this exchange to you for that one line: "that's because it knows we're here to kill it."* This is how my stoma has come to appear to me over the last few months. Prior to my second surgery (the one that created the J and gave me the loop ileostomy), my stoma (aka shithead and its many incarnations) and I got along well enough. Sure, I loathed it and pretty much everything it stood for, but since it was responsible for saving my life, I tried not to hold too much of a grudge.** For the most part, we tolerated each other; meaning it behaved itself and I didn't poke at it with sticks and other pointed objects just for kicks. But, the second incarnation (or shithead: the sequel) has been an entirely different story. I hate it; it seemingly hates me. I base this on the fact that it will not let me sleep through the night, ruins perfectly nice clothes (the limited stuff that fits me at the moment), aids the degradation of the environment by forcing me to do more laundry AND has forced me to wear an ostomy belt, which I had almost escaped entirely. 

And I'm sure it's all in my mind, but the closer we get to "S Day" -- aka Surgery Day (2 days!), the more the stoma seems to ramp up its hatred. Like it has finally understood that I am going to be getting rid of it and it has decided that this will be its final hurrah. At first I was more angry with it than usual: "why can't you just leave me alone, idiot!?" But, now, as the surgery gets closer and closer I find myself feeling a little bit sorry for it.*** In 56 hours (give or take) it will be nothing but a bad memory and I will be able to wear a regular-length t-shirt without worrying about what will be exposed. So, I now invite it to rage all it wants...it won't change anything and, in the end, I will vanquish it in the same way that Harry Stamper and co. saved the world in Armageddon. Only they got high schools named after them and got to play with nukes. All I get is the satisfaction of saying (and meaning): bring it on, bitch. You've only got two days left. [And, if push comes to shove, and you prove your supremacy I can always spoon (with myself) in the bathtub. Dignity and self-respect were so last year.]  





The symmetry of this scene in the movie can also not be over-stated. The teams go through medical tests to "qualify" as astronauts. At one point, a nurse holds up an anal probe and Chick says: "Ah hell lady, I just came here to drill." Her reply? "Good. So did I..." I feel your pain, fictional movie cast... 




* NERD ALERT!  One reason I love this quote is because it allows me to use one of my very favourite spelling bee words: "anthropomorphism". Which simply means ascribing human characteristics to things that are non-human, non-living or static. In this case, implying that a piece of rock could care about anything or want anything. Wow, you can take the girl out of the classroom, but you can't take the utter dweeb out of the girl...
** Also, it's hard to hold on to that high a level of anger toward an inanimate object. Believe me, I had a good run of maybe 19 days, loathing my body, my lot in life, and resenting everyone who had it easier than me. But, soon enough, that got old. And, my being pissed off all the time didn't seem to be making any of my shit (pardon the pun) any easier to deal with, it just made me pissed off about it. Besides, having a face all pinched and wrinkled because I turned into a harpy wouldn't help me land my dream man (a mash up of Ryan Reynolds, Ryan Gosling, Robert Pattinson, Joshua Lyman, Jake Gyllenhaal and Ronald Weasley). 
*** But not really.      

Enormo Face and the Mischief of Mice

 

Mischief of mice…I think that’s got to be one of my new favourites. It will go on the pile alongside other bits of dweeb humour and useless information that serves to both amuse and intrigue me. Along with a gaggle of geese, a murder of crows, a bloat of hippopotami, a leap of leopards, a tiding of magpies and a smack of jellyfish.  Or a romp of otters, a parliament of owls, an unkindness of ravens, a bevy of quail, a rhumba of rattlesnake, a murmuration of starlings, a tower of giraffes, a hedge of swans and a dazzle of zebras. Beat that: A dazzle of zebras and an unkindness of ravens.  And what are we but a “group of people”. I personally think that unkindness fits more aptly than group, but maybe that’s just my inner pessimist shining through. Either way, ours is lame, lame, lame.

And now; onto the next adventure of Enormo Face. We find our hero back in February 2008, wishing half-heartedly for death, or at least to slip into a hearty coma so that she could finally sleep through the night. And, so it begins:

I was first admitted to the hospital to get my UC under control a couple of months following my mom’s death the previous December. I figured I’d be there for a couple of days, they’d top up my fluids and I’d be on my way. Not so much. I was in the hospital for about two weeks before they realized I had pancreatitis (and I began my love/love relationship with substances like Percocet, Demerol, Morphine, Oxycontin and Oxycodone).* In the week prior to them finally figuring that out, I had been diagnosed with C Difficile, which is an awesome thing to have in and of itself, but when it’s combined with a severe case of Ulcerative Colitis it actually feels like you’ve won the lottery. Diarrhea? Already had that, thanks. Fever? Already had that, too, and it had begun to feel selfish to double up on everything. What about all of the other lucky people out there? Oh, and abdominal pain? I was three for three: a hat trick! Anyway, so I wasn’t getting any better, the steroids weren’t working to make my UC any better, I had pancreatitis and I was suffering with C. Diff [which the hospital staff kept arguing I got in the Caribbean on our Cruise, but because I didn’t present with it until I had been in the hospital for at least a week, I had my doubts (and still do to this day)].  So, there I was: miserable, dropping weight, so nauseous I couldn’t move my head without making myself sick, and being poked all day, every day in the vein attempt to get some blood work done (I am the pun-master). And along came a miracle! Or so I thought…

Remicade (aka Infliximab) is a new category of medications in the fight again IBD known as “biologics” or “designer drugs.” They were developed in a lab and are “designed to either block specific molecules or receptors on cells that are important to promoting intestinal inflammation or to activate other molecules or receptors that are key places in reducing intestinal inflammation. They have the potential to provide very targeted treatment and the hope is that by providing targeted treatment, the overall number of side effects will be reduced when compared to traditional therapies.”**

I remember the first time my doctor at the time brought it up. He essentially said it was the only thing left and I wasn’t getting any better. As I didn’t feel any better, I believed him. To be fair, I was kind of out of it and didn’t really have the opportunity (or the energy) to really examine all of the pros and cons of this new medication. All I understood was that it was my ticket to ever leaving the hospital. So, I agreed and they ordered it. I should probably take the opportunity here to talk about what it is, what some of the pitfalls and benefits are, and how it is administered.

