My Christmas gift to myself!

A brief interlude for some fun stuff.

I keep calling this “my new precious”, but really, I can’t not adore everything about this:

I actually curled up in bed the other night and started reading it as I would any other book. Thankfully I did not fall asleep with it on my chest, as I tend to with any other book; The Tome is 890 pages, and weighs 6 pounds. That could have been… unfortunate.

This is a big deal for me because it’s the first cookbook I’ve ever bought. I’d been reading good reviews of it, and my boss at my library job (to whom I turn on a frequent basis for cooking advice) has spoken well of their magazines. She gave me an extra issue of CI last year through which I leafed, but I felt too intimidated to actually try anything in it – even though it covers all of the intricate details of cooking that other books don’t, like why certain recipes work and how many times they tried certain things before moving on.

What’s funny about initially feeling intimidated by CI is that the first real large meal in the past few years that I remember attempting – I guess you could call this my culinary awakening – was CI’s baked ziti. One of the first food blogs I ever started reading (I confess: it was mostly because of the pretty pictures), Annie’s Eats, had a ziti recipe that looked amazing. [Sidenote: I grew up eating my aunt’s and my mom’s baked zitis, and while they were quite good, I felt like something was missing. Plus, I was already familiar with most of what happens when you make baked ziti, so I felt like this was a recipe I could reasonably tackle. Not like, say, chicken Kiev, which I haven’t eaten since I was in Russia. But anyway.] My boyfriend had also recently hinted to me that he’d love to eat anything I cooked, so, bound and determined to win him over with my mad kitchen skills and prove to him that I was worth keeping around – we’d only been together about six months at this point – I decided to make it for his birthday.

[Here’s a link to that ziti recipe. Go spend some time browsing her blog, because it is awesome:

http://annies-eats.com/2009/07/02/baked-ziti/ ]

As you’ll note, at the end of the recipe Annie says that it’s adapted from Cook’s Illustrated, March/April 2009. This meant nothing to me when I first looked at the recipe; not that their stuff is complicated, but you have to understand that at this point in my cooking career (HA HA HA) I was the sort of person who had gotten really good at macaroni and cheese by adding my own shredded cheese to the blue-box Kraft stuff. If pressed, I could cook chicken in a pan, or brown some meat in a skillet, but by and large I was living off of Things You Can Boil and Things You Can Microwave. (Except for my apple pie. Actually, I was perfectly okay with baking things, but capital-C cooking was hopeless.) So I knew nothing of reading recipes ahead of time and figuring out what to do when, and what steps could be combined with others, and what could maybe wait a little until later in the order of things. I also knew nothing of laying out your tools and ingredients before starting in a way that makes it easy for you to move from one step to another. (For someone who lays her clothes out for the next day the night before, you’d think this would have been a snap. But no!) Which is why when I turned on the water to boil the pasta, I had no idea I was stepping into something that ended up being way, way over my head.

After a couple of hours of panic and sweat and wondering why people actually did this sort of thing for fun, my ziti was cooling off on top of the stove and waiting to be eaten. Ultimately, it was delicious, though I had omitted a few things here and there in the interest of saving time and sanity. But the next time I made that dish, I made sure to re-arrange the order of things to make them sensible, not to mention prepare my kitchen beforehand. Things went much more smoothly, and I was much less stressed, and even thought it was sort of maybe a little entertaining. Plus, I felt proud of myself – it tasted good, and I’d done it all by myself. I did also eventually include the ingredients I’d omitted, and it tasted even better, leading me to believe that whoever wrote this recipe knew what they were talking about. (Ahem.)

So when, a couple of years later (i.e. now), when it became apparent to me after months and months of playing around with food and tweaking things and assembling recipes from friends and family and online sources, I didn’t think twice when I saw that this cookbook was on sale. (I did eventually notice that the ziti recipe was CI’s, and I laughed, because it figures that I would metaphorically go down the black diamond slope over the bunny slope.*) I feel that I’m at the stage in my cooking that I can start pushing myself, and really learn a lot, and this seems to be the best way to get there. Plus, I love all the science-y things about it; my inner chemist is fascinated by the ways in which ingredients interact. So, I’ll be writing here about recipes from this book that I try, and reporting their success – or failure, which may well be the case. It’s my hope that there’s a lot in here that’s useful, especially since I have to be very careful about what I eat these days.

