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. 

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.