Remicade is an IV solution that is infused over approximately 2-3 hours. The initial doses are administered at 0, 2 and 6 weeks, and then every 8 weeks or so you have to get a maintenance dose to keep the Remicade in your system and the disease in remission. The amount of medication needed is dependent upon the patient’s weight – it’s administered by kilogram. It is also reeeeaallllly expensive. I think my weight at the time was about 115-120lbs and the cost was almost $3000. I heard a rumor that there was a guy down the hall from me at Sinai and apparently his treatments cost almost $8000 – I have no idea how much he actually weighed to require that much medication, or how he managed to be both overweight and have UC or CD at the same time, but I suppose that’s a conversation for a different time. So, I was looking at shelling out approximately $3000 every two months, or $18,000 every year (once the initial $9000 had been paid out for my three establishment doses). Again…I can feel your jealousy.

Because I was in the hospital at the time, your taxes paid for my first dose (thanks everyone!). You guys also ended up paying for my second dose, because shortly after my first infusion, my doctors admitted they didn’t quite know what to do with me and my plethora of disease. So, I was transferred from the quiet, rural hospital where I was being quarantined for C Diff. and moved downtown to Mt. Sinai where I was put under the care of Dr. Steinhart, my new GI. My third dose was a whole different thing, and we’ll get to that in due time. But, suffice it to say: I paid for it. And by I, I thankfully mean my private insurance coverage (that was still in effect) and a program called RemiCare.***     

So, once I got past the colossal price, I looked toward the medical benefits: I could leave the hospital, get back to living my life and otherwise be a pain in the ass to all who know and love me. So, I had the first infusion at the rural hospital. A nurse stays with you the entire time and monitors things like blood pressure and heart rate. About 5-10% of lucky people have what is known as an “acute reaction” during the infusion that is characterized by flushing, warmth, redness, along with a feeling of chest tightness, and shortness of breath. However, I was told that these symptoms do not generally appear during the first infusion, even if you are in the lucky 5-10%. (I think, somehow, this is comparable to people getting stung by a bee and being fine, but then being stung by a second bee and having it be a huge problem. The first sting is known as “sensitizing” because it makes you more susceptible to stings in the future. Or something. Again, my degree is in the social sciences as opposed to a real science).

So, the first infusion went well. Got transferred to Mt. Sinai and was held there for two weeks for observation, nutrition and more steroids, while I waited to begin my second infusion.  So, I got my own nurse again who came to watch me, started the infusion and I waited for it to be over. Soon I began feeling very warm and sweat through my hospital gown. Shortly after, I felt like my face was literally on fire and it became a little difficult to take a deep breath. I tried to convince myself that this was in my head; a reaction to all of the information I had read about infusion reactions and the possible side-effects.  When my father and sister arrived, though, they took one look at me and asked what was wrong. So, I called the nurse, who had been conferring with someone in the doorway, and she immediately set about helping me: the infusion was temporarily stopped, I was given two Aspirin, and Benadryl (an antihistamine) was injected through the IV. I began to feel better, the fever broke again (sweat through gown number two), and they slowly re-started the infusion after having one of the GI residents come in and check some stuff. The infusion took closer to four hours, but it seemed to go pretty well after that, although I admit that the appearance of the CPR/Crash Kit next to my bed did little to calm my anxiety.

The next day I was allowed to leave and I was given the date and time of my next Remicade infusion which would be at what is known as an “infusion clinic.” These are places where IV meds are given to out-patients so that they do not have to keep returning to the hospital for treatment, and they can pay directly for their meds prior to receiving them.  I was told that it had been noted in my chart that I had had a reaction and that the infusion clinic staff knew to give me Aspirin and Benadryl prior to starting the Remicade, in addition to significantly slowing down the drip rate. FYI – in the majority of cases, these reactions are not allergic reactions per se, but are understood as “infusion reactions”. Researchers have argued that this may be because Remicade is a foreign protein (partly human and partly mouse), which may cause the immune system to activate and produce antibodies against it. These reactions are never fatal and the reaction always goes away with the cocktail detailed above.

So, for the next four weeks I waited for the next infusion, attempted to put some weight back on, continued to take my Prednisone and wrestled with my new symptom of debilitating joint pain. Apparently it is not uncommon for people who take Remicade to exhibit joint pain (which I find ironically funny because it was originally designed as a drug to combat Rheumatoid Arthritis, another inflammatory auto-immune condition).  I have lived with knee pain since my teen years, so I was no stranger to feeling stiff, but this was something else entirely. I apologize in advance to everyone out there who does suffer from arthritis, because you are made of sterner and tougher stuff than me. This side effect laid me absolutely low: I couldn’t sleep, couldn’t move and couldn’t get around the pain to concentrate on other things. It was everywhere; my hips, shoulders, knees, ankles, wrists and elbows along with being annoyingly persistent in smaller joints like my fingers and toes. Good times…

Anyway, I saw Dr. Steinhart about it and he tested my blood for an RH factor (apparently an indicator for arthritis or something). It came back negative and he said to wait and see how I did with the next infusion. A few days later, I showed up at the clinic and was shocked that there was no room for my father to stay with me. He was told to go home and that "we" would call him when "we" were finished. (Riiight). I was led back into a room with a lovely, giant chair, a television set, electrical outlets for laptops and mp3 players, as well as a mini fridge if I wanted to keep my lunch and drinks cool (note to self: they have mini fridges at infusion clinics so you can bring snacks and drinks. Who knew?). So, I climbed into my super-chair and got comfortable while a nurse set me up with my pre-infusion cocktail of two Aspirin and intravenous Bendaryl, before setting me up with a slow drip rate.While all of this was going on, she talked quietly to the only other woman in the room with us; a first-timer who looked super nervous and suspicious of everything in the room, including me.  