Wish me luck! (First up: sautéed zucchini with garlic and lemon as a side dish!)

EDIT: The zucchini came out really nicely. I accidentally did a step too late, but I think that when I fix that it will be just as good. Hooray!

BONUS EDIT: I later made some chicken to add to a pasta sauce that I’d pre-made; I used one of the chicken recipes from here and was spooked by the less-than-five-minutes’ cooking time for the chicken that the recipe called for, but it came out beautifully. I am in love with this book!

*This metaphor is not without basis: the very first time I went skiing, in high school, I made a wrong turn at the top of the mountain and actually did go down the black diamond instead of the easy green hill I’d meant to navigate. “Go down” is a really nice way of saying that I fell down the majority of it and ended up tangled in the orange mesh they put up on the sides so you don’t fall off into a crevice. Ayup.

Now what?: part four

Picking up where I left off in part three, a huge consequence from this disease is that I’ll possibly have to curtail – or stop altogether – things that I enjoy doing, and consider part of my lifestyle. Running is one such thing; I’ve had some painful runs already (and good Lord, I mean bouts of exercise, not the other kind – !), and have powered through them, but I wonder what will happen if/when/I hope if I’m out for a run and have to stop altogether. Skiing is another such thing, and a pretty big one; I knew this was going to be one of the first things to go because my medical bills quickly made it quite clear that I was going to have room in my budget for only one of two things*: skiing, or figuring out what was wrong with me, and as much as I am defined in the winter by my ability to drive over to the mountains and throw myself down them on two wooden sticks, I knew that it was only practical to choose the knowing what was wrong with me. What hasn’t been easy is explaining to people why I can’t make it out on a given weekend, or why they really shouldn’t expect to see me at all this season; I’ve been avoiding it, and just mumbling something about “oh, I have something else planned” or “I have to work”. It’s disappointing, and it sucks.

Those last couple of sentences could also apply to my social life as well. I’ve now got to think about social situations in the context of “where’s the nearest bathroom?” and “are we doing something my stomach can tolerate?” and “what do I do if something goes wrong very quickly?”. That, and I can’t really stay out very late anymore, because I have to be home to take my medicine before I go to bed [this is non-negotiable according to the directions of the medication, and I don’t dare test it because, okay, you try waddling around your day with a magic bullet up your bum and not let it drop for at least 3 hours. Let me know how that goes, eh?], and getting the right amount of sleep is crucial – when my iron levels are low, again usually around my period, I get exhausted very quickly, and start to be unable to function. Getting enough sleep on a regular basis usually helps me avoid this, but when you’re a night owl like I am and have been known to try to persuade people to stay out for just one more round, it starts to get hard to tell people that you’re sorry, but you have to turn in at 10:00 or 11:00.  It’s frustrating, because I like hanging out with people, and I like being able to stay out a little if I want, and now I’ve got to look at every potential social situation through this new lens.

One logical question from all of this is the very natural “why me?”. Sure, I could lose myself in self-pity, wondering why someone my age who’s in the best shape of her life and is otherwise healthy is the person who gets hit with this disease. Why not some housebound misanthropic hater of meat and cheese who’s counting the days until he bites the dust anyway?** I could go on and on, but I decided early on in this process that it’s just a fruitless pursuit. You know the saying “shit happens?” I’ve just become the living epitome of it. To find it anything other than hilarious and absolutely dealable-with would be antithetical to who I am, so, I’m just not going to waste time on it.

I don’t want to come across as whining about any of this, especially since I know that there are folks out there who have diseases and situations much worse than mine. I’m really just trying to come to terms with what having a chronic disease means, not just in the physical realm but also in the psychological realm. I feel like that‘s the part that gets left out and buried and not talked about, and it’s a way for me to work out how well I’m coping at a given time. I’ll try to provide some cheese, too, to go with said whine if you like. But I warn you, it may be of the very-freshly-cut variety.

*I belong to my university’s outdoors club, and we get a very nice discount on student season passes at a resort a few hours away. I’ve met many friends – and strengthened relationships with friends I already had – on skiing and boarding trips  over the past few years, and it’s just sort of assumed that those of us in the group left in town will get a pass every year. Until this season, I was one of those people; when the snow was good, I’d be out there every weekend possible. I’m sort of glad that the snow this season hasn’t been that great, but I’d be lying if I said I didn’t miss it, because I do.