And then a curious thing happened: my face began to get warmer, and warmer and warmer. I thought for sure it was all in my head until my chest began to feel tight again. Then I began to have trouble breathing and feel a little light-headed. I called for the nurse and she stopped the infusion to administer more Aspirin and another thing of Benadryl. When she started it up again, I immediately felt worse: while I was flushed/feverish in my face, I was shivering so hard I began to hurt myself. Then the shivers seemed to turn very quickly into convulsions and the nurse knew we had a problem. She took the infusion lead out of my arm, ran another Benadryl and gave me four more Aspirin to swallow while she covered me in a blanket. While she bustled about, I tried not to knee myself in the face and looked to the Remicade “newbie” sitting in the chair next to me. I apologized for the drama and said “I’m sure this doesn’t happen to most people. I’m just lucky, I guess.” Then I couldn’t talk anymore because I was afraid I would bite off my own tongue with the convulsions. The nurse called her supervisor, a medical doctor who was seeing patients in the exam room next door. He quickly examined me, told the nurse to call an ambulance and began looking around in a cabinet. He pulled out a device I am familiar with only by association; two of my BFFs have severe allergies and have to carry Epi Pens (epinephrine auto-injectors for anaphylactic emergencies). He then proceeded to pull back my blanket, pull up my shirt, dodge my jerking knees and stabbed me in the stomach with it. (For the record: ouch, dammit!)

I continued to attempt to apologize to everyone who would listen: the terrified patient next to me, the doctor who seemed inconvenienced as he hooked up heart leads and kept taking my pulse, and the poor nurse who looked more alarmed than the patient. Then I apologized to the paramedics who showed up to take me to the hospital, assuring them I was fine while trying to kick myself in the head and convulsing so hard I feared I would break my own spine.  I was transferred to the stretcher and restrained so I wouldn’t convulse myself right off the side of it. (Good decision.)  Being wheeled through the lobby of a busy medical centre was a great experience, especially because I wanted to cower and duck my head in humiliation but I couldn’t stop jerking against the restraints long enough to effectively turtle. I also kept interrupting myself when I attempted to talk to the paramedics. In the middle of perfectly normal sentences I would abruptly bite off my words. For example: “I’m sorry. This is [teeth snap]…complete-  [snap, snap]-ly unnecessary. I’m f-[snap]-f-f-fine.” I believe at this point my credibility became laughable and I was pretty much ignored until they had me secured in the ambulance.

So, I got a free ride to a new ER (heyyyy!), where I was allowed to wait in the hallway, surrounded by people who seemed genuinely sick (you know, gun shots, heart attacks, a knife wound, stuff like that). And they kept staring at me because I looked like I was in the middle of a seizure (and probably feared that I was liable to take flight at any moment). Into the fray came my father, who had apparently been reassuringly phoned by the nurse from the clinic: “Your daughter was taken to the hospital by an ambulance. Something went wrong and I’m not sure what’s going on.” (Points for tact noted, especially when one considers that my father had lost his wife two months ago after an ambulance ride, and then had watched me getting sicker and sicker in front of his very eyes in the months following.)

Anyway, the epinephrine seemed to eventually take effect and I could relax my body so it didn’t jerk and flail anymore. After that, the triple doses of Benadryl I had been given kicked in and I became almost catatonic while trying to stay awake. I was seen by an ER doctor, who said three simple phrases following his examination: “I’ve never heard of Remicade doing this. You have to take Benadryl every four hours for the next 72 hours to make sure this doesn’t happen again. No more Remicade for you, ever.”  And then he shook my dad’s hand and said we could go.

So, that’s pretty much the end of my relationship with the ‘Flix of Mab. With it being such a catastrophic failure, I was soon back in the hospital (three days following my 25^th birthday actually), where they briefly tried Humira, which is another biologic. It has no mice proteins, so the risk threshold for a similar allergic reaction was greatly diminished. Instead of working intravenously, it is injected into your arm much like a vaccination. The initial dose is a bitch because you get stuck in both shoulders and both thighs, one after the other. But, when you get over feeling like a pin cushion, you begin to remember why Humira could prove to be the IBD silver bullet: if it worked, I (or one of my sadistic friends) could stick me in the arm, once every other week in the privacy of my own home. (A process that I, and any of my friends and family who wanted to try, was supposed to practice on an orange during spare time.) However, a week went by and it became obvious to everyone that it was not working. And, at a time when the only thing everyone seemed to agree on was that I was getting worse, the only option left seemed rather obvious. This is the moment when I met my BFFD (Best Friend Forever Doctor) Dr. MacRae, whose first words were that the colon had to go if I ever wanted to see the outside of the hospital. Don’t get me wrong; I love the depressing hospital corridors with their mint green paint, the bevy of sick people and the delightful concierge staff that are more inclined to stick you with sharp things than turn down your bedcovers and leave a mint on your pillow. But, I didn’t get HBO on the inside and I needed to get back to watching some decent cable television.  So, goodbye colon! (and, incidentally, goodbye appendix as well.  No one had mentioned the colon/appendix 2-for-1 deal.  And I know it’s one of those useless organs that we have apparently evolved out of usefulness, but I still felt like I should have gotten a receipt or something.)

So, what do I think about Remicade now? Honestly, I am torn. Obviously, I am the worst case scenario: the 0.1% of people who are actually allergic to Remicade or something contained within it. I would never go on it again, even if a doctor was stupid enough to prescribe it, which I doubt. But, if you’re asking me whether or not you should try it, I can’t really say. I have met with a lot of people who are approaching 5-6 years on it and they couldn’t be happier. No surgery, they keep all of their body parts in their designated place, and they get to live their lives outside of hospitals. And, most people only have a 5-10% chance of having any kind of reaction, which are quickly and efficiently handled by trained medical professionals. However, I do have some standing concerns that I think cannot be entirely dismissed. The cost (which is astronomical if the patient is forced to shell out for it themselves), the inconvenience of having to report for infusions every 8-12 weeks without fail, the reality that Remicade has been linked to immune system suppression (notably some patients develop tuberculosis), and the self-discipline it requires to reschedule your infusion appointments if you have an open sore or if you feel you are getting sick with something as benign as the common cold. But, lastly (and perhaps most significantly), researchers do not yet know what the long-term side effects are going to be. Remicade is in its infancy; they have no data on what its continual use does to other parts and other systems of the body in the long term. One thing they do know, however, is that there is no safe mechanism to get people off of it.  Over time, the body builds antibodies which eventually reduce Remicade’s effectiveness. Doctors are now prescribing double and triple doses to maintain the same level of disease control, without cognizance of how these protocols will eventually end or what the ultimate cost will be. Aside from doubling and tripling the literal cost (so, instead of $3000 a dose people could be paying up to $9000 or $10000 every two months); they are also delaying the inevitable when the Remicade will simply stop working. And, there is nothing “above” biologics on the medication ladder; when it stops working, surgery is seemingly inevitable. So, if that is the case, why delay? Save the tens of thousands of dollars and skip right to the surgery.

But, these are all rational (and rather cold) reasons. I understand, believe me, I understand the compulsion to delay the cutting as long as possible. I understand the desire to leave your body intact, and the hope of being able to avoid surgery forever. And, I’m sure for some people this may work. Some people’s UC and CD go into remission and are never heard from again. Some are able to control and manage it with other drugs from the IBD arsenal (as discussed in the previous entry).  And others, like me, face the inevitability of the high cost that this disease demands: surgeries, ostomies and the necessary concessions to a new life and a “new normal”. So…what do I think about Remicade? I think it didn’t work me, but it might work for you. I think you owe it to yourself to make an informed decision, which requires conducting research, talking to patients and speaking to your doctors. And I think that it’s a highly personal decision fraught with perils and potential triumphs. So, all I will really say is this: good luck, get informed and I’m here if you want to talk.           

         

*Yes, this relationship may cause me to appear on the reality show “Intervention.” But, aside from being necessary to combat and control my rather painful pancreatitis, I get the added benefit and dubious distinction of being a Narco Baron to my friends and family. And anything that imbues me with the title of “Baron” cannot be underestimated.

** Taken from Dr. A Hillary Steinhart’s book “Crohn’s & Colitis: Understanding and Managing IBD.” (2006). Now I do not intend to use this blog to hock or endorse products, but I will be honest about which products and materials have benefitted me. That being said, I will say that I know him personally and that he is GI doctor, which is how I heard about the book in the first place. Despite its gripping subject matter (I am being sarcastic but I can personally attest that it is vitally interesting to people who are slayed by this disease), I found that the book helped clarify a lot of the scientific information being tossed around that I didn’t really understand (and still don’t, if I’m honest). I have enjoyed reading it and have given it to several other people in my life (Alien and others) who are also dealing with this disease.     

*** For those living in Canada, there are several avenues to pursue to help you finance medications and prescriptions that cost a disproportionate amount of your paycheque/ takehome. Talk to your private insurance company. Look into programs run by the drug companies themselves (in this case, BioAdvance which has replaced RemiCare). And, look into Provincial programs that are designed to help offset catastrophic prescription drug bills. In Ontario this is called the Trillium Drug program. FYI, Trillium has begun to crack down on Remicade reimbursement requests, arguing that too many doctors are skipping right to these treatments without verifying if less drastic and invasive drug protocols would be successful. So, you may require a testimonial of some kind from your GI doctor attesting that Remicade is both necessary and required to save your life.   

Enormo Face and the Great Egg Caper

There are several hot button issues in the world of IBD research and treatment (and yes, I realize how lame that sounds, but to the people that are fighting these diseases every day…yeah, okay, even to us “hot button” still seems lame. Sorry.) I recently attended an educational symposium at Mount Sinai hospital and they were talking about the future of IBD research. The focus of these particular presentations was on the role of genetics in both Crohn’s Disease and Ulcerative Colitis – in terms of both predictors for those at risk (i.e. people like my sister who is at a higher risk because I have such bad Colitis), as well as anticipating if someone who has UC or CD will have mild, moderate or severe disease presentation (information, I might argue, that would have been helpful three years ago.)  Luckily for my sister, if not for people who are relatives of someone who has Crohn’s, CD has been found to have a much more prominent genetic element than UC.*

Other questions plaguing IBD researchers seem to be focusing on the big one: why do people get UC or CD? What causes it? Why are auto-immune conditions on the rise while other diseases, such as Polio and Smallpox, are being routed out and eradicated throughout the world? Why do 5% of UC patients get PSC, while 70% of PSC patients have UC? What is the connection between the two diseases? Is the hygiene hypothesis correct in questioning whether it is a lack of exposure to infectious agents and microorganisms during childhood in the Western world that is to blame for the skyrocketing incidence rates of auto-immune conditions such as UC and CD? Thankfully for me, and everyone else in the world who suffers from IBD and PSC, I am not in charge of figuring this stuff out. I give money and time when I can, but that is pretty much the extent of my involvement, aside from the portion of my day/week/ month/life that I spend in treatment and getting stuck with the dreaded needles…

In this, the first of the “Enormo Face Series”, I wanted to go over the traditional treatments used for the treatment of UC. Some of this may also apply to Crohn’s patients, but my experience has been with UC so the focus will be on that.

As you can see, the treatment protocols rely on the disease presentation and whether it is classified as mild, moderate or severe. From what I understand, doctors try to use the least amount of medication that they can to alleviate the symptoms, by first promoting remission and then finding maintenance dosage to keep patients in remission for as long as possible.