Pursuant to this, do you have any idea how much health care costs these days? Oh my gawd, I’ve been nearly set to faint every time I get a bill from the clinic. “You want to charge me HOW MUCH for sticking that tiny little tube up WHERE?!” And then I start breathing properly and re-read the bill and realize that I am one lucky [insert expletive here] because the four-digit number is what the total cost is that has been submitted to my insurance company, who will be happy to foot upwards of 85% of the bill. I’m still playing the waiting game on the bill for the colonoscopy; I’m taking bets on what the first of the four digits of that one will be, so email me if you want in. But – I’m appalled, frankly, at what people are being charged for these services. I can’t even begin to imagine what I would do without insurance – actually, no, I do know: I never would have gone to get this checked out in the first place. Wow. It makes me really, really angry at turns, that this is the sort of thing we can’t make affordable as a nation. Ooooh, I’m getting the angry goosebumps thinking about it, so I’ll just thank my lucky stars again that a) I even have health insurance and b) it is paid for as part of my graduate school package. I am fortunate, I am.

**My apologies if you actually know – or, um, are – someone like that. Oops. (But if you are and I don’t know you, can I meet you? I want to ask you some questions…)

Now what?: part three

Warning: this might get gross. You’ve been warned, though I’ll try to euphemize myself.

One of the great things about UC is that already sensitive areas of one’s life become a total guessing game that gets played seemingly on the whims of the bathroom gods. I saw a commercial on TV the other day advertising something dealing with Crohn’s disease, and the crux of the ad was that whatever product was being sold had the solution that could help sufferers of Crohn’s stop asking “what if?” – as in, “what if I’m at a party and suddenly have to use the restroom?” or “what if I’m giving my job-saving presentation and I suddenly have an intense flare-up?” Ten years ago I’d probably have made fun of the woman in the commercial acting out those scenarios, and even three years ago my grad school friends and I joked about leaking orifices during our masters’ exams, but not any more. I get it, and it sucks, because you really, seriously never do know when a flare-up is going to occur.*

I’ve read that for women with UC, their symptoms tend to worsen during their periods, and that flare-ups can be more common at this time. I was hoping it wasn’t true, but you’d think that the fact that I first noticed all of this starting during my period would have been a big red flag (no pun intended. Honestly, I swear – you’ll know when I’m trying) to the contrary.  Until my diagnosis, I didn’t pay too much attention to my periods, because they’ve never caused me much trouble in the eighteen years I’ve been experiencing them, especially after having gone on the Pill many years ago. Sure, I’ll get the usual cravings for red meat and chocolate about a week out, and for a 48-hour window of time will have temper tantrums only fixed by yet more chocolate, but I’ve never experienced the debilitating cramps and bloating that some women go through every single time they menstruate – and often for a week or more. If there are cramps, they’re minor; some foods make me bloat, so I’ve started taking care to avoid them. But by and large, I’ve been doing okay as far as periods go.

I’m nervously happy to say that that hasn’t really changed in the past couple of months, but I’m two days away from starting and have been having cramps and stabby-pains for two days. Last night I had a rotten headache that could have been the result of dehydration, and today my cramps have moved from my ever-dependable left side – the usual scene of the crime – to my right side. They’re nowhere near as bad as the stabby-pains I was having on Saturday (for more on that, see the post “Frustration”), but they’re still enough of a thing to make me uncomfortable.

The worst part of the pains, though, has been the gas that’s been accompanying them. While it could just be something in the past couple of days that I’ve eaten – whole-wheat pasta, a negligible amount of ground beef, a couple of spoonfuls of mayonnaise are the immediate culprits that spring to mind – I’m nervous that it’s just the kind of gas I’m going to get around this time of the month. I work in an office with several other people, and I can’t exactly run out into the hallway and fart, mostly because the trail would follow me back in. So I have to either wait for most people to not be around, or go to the bathroom, or just cross my fingers and let it go and hope that nobody notices. My inner 12-year-old boy would be delighted at this, but it’s a bit embarrassing; heaven forbid it happen to me when I’m teaching, you know? And have you been around me and noticed me laughing less? It’s because I’m afraid to, too hard, for fear that I’ll let something slip by accident.

A double bonus of this gas is that I’m not always sure if it’s just gas, or possibly something a little more… solid. THAT’s a fun game to play: Gas or Solid or maybe even oops it’s Liquid? It really is the “what if?” question every single time, because I’m never really sure.