At the bottom “rung” of treatment options lie Aminosalicylates, the main anti-inflammatory drugs used to treat UC.  The anti-inflammatory action in these drugs is produced by 5-ASA and include the following types: Mesalazine (aka Azulfidine and including brand names Asacol, Pentasa, Salofalk, Ipocol and Mezavant); Sulfasalazine (aka Azulfidine); Balsalazide (aka Colazal); and Olsalazine (aka Dipentum). 5-ASA is poorly absorbed by the intestine and hence provides topical relief within the intestine. It is a non-systemic drug and is related to non-steroidal inflammatory drugs (NSAIDS) such as Aspirin and Ibuprofen.

Next up the rung are Corticosteroids. They are often used in conjunction within 5-ASA drugs to bring about remission of UC. After remission is achieved, it is sometimes possible to maintain it with 5-ASAs alone, but more often than not both drugs have to be taken for the maintenance of satisfactory health.  Corticosteroids work by reducing inflammation (through a medical process I do not understand). They act as immune suppressants to get the immune system to “stand down” and stop attacking the large bowel. A variety of steroids are used, including: Cortisone, Prednisone, Hydrocortisone, Methlyprednisolone, and Budesonide (aka Entocort).  

On the third rung you have Immunosuppressive drugs which generally suppress the immune system by altering the body’s immune response.  These drugs are generally understood to work in three broad streams: Mercaptopurine, Azathoprine and Methotrexate. I do not know much about them, as I have never been prescribed them.   

Near the top of our ladder lies the new holy grail of UC and CD medications: TNF Inhibitors. These drugs are also understood as biologics or designer drugs because they were created in a lab. The two big guns used under this heading, Remicade (aka Infliximab) and Humira (aka Adalimumab), work to inhibit TNF (which are proteins that somehow trigger more inflammation in inflammatory diseases such as auto-immune conditions). Neither drug can be ingested; Remicade is infused over approximately 2-3 hours via IV, while Humira is injected directly into the patient.

Obviously, if none of these treatments work the only respite for patients with severe Ulcerative Colitis is for them to have their colon removed. In my case, when I was originally diagnosed with Proctitis (January 2006), I was prescribed Salofalk (a brand of Mesalazine) suppositories. They were a very good maintenance dose for me, meaning my UC did not get considerably worse once I began taking them as directed. (In the spirit of full disclosure I should probably admit that I had several bouts of pancreatitis in the ensuing years, was kept overnight at the hospital several times and once had an historic stretch where I didn’t go to the bathroom for almost a month.)

Following my mom’s death, my UC got really bad, really quickly. When I was hospitalized they tried several Corticosteroids; mainly Hydrocortisone and Prednisone. The Hydrocortisone was given via IV, but I have had the pleasure of Prednisone (affectionately “the Pred” or “the ‘zone”) both through IV and by mouth at various times over the last few years. The side effects I experienced were intense and hard to miss: my face got GIANTer (a common side effect of corticosteroid use is known as “Cushing’s Syndrome” which often exhibits itself as “moon face”), which for someone who is already blessed with an abnormally large head, was torture. Aside from giantfaceitis, I became a superhero overnight. One of my biggest complaints since illness-palooza began has been my depressed energy levels: I feel like I can nap all the time, sleep all night and then sleep all day. It is often a challenge to push myself to get moving throughout the day. Not so while I was in “the ‘zone”: I had the energy of 10 (athletic) men. I also apparently transitioned to being Gaston from “Beauty and the Beast” and wanted to eat hard-boiled eggs and nothing else (except for the occasional tub of salsa, piece of Tilapia and 5-tonne bucket of sour keys). These cravings were indescribably immediate: I had to have eggs and I had to have them now. I often joked about chewing on the tables as well, as my appetite seemed to grow in direct correlation to my expanding “moon face.” So, all things being equal, “the ‘zone” can be murderous. Especially on my family, whom I dragged hiking at all hours and who I woke when I began vacuuming at 3 in the morning. I suppose I should be grateful that all I got was an enormous face and a desire to gnaw on the furniture; some people find latent bipolar(ism) on prednisone, or become increasingly manic while contemplating suicide....    

Tune in tomorrow for a continuation of this discussion entitled “Enormo Face and the Mischief of Mice.”

*This information is based on statistics provided at the educational symposium. They are contained in forth-coming journal articles (called Gastrointestinal Health and How It Sucks For You. But probably not. Scientists seem to take this stuff way too seriously). If I hear anything further about their publication in an open-source platform, I will update and link accordingly. The CCFC website is really good about keeping up to date on cutting edge research, so if you're crazy excited about this development, I would recommend checking there.  

Disease trumps Syndrome. Discuss.

Inflammatory Bowel Disease vs Irritable Bowel Syndrome

There are two types of Inflammatory Bowel Disease - Ulcerative Colitis (UC) and Crohn's Disease (CD). UC is arguably the lesser of two evils; unlike in Crohn's, inflammation from Colitis is far more localized in nature. Typically, the disease affects the colon (large bowel) including the rectum and anus, and only invades the inner lining of bowel tissue. It almost always starts at the rectum, extending upwards in a continuous manner through the colon.  UC can be controlled with medication and in severe cases (aka mine), can even be functionally "cured" by surgical removal of the entire large intestine.

The inflammation from CD can strike anywhere in the gastrointestinal (GI) tract, from mouth to anus, but is usually located in the lower part of the small bowel and the upper end of the colon. Patches of inflammation are interspersed between healthy portions of the gut, and can penetrate the intestinal layers from inner to outer lining. CD can also affect the mesentery, which is the network of tissue that holds the small bowel to the abdomen and contains the main intestinal blood vessels and lymph glands.

The symptoms for both UC and CD are oftentimes shared, making it difficult for a definitive diagnosis without biopsy or pathology results. Typically though, people with CD will experience more varied symptoms because the disease can be located anywhere in the GI tract.  On the whole however, Crohn’s patients often present with abdominal pain, cramping, diarrhea, nausea, vomiting and not surprisingly, weight loss and lack of energy. People who have CD will experience periods of acute flare-ups, when their symptoms are active and other times when their symptoms go into remission. The average risk of a flare-up in any one year is approximately 30%.
UC patients experience severe and bloody diarrhea, false urges to have a bowel movement, abdominal pain and cramping, nausea and vomiting, decreased appetite, weight loss, mild fever, anemia and loss of body fluids. Like CD, people with UC have acute periods of active symptoms, and other times when their symptoms are absent (remission). Unlike CD, there is usually not any pain during remission. During flare-ups, the pain is usually not constant but does seem to arise coincidentally with the urge to have a bowel movement.

Irritable Bowel Syndrome (IBS) on the other hand, can loosely (and highly unscientifically) be understood as IBD’s milder but still annoying, tag-along cousin (you know, the one who bugs you to take them to the amusement park but then won’t go on any of the really scary roller coasters. Instead they would rather play it safe and play on the kiddy rides.) The first difference is more than semantics: IBD is a disease and IBS is a syndrome. That means that in IBD, the GI tract is actually diseased; there is something physically, definitively and observably wrong with it. What this is, precisely, remains a mystery to researchers. Is it a result of genetics, the environment, microorganisms out of whack in the GI tract, diet, stress, or some other x factor that has yet to be identified? IBS sufferers, conversely, do not have a disease but rather a combination of symptoms related to intestinal discomfort, which can usually be treated.  

IBS sufferers can often experience similar symptoms to IBD patients, such as diarrhea, abdominal pain and cramping. However, there are significant differences that help distinguish between IBD and IBS (aside from the names). UC and CD are auto-immune diseases, which means that for whatever reason the immune system actually attacks the GI tract rather than defend it. IBS patients have healthy immune systems that function in the way that they were designed to: fight off infection and promote general health and well-being.  IBD causes bleeding and ulcers in the GI tract; IBS does not. IBD sufferers often experience fever, anemia and blood loss; IBS patients do not. IBD also does not tend to produce or prompt production of large amounts of mucus; in IBS it is often seen, perhaps as a way to help ease the elimination of waste materials.  

Another significant difference between IBD and IBS can be found in their causation and treatment options. With regard to IBD, the treatment options are limited, rife with side-effects and usually designed to improve quality of life without curing the underlying inflammatory processes that fuel the disease’s progression.* IBS sufferers, by comparison, have been diagnosed with a myriad of contributory factors. For example, gluten intolerance (celiac), lactose intolerance, improper levels of dietary fat, poor digestion, and anxiety issues can all interrupt the natural processes of digestion and gastrointestinal health.  As such, an equally diverse set of treatment protocols has been recommended for IBS patients:  high fiber diets (to help aid the passage of stool through the GI tract), stress reduction exercises, avoiding laxatives as well as the elimination of dairy and gluten products (where indicated).
So, what’s the big deal? The big deal is that I’m very competitive. If I’m going to be sick, I’m going to be sicker than you. So, ha! My disease trumps your syndrome. I guess I showed you… **


*Watch for the next two entries on UC/CD medication protocols, which follow the adventures of “Enormo Face”.
 **You are correct in surmising that I am not entirely right in the head. But, this preceded illness-palooza, so I have not included any mental symptoms (as of yet) to my IBD and PSC whine-fest. I am, however, always in the market for a new doctor, so maybe a psychiatrist is the way forward…?

 

Suspicious and Sinister Polar Bears

I have met many types of doctors over the last couple of years, and the only thing they seem to universally hold in common is their credentials as graduates of medical school somewhere in the world.  Some I have met are very open and engaging, some are quiet but authoritative, and others can stun you with a look that says “I like you better when you’re under general anesthesia and I’m playing with your insides.”  As I have alluded to elsewhere in this blog, I pretty much have a team of doctors, so I get to experience these myriad personalities on a rotational basis. My two big ‘uns right now are Dr. MacRae and Dr. Hirschfield (see side bar “The Cast of Ang’s Anatomy.) Dr. MacRae is a little (okay, a LOT) scary but she has a phenomenal reputation as a surgeon and, if I’m honest, I’d prefer that she was excellent with her scalpel and mediocre at bedside manner rather than the other way around. Dr. Hirschfield is my newest specialist and he had my trust right off the bat because his first name is Gideon and he’s ginger. (And all who know me understand my affinity for gingers: one of my favourite cousins, one of my favourite aunts, my future husband and Ronald Weasley all have in common this noble hair pigment). Equally scientifically, my father trusts him because he’s British and was educated at Cambridge, which apparently imbues him with additional medical powers that graduates of North American schools are lacking.

To be honest, though, Dr. Hirschfield has always scared me a bit because of what he symbolizes. For the most part (FINGERS TIGHTLY CROSSED), despite my next surgery being IBD-related and very close on the horizon, my GI problems and Colitis battles are largely behind me. The liver stuff with the PSC is this looming specter on my horizon that I don’t really understand but know enough about to fear. This means that whenever I go to see him, I dread several of the following words coming from his mouth: “The PSC has accelerated and we need to talk about transplantation.” (That’s the big one). “Your liver is overworked; stop drinking alcohol entirely.” [Granted, not a catastrophe, but I think it’s unfair to deny me the entirety of my holy trinity: Diet Coke, Smartfood and Pinot Grigio or Sangria. As I have already been forced (relatively) to give up Diet Coke and Smartfood, I am clinging to the last of my “make-ang-happy-material-goods.”] “You’re going to need another stent procedure.” (Again, not horrible, but definitely unpleasant. See the “I am Jack’s Raging Bile Duct” page and examine ERCP’s for further information.) Or “We got it wrong; it’s not PSC but a bile duct tumor.” (Granted, at this point, with numerous MRIs and CT Scans behind me, this is highly unlikely, but I cannot shake the idea entirely.*)

But, the Hirsch has said none of those things. He’s one of those really positive people that says bumper-sticker phrases like “you can do anything!”, “liver disease doesn’t mean an end to your life. People live with this disease every day”, and “if you want to travel, travel. See it all!” (As I said, he is the optimist to my pessimist and sometimes I want to snipe back at him with: “yeah, I can do anything. But, when my pancreatitis really gets going, and I take pills and stop solid foods and then don’t have the energy to turn myself over on the bed…is that when I’m supposed to be all I can be? When I’m supposed to call my travel agent and book my adventures?” But, as my friends and family can attest, these bouts of bitchitis pass and fade and I find myself encouraged by the little things again, like peanut butter, really good pickles and sour gummy hamburgers. mmm gummy hamburgers...) 