I also have had to start allotting myself extra time to go to the toilet, because try as I might, I cannot go without using both door #1 and door #2. Well, okay, if I try extra hard I can avoid door #2, but it feels pretty bad to give it a pass (okay, that WAS intentional) and I’d rather not do it unless I’m trying to keep my medicine in.** This means that a simple sit-down is no longer just a simple sit-down, and that I will have to spend some additional time cleaning up, if you know what I mean. Couple this with the fact that I’m now going much more frequently because a) I feel like I have to investigate what’s behind door #2 at least once per hour and b) I drink so much more water than I used to, which if you know me was a lot; well, it’s more, because I feel constantly dehydrated possibly due to the thing in part a), or as a side effect from my medicine, or who knows. Anyway, couple those things – frequent toilet-hopping plus an increased need for cleaning materials – and I start to wonder why I’ve not yet taken out stock in Charmin or Snugglebutt or whatever. Seriously, I go through so much paper that I’m starting to feel really guilty at the environmental footprint I’m leaving (not to mention all of that flushing I’m doing, which I really do try to resist until the point of no return. Literally.). I could probably keep a CVS employed all by myself through sales of the Paper Goods aisle alone, and that’s to say nothing of what I went through during the preparation for my colonoscopy.  But, I mean, what if – here we go again! – I’m a houseguest and I have a particularly bad experience with door #2, and I clog their workings, and then have to explain myself? It’s not the worst thing, no, but I also don’t want to be that person constantly running off to spend time with the porcelain god and possibly missing out on lots of good times.

Which, I guess, brings me to a fairly logical transition into the next part of the “now what?” posts: the intangibles, or things I might be sacrificing in the name of digestive health. I’ll also discuss other ephemera and random thoughts.

*I’m pretty sure I can’t use all of this as a way to get out of my PhD exams, nor do I exactly want occasion to do so. But I can see this now: “So, K, tell us what you know about War and Peace”. [five seconds pass] “…pfffffffft.” [everyone looks around awkwardly and stifles faces of extreme displeasure] [finally, one of the professors speaks] “Well?” Me: “No, that actually is what I know about that work.” “…Oh. Okay then. Should we move on?” (I’ve never read War and Peace, though I’m made to understand that it’s somewhat compulsory reading for seekers of a PhD in Russian language and literature. Ever the stubborn one, I’m valiantly attempting to prove otherwise…)

**Yes, you can deduce from that that my current medicine is not orally administered. I call it my “magic bullet”; if you’re curious, the name of it is Canasa, and in my head I’ve started calling it Canasta because it sounds like much more fun if you think of it in terms of being a card game, or a musical instrument… that you wear on your fingers. Damn. Well, it’s still a party for someone, anyway.

EDIT: I wrote the draft of this post on a Monday, so it’s ever so slightly outdated at its time of publication. Whoops…

Now what?: part two

This is where I’ll delve into some of the specific concerns that I’ve had since my diagnosis.

I’ll start with food, since – if you know me you know this is true – it’s an important part of my life. I love eating. I love eating things that are good for you (in large quantities) and things that are bad for you (in, uh, moderation). I’m lucky to have always had a ‘normal’ relationship with food, but as I’ve gotten older I’ve realized that I really need to start watching what I put in my body, since my genes are not pre-disposed to treating me well in my old age. This also coincided with my decision to start exercising regularly, which led me at long last to re-tool my diet pretty heavily. I try as best as I can to eat well, and to eat what I want when I want; I allow myself a ‘cheat day’ once a week to indulge in the food that’s not so good for me, and get back on the good-food wagon the next day. It’s helped a lot in fueling me for exercise, not to mention getting enough sleep and generally feeling well.

In general, I try to eat a lot of vegetables and fruits, with my grains being whole (wheat cereal, oatmeal, snacky bars, the like), my fats coming from cooking oils and nuts and nut butters, and my dairy coming from plain Greek yogurt and the occasional cheese. Drinks are water, black coffee, occasional tea, and beer when I want it. It’s a fairly high-fiber diet, which I consume to keep myself full for as long as possible, though I eat 5-6 small meals per day to keep my metabolism going. When I was preparing for the colonoscopy, I had to go on a low-fiber diet for the week before, which more or less meant I couldn’t eat more than a handful of foods I was currently eating. Rice cereal, saltines, starchy vegetables, no raw fruits, no nuts, no potato skins – ack! I mean, yeah, it was only a week so it wasn’t the worst thing in the world, but it made me feel icky enough to notice the difference.

Unfortunately, now that I’ve got this thing which is a Thing, I have to pay even more careful attention to what I eat. Knowing that I forget something within two minutes if it’s not written down, I decided to start keeping a food spreadsheet as a Google document, so that I could have it handy anywhere I’ve got Internet access. [This does not include my phone, which is still a stupidphone of the flip variety. Hey, I have to retain one last shred of my Ludditeness, okay?] I’ve split it into three sections: Food That’s OK, Food That Causes Some Trouble, and Food That Isn’t OK. The first section should be pretty self-explanatory; here go things that have been questionable for other people (like coffee and beer) plus some things that have helped soothe stabby-pains in case of emergency (for example, plain hot tea seems to help calm my stomach very well). The second section is the one with the most wiggle room, since if a food causes me issues (not necessarily just pain, but also, say, heartburn or gas) it goes here first so that I can make notes on the degree of trouble it caused and whether or not I might need to test it again. For example, ground beef is currently on this list, because it’s not treating me well when I eat it – in chili form, or in burger form – but I’m not entirely convinced that it’s a total write-off just yet because there are so many ways of preparing and eating it. The third section is where I’m putting foods whose effects are so deleterious that I will not consider eating them any more. Brussels sprouts are currently in that section because they already caused me to make some serious, um, sounds, and I’m somewhat afraid to find out how much worse those sounds might be now. I hope this section will remain small, because there are already some foods I love on the Causing Trouble list, and I reeeealllly don’t want to see them move into forbidden territory.

Like hamburgers. I am a born carnivore, and I’d swear that my body tells me when it needs iron because I get the most insane craving for a bloody-rare burger that only that very thing can provide. I’ve tried veggie burgers, and while they’re good, they’re just not the same; I’m certainly not about to squirt ketchup on their insides to try and fool myself into thinking that.  One of the things I love doing during the summer is grilling burgers and washing them down with a beer. During NFL season, I also love going out to watch games at a local pub with friends, where we share pitchers and – yup – order burgers. Or ice cream. Maybe I just love almost anything that comes out of a cow*, but it’s my favorite summer treat… and winter treat, actually, since I contend it makes you feel warmer (especially if you eat it outside. Or does that only happen in Russia?). But, it’s part of the sugary-dairy category of things that I have to look out for. Quinoa, too, is on my watch list, which especially stinks because I’ve just started cooking with it in the last few months and  I love everything about it except its price – its flavor, texture, versatility, all of that protein goodness.

Anyway, enough complaining from me, as I’m sure the food spreadsheet will continue to present challenges for me in the coming months and years. But please, if I’m in your company and you offer me something – especially if you know I’ve had it before and enjoy it – don’t be upset if I have to start refusing it. I am not making this up when I say that it’s not you, it’s me. Okay? Okay.

In part three of the “now what?” series: Bathroom issues, because what better segué from food into anything else?

*I thought about writing “anything” there, but then I realized that there are emphatically parts of a cow that I do not like, and more parts that I have not tried that I am not sure I would like. I’m just covering my bases here in case one of you sends me a recipe for grilled bull testicles or something.

Now what?: part one

I’m probably going to chop the “now what?” section into smaller bits, because it covers a lot of stuff. I’ll try to make it make sense, but as you probably know by now, “Kat” and “sensible” don’t always belong in the same sentence.

Anyway, chronologically, armed with my new diagnosis and my new medicine I headed off to see family for the holidays. I went on my first long run as a person-with-UC, and got in 8.6 miles on Christmas Eve – not quite the 10 I’d been after, but I was dead tired the night before and didn’t want to overdo it. I did discover that if you run on major roads that lack sidewalks while wearing a Santa hat that drivers are much less likely to actively attempt to run you off the road, as if they have some personal vendetta against the very fact that you’re up that early and – horror of horrors! – running. I also finally pinpointed the house along the route that I swear must cook bacon every single morning for breakfast, because the past 3-4 times I’ve gone running past it it’s been pumping out this aroma that screams “stop what you’re doing and crash this breakfast party right now!” Augh. Torture! (Sidenote: I had to change one of my running routes back home because it took me too close to a fried chicken joint for comfort, and I knew one day I would cave in.) And then I settled in for a long day of watching football and snacking, and baking the apple pie for Christmas dessert.