But, I digress. I know I’ve linked to a medical definition of PSC, but from my limited understanding, this is what’s going on in layman’s terms:  PSC is a disease that damages and blocks bile ducts inside and outside the liver. Bile is a liquid made in the liver and, therefore, bile ducts are tubes that carry bile out of the liver to the gallbladder and small intestine. In the intestine, bile helps break down fat in food.  Over time, PSC patients get inflammation of their bile ducts as a result of scar formation and narrowing of the duct. As such, bile builds up in the liver and damages liver cells. Eventually, scar tissue can spread throughout the liver, causing cirrhosis and liver failure. (Awesome.)

Anyway, today I learned from the Hirsch that these strictures (the narrowing and/or scarring) are classified as either Sinister or Suspicious, which I think is pretty wicked. From my latest MRI, he could see the stricture that I had back in 2008 which eventually prompted my diagnosis. In the image he could see that the scarring had healed and that the duct is now significantly narrowed, but that bile can still pass in and out of the liver as needed.** He also showed me my new stricture – my suspicious stricture – that has begun to form in the common bile duct. Apparently, suspicious is the type you want because it means they are merely looking at it and watching to see what it does. A sinister stricture, on the other hand, is bad news bears and pretty much means that full blockage of the duct is imminent. And, from my limited medical knowledge, once the common bile duct gets shut down, it is only a matter of time before the liver becomes cirrhotic and begins to fail. So, for the time being, Suspicious is winning the day and Sinister is on the Ropes. Stay tuned…      

* This fear is probably due in large part to a careless remark made by a nurse when I was undergoing diagnostic tests to try and figure out if I did have PSC. I was at Princess Margaret and the doctor who had referred me specialized in the area of liver oncology (at the time my doctor’s told me that the mass they found on the ultrasound could be a PSC stricture or a tumor known as cholangiocarcinoma). Anyway, as she was setting me up in the CT machine she asked how long I had had cancer. I freaked. I admit it.  Not then, of course, because that would betray my bitter and cool persona. However, once home I called friends and family and fretted to them about what this meant. Although they assured me then, and doctors have assured me since, that there is no evidence of a tumor, I am still struck by how quickly it can go the other way and can’t seem to entirely dismiss it.


**I wanted to take this opportunity to do a “shout out” to the mighty polar bear. While there is no cure for PSC, there have been studies that have linked the ingestion of a drug called Ursodiol to an improvement in the progression of the disease (I take this to mean that there is no causal link between Urso and PSC improvement, but it seems to work and they don’t know why).  The drug is basically a synthetic form of polar bear bile, which is more viscous (wateryish) and can navigate through the narrowed bile ducts more easily than a normal, healthy person’s bile. So, I take these pills twice a day and give a nod to the majestic polar bear that is, for the moment, apparently helping to save my liver… And, as thankful as I am for this medical advancement, I am horrified by this and want to make it clear that that Urso pills I am taking are entirely synthetic and have nothing to do with this barbaric practice. And because the previous link really made me sad, I give you this.     

Ang and Several No-Good, Very Bad Years....

I suppose that most blog's of this sort start at the beginning of the story and then chronologically relate how they have come to the present day. I, however, am both contrary and non-linear and have decided to move back and forth between what has come before and what is happening now. For me, the most logical thing to establish for this blog is what exactly is wrong with me (mental and emotional deficiencies aside). I will skip aside the tests, the traumas and a delightful bout of C-Difficile, and instead explain what all of the testing has established: I have, at present, three known auto-immune diseases, with a potential for a fourth as testing progresses. I know, I know, you're jealous. I can feel it.

The first is relatively benign and I have had it for as long as I can remember. It is called Raynaud's Syndrome/Disease/Phenomenon and, for me, it is more a nuisance than anything else. I have cold (my friends and family often use the term "dead") hands and feet, and when I am out in the cold I find that my ears and nose soon follow. I am also less tolerant to cold temperatures than others in my life, but that might also have a lot to do with the fact that I am a giant wussy. (That's right Uncle Oscar, I could NEVER hack it in Timmins!) Honestly, I would never have even known it was a real thing except I had to see a rheumatologist (blood doctor) in my teens and he was so concerned I was tested for Lupus. (FYI, Lupus is actually one disease that I do not currently have. Ask Dr. Gregory House: "it's never Lupus.") 