Christmas came and went, and the rest of my travel-filled week to see other family and friends came and went all too quickly. I’d sort of decided before the week that I was going to not go out of my way to exercise, so as to let my body reset itself; that, and the timing worked out such that I’d basically be starting my half-marathon training program as soon as the new year started. So I didn’t run. I did exercise, but I didn’t run, and (confession: I hope this does not make me a bad runner) it felt kind of good. Based on the food I was eating (*ahem* never again can I have cheesecake for breakfast and Cook Out for dinner in the same day) it’s a miracle I didn’t gain 10 pounds, so when I was more or less home and closer to a regular routine, I decided to see off 2011 by giving the 10-mile run a go. I’d had some doubts as to whether or not this was actually a good idea, but the Cook Out-style footlong and onion rings for the aforementioned dinner the previous night convinced me that I really, really, really needed to do something in order to not feel like a degenerate sloth.

It was as if the fates had themselves decreed my path: New Year’s Eve dawned ridiculously warm. Like, 50 degrees at 7am warm. Clearly I couldn’t not run in that weather, given that I can’t remember the last time I was in Virginia and able to go running in shorts on December 31. So, off I went, going as slowly as I possibly could without falling asleep.

I learned yet another important lesson that morning: “mind over matter” is very much a real thing, and I am going to have to contend with it when I start going on my really long runs of 18-20 miles. After 8.5 miles, my legs started whimpering at me, asking me when we were going to turn for home and go grab a shower. I’d deviously mapped out a route that allowed me to take a shortcut that would do just that, but I decided to ignore my legs and keep on going. After 9 miles, they were full-on whining, and at 9.5 miles threatening revolt and collapse. But honestly, at that point with only half a mile to go, was I really going to fall over on the sidewalk and take a nap? No, I was going to go on and finish. I had to actively convince myself that I was only 4 blocks away… 3 blocks away… 2 blocks away… and then, huh, there was my endpoint. I stopped to walk to cool down. My legs did not collapse. (Were they happy? Oh no. Not even a bottle of wine and a puppy would have placated them in that moment.) I felt oddly disquieted. I’d just run farther than I ever had in my life… and I felt like I could maybe actually keep going. I didn’t, obviously, but it was such a kick-ass thing to realize that not only was my mind strong enough to get me to the end, but that my body was as well. For someone who’s just lost a good bit of control over a fairly large part of her being, this was huge.

I took a couple of days off after that to recover, and started the first week of the half-marathon training plan this week. I’ll have to repeat a few weeks before the timing is in line with the plan, but I don’t mind that, since I’m not used to running three days in a row and it will be nice to have some time to acclimate to that. Plus, should I get sick or be called for jury duty, I’ll have room in my schedule to make it up. These are all good things.

Right now I’m in that odd lull before classes start again in a couple of weeks, so I’m trying to work as much as I can in the apparently many spare hours I have. The possibility of jury duty every day between now and the 20th makes things a bit tricky to plan for, but (fingers crossed) so far it’s been cancelled every day for which I’m called. I’m looking forward to having a regular semester schedule soon, though, since I go kind of wonky with all of this free time. I mean, there are things I should be doing (*ahem* all completely academic-related), but come on, this is winter break! 🙂

In part two I’ll look at answering the food-part of “now what?”.

How I got into this mess in the first place: part four

(Continued.) (Running folks, skip ahead to the third paragraph, and then stop after “It’s not THAT bad, right?“)

Finally, it was time to leave to go to the GI clinic for the colonoscopy. My boyfriend, who is a saint, took me in and waited and took the most excellent care of me afterwards, including doing things like insisting on taking me out of there in a wheelchair despite my protests to the contrary, and immediately taking me in search of the grilled cheese sandwich I wanted more than anything in the world as my back-to-normal-food dinner.

As far as the procedure itself went, the before- and after-care I got were both top-notch. I was piled on with hot blankets while I was waiting to go in, and I was given as much ginger ale and toilet time as I needed when I came out. My only complaint about the entire process (excluding the preparation, mind you) was that I was in a lot of pain during the procedure. I’d been given anesthesia and told that I should feel waves of happy joy and calm washing over me; I kept waiting, and the ocean was being a reticent little twit, giving me at most a barely discernible wave.  Some time into the procedure I started feeling things I was pretty sure I wasn’t supposed to be feeling. I’m lucky in that I’ve not had to have many painful things done to my body in my lifetime, but I have to think that this was the worst, especially because I asked for more anesthesia and didn’t get it. Or at least I don’t think I did; my memory is fuzzy after I remember feeling the pain, but having talked to family members about it, it’s generally agreed that I shouldn’t have had to feel any pain at all. (Wah, wah, I’m so entitled! But really, like I said earlier, who really wants to feel a tube rooting around in their insides for that long?) So that sucked, but it was over eventually. I was told that I was clear in the colon (channeling Dave Barry: this would be a great name for a rock band), but that some biopsies were taken due to inflammation they’d found in the rectum, the results of which I’d have some time the following week. I was a bit skeptical of that, since it was the week leading up to Christmas, and I figured they were just as eager as I was to get home and be with family and friends and not have to do any work. But, I was told, “if you’ve not heard anything by Thursday, give the clinic a call”. Finally, I had a timeline on a concrete answer – and it didn’t sound like the worst possible outcome! But, I didn’t want to start telling myself that it wasn’t something only to later find out that it was, so I steeled myself to sit back and wait. And wait. And jump sky-high every time the phone rang.

Before the procedure the attending nurse and I had been talking about running, and I asked her if I could go for my usual long run on Saturday morning – about 15 hours after the procedure was finished. She said I should be fine, so I ate a hearty dinner (or two) and got plenty of rest, which was not accidental; I was absolutely exhausted, and had no trouble falling asleep. I woke up Saturday morning and felt basically okay, and went about preparing myself for my long run as I always do. I’d figured on taking it nice and slow, dialing the distance back to 7.5 miles, and not pushing myself if I felt any pain.

Well.

This is where I learned a very important lesson about running after a colonoscopy: it may work for some people, but I am not, not, NOT one of those people. I felt okay until my first downhill stretch, which was… oops, 0.1 miles into the run. I don’t know what it’s actually like to run while you’re being stabbed in the side, but I imagine this feeling comes pretty close. When I went uphill or on a level surface the stabbing subsided, since gravity was no longer working against me, but I also started to make the unpleasant discovery that the slower I went – and going slow is the point of the long run, yes? – the worse I felt. So you want me to speed up, even though I know I can’t sustain a faster pace for the entire time?  I thought. Nahhh… I think I’ll just hold my side like I’ve got a stitch in it, and soldier on. It’s not THAT bad, right?

This is where I learned a very important life lesson in general: listen to your damn body when it tells you something. I don’t know if it was stupid, stubborn pride, masochism, or the fact that I was too embarrassed to try to hop on a bus home that made me keep going, but I slogged through to the end. That I could barely stand up straight should have been an indication that something was not right, but I kept on going with my day – showering, going to the store, going on an eight-hour cookie-baking spree with some dear friends (which was an absurd amount of fun and 200% worth it, even though I didn’t learn until later that all the sugar I consumed while taste-testing did not do my digestive system any favors), even going out afterwards for dinner and beer. That was dumb. I was in a lot of pain, and at one point even considered calling the GI clinic to talk to the doctor on call to see if something was really wrong. I figured that the pain was due to the biopsies they took, but I ended up not calling them and went to bed, hoping I’d just sleep it off.

I did, more or less, but did the also-stupid (but, I admit, totally worth it) thing of eating burgers and pizza and drinking beer while watching football all day. Again, in retrospect, this was probably not the wisest thing for my digestive system. But I didn’t hurt so much any more, so I thought it was okay.

Monday and Tuesday came and went. I got no phone call from the clinic; instead, I got notice of mandatory jury duty service for me in early January. Fun!

Wednesday came. I was feeling better, but still with some cramping where I’d previously felt stabbed. I did some Googling (AGAIN with the bad ideas!) and found opinions fairly divided between ‘this is a concern’ and ‘you’re just slow to heal’, so I chalked my pain up to the latter. Mid-day I got up from my desk to go do something, and missed The Phone Call, which led to a solid ten minutes of staring at my phone before listening to The Voicemail. (Which was, of course, inconclusive, as it was just “Your lab results are in, please call me to discuss!”) So I called. We played phone tag. And finally – after nearly three months of wondering what in the hell was going on Down There – I had my answer.