The second condition, and my most problematic thus far, actually started off as being benign as well. I had some problems during my last years in Undergrad, had various lovely tests and was diagnosed with mild proctitis. (A special shout out goes to my roommate at the time, Nat: your patience, grace, understanding, absence when I requested it and back rubbing at the window following diastorous bouts with Oral Fleet, have never and will never be forgotten. Heart.) Over the next several years I noticed that I wasn't going to the bathroom very often, which created a feeling of pressure in my stomach as it gradually got distended (think "Save the Children" television ads). I was treated off and on for this and the resulting pancreatitis, but was otherwise able to finish school and even do a semester abroad. When I received the news about my mother's cancer diagnosis, I took a leave of absence from my job and flew home to be her primary caregiver. During this time, I noticed that my symptoms were getting worse, but I put them on the back burner as my mom's health quickly deteriorated. Shortly after my mom's passing, I, too, was admitted to the hospital for what I thought was a flare up of my proctitis. I was very, very wrong. It seemed that between the time my mom had been diagnosed and the time that I was admitted, my proctitis became full blown Ulcerative Colitis and my colon was horribly inflamed and diseased with bleeding ulcers. I will get back to the fun that the next few months were for me, my family and friends as well as the nursing staff at several hospitals. But, I wanted to make it clear that eventually my Colon was removed through a surgery that I was told was my only way of ever leaving the hospital. I had an ileostomy constructed using my small intestine and I left the hospital thinking that I would have it for the rest of my life. But, through a change in the pathology and in consultation with my doctorsssssss (several pluruals required), I decided to get a reversal. This essentially moves the external pouch to an internal one. The basic idea is that they use part of my small intestine to literally make a J (hence the name "J Pouch") to function sort of like a colon does. Many, many months later, I currently find myself between operations 2 & 3, with the J Pouch created while I wait for what is known as the "Take Down" -- the operation that will take down my Ileostomy and attach my innards sort of like a normal person's. I will go to the bathroom pretty normally, I will not have anything external to my body and I will no longer have to worry about the fine art of layering clothes if I choose not to (can I get a universal high five?!). So, that's my number two. 

My number three was a completely undesired surprise. Picture it sort of like kicking a sick, blind puppy repeatedly while he's already down on the floor. (Now, I am known affectionately as the bitch to my nearest and dearest, but I think even they would agree that I was sort of like the puppy in that analogy). After returning to normal life, approximately five months after my first surgery and the creation of the ileostomy, I saw several of my bff's for the first time in a while. I was cheerfully told that I looked a bit yellow. I thought they were kidding. They were not. After another round of tests, more doctor consultations, three disturbing acknowledgements that my case was not "typical", several medications and one doctor-populated diagnostic roundtable (picture House, MD) I was informed that I have what is known as Primary Sclerosing Cholangitis (PSC). It is a rare, but not entirely uncommon disease often associated with people who have Colitis. They do not, as yet, know why. Nor do they know why I was blessed with both. Just lucky I guess... 

So, as of right now, I have been diagnosed with Raynauds, Ulcerative Colitis and PSC. Future tests will be examining the possibility of whether or not I also have Chronic Pancreatitis (And the hits just keep on coming...). But, I remain optimistic. Or as optimistic as someone who has been lucky enough to star in a cross between episodes of "It Could Happen To YOU!" and the forthcoming show "Your Genetics Suck."* I also take heart in the idea that I may soon be given a free set of steak knives when I reach some kind of new medical/health low (probably by someone who makes knives and thinks my life is pathetic. But, hey! free knives...)  

*This show is not real. Yet. I have great faith that Aaron Sorkin will read and fall in love with this blog and adapt my life story to the bigscreen starring the entire cast of the West Wing.        

Honest To Blog...*

I suppose that there’s a certain amount of symmetry in writing my first entry on the 23^rd of October. In addition to being the day that the Smurf’s first appeared in print (1958) and the first time that the UN General Assembly convened (1946), it is also my mother’s birthday. So many things we shared together; some out of necessity as all mothers and daughters do, but others out of a desire to truly participate in one another’s lives. This was a pattern that had ebbs and flows, as all relationships invariably involve, as we grew both together and apart, particularly during our dual ascension into the abyss: my tumultuous teen years versus her murderous menopause. But, I am gratified to say that when my mother did pass away, it was during a really great time in our relationship. The months leading up to her death were fraught with devastating news and incomprehensible realities, with timelines, medications and terrifying schedules. But, they were also a time for connections and laughter, for openness and clarity and for the certitude that we were (perhaps finally) starting to truly know one another.

And, unbeknownst to us at the time, there was also a deeper connection and an unforeseen symmetry to my mom’s illness and death; her cancer diagnosis proved to be the catalyst for my own health struggles with Ulcerative Colitis and Primary Sclerosing Cholangitis. But, unlike my mom, I can say almost three unbearable years later: I am still here. I am still fighting.** And both of these truths will still be true tomorrow.

I hope for this blog to be a place where my story can be a told. And by telling my story, I hope to be able to provide a forum for other’s who struggle with these diseases to share their experiences. Despite the serious nature of this first entry, I should warn you that my sense of humour has been warped by both circumstance and the company I keep** and will inevitably weave throughout my tale. I should probably apologize in advance, but I’m not really sorry because I really believe that sometimes the ability to hold onto laughter, even if inopportune and inappropriate, probably saved my life. To paraphrase something I read in a book once, “maybe if you’re given a handicap, you’re also given a few extra doses of humor to take the edge off.” Sometimes I feel like having a well-developed sense of humour is a pitiable weapon when compared to the medical and emotional battles being waged, but eventually I remind myself: I am still here. I am still fighting. I will continue to fight. And, if all else fails, I find that oxy contin helps level the playing field.

   

* That is a reference to the movie Juno. I will apologize in advance for this: I am a pop-culture junkie. I consider myself OCD, but I think that’s just a convenient way of labeling my behaviour when I become lost in the artistic accomplishments of others. Speaking from the perspective of someone who actually repels any type of creative expression, I really do find something extraordinary in artistic endeavour: music, film, television, novels… you name it, I’m a sucker for it. (And probably have an appropriate quote or lyric recitation to share with you in any given situation.)

** The fact that I am still here, and still fighting is undoubtedly a tribute to my colossally “too-good-for-me” friends and family. They know it, I know it. They sometimes like to rub it in. Again, assholes. Be that as it may, without them…[use of ellipsis is both for effect and because I do not have the vocabulary to properly articulate what my life would be like, (if it would even exist) without their continued support and encouragement (and, yes kids, calling me a dickhead and planning my future profile on “Intervention” continues to count as support in my book ]. So, thanks Team Crapbag. You rock my face off.