The bleeding was a result of inflammation caused by ulcerative colitis (technically proctitis since it’s – for now – confined to the rectum), and the pain I felt was not from the biopsies but rather from the inflammation itself. When my doctor said “what questions do you have?” I was completely blindsided. Where would I even start? I thought about telling her, “Let me Google this and get back to you with my questions”, but thankfully my brain actually turned itself on and did not tell the woman who had now twice rooted around in my insides with tubes that the Web would be a better source of information than she, the specialist, and I told her the truth: I had every question there could be, because I knew nothing about the disease. Ironically, one of the first things she said was that I should look at the CCFA website linked at the bottom of this page (and every page on this blog), and it has actually been a really thorough resource as far as what the disease is and isn’t, what kinds of treatment are available, and what I can expect from here on out as far as changes to daily life and work and diet go. (If you want to go there to do some more reading, I’ll pause to let you do so. Back? Excellent!) We agreed on an initial treatment course, and made plans for a follow-up visit in late January. At that point, my day at work was effectively over, as I confess I spent the rest of the afternoon doing (gulp, sorry) Internet research and getting the word out to family and friends – though, in my defense, there were literally only a handful of us in the office and nobody was really doing much work anyway.

Thus began Day One of my journey to eventually understanding what all of this meant. It took a little while and a good amount of research for it to hit me, really, but there it was, at last: I have a chronic disease that I will have to manage for the rest of my life (unless surgery becomes necessary later on). It is by far not the worst disease a person could have – and it’s certainly not the worst of the inflammatory bowel diseases out there – but it’s still the sort of thing that can change the way I live and work and play. Can I manage that? Can my loved ones manage that? What happens if one, or all, of us can’t?

So that’s where I’m left, and where I’ll pick up in the next section of numbered posts, entitled “Now what?”, in which I stop looking back and start looking ahead.

How I got into this mess in the first place: part three

(Continued.)

So at this point I’d found out that I needed to get a colonoscopy done. This was Monday, November 7, and five days after that I was signed up to run a race in Richmond: an 8K that was part of the Richmond marathon and half-marathon. (8K is 5 miles, if you’re curious.) Up until the sigmoidoscopy, I’d never had any problems running, as far as pain or fatigue went. Happily, that didn’t change with the sigmoidoscopy, and I went into the 8K feeling good and prepared and ready to be awesome.

And I was! And so was the race! It was a bit chilly that morning, but I far exceeded the goal I’d set for myself as far as finishing time went. Maybe it was post-race euphoria, maybe it was the beautifully cloudless blue sky shining that morning, maybe it was the most excellent downhill finish, maybe it was the great fun cheering on friends running the actual marathon, or maybe it was my oddly looming sense of mortality – who knows what really compelled me to do it, but I went to bed that night knowing I was going to sign up for the marathon in 2012. Let’s forget the fact that at the time I’d never run further than a 10K (6.2 miles) – given a year, and the proper training, I knew I could make it happen. I’d already convinced myself I had cancer, so what was going to stop me from forming a bucket list, starting with one of the more insane things I’ve ever conceived of doing? For fun, I also decided to sign up for a half-marathon a little closer to home in the spring of 2012 to give myself a sort of halfway point at which I could measure my progress. I gave myself a week to think more deeply about those things, to make sure I really knew what I was getting myself into, but I knew from the moment I’d thought of them that I was all in. So, after a week, I signed up. Uh-oh. Shit just got real, as the kids these days say.

After committing myself to 39.3 miles of insanity, I decided it was time to get more serious about my running. I started working in some speed work to get myself to run a little bit faster, and I started slowly increasing the mileage on my long weekend runs. Basically, what I was doing was lifting weights three days a week, and running on the other three days, taking Sundays off as my lazy-football-watching days of rest. On day one of running, I’d run 3-4 miles, doing sprint intervals for the first 1-1.5 miles (walk 50 seconds, sprint 30 seconds, alternate until wishing for a swift death) and finishing with a gradually slower pace and then maybe ten minutes on an elliptical or other cardio machine. On day two of running, I’d run 4-5 miles, outside if at all possible, at a decent pace – not laboring for breath, but not not breaking a sweat, either. On the long-run day, I’d run upwards of 6 miles at a slow pace, the pace at which I feel like I could run all day were it not for a need to sleep or eat or poop. As the colonoscopy neared I increased this distance to 7 miles, then 8, then 8.4 the week before the procedure. My thinking was to ramp up my mileage on the long run so that I’d be at around ten miles by mid-January 2012, at which point my school schedule would switch and I could dial it back a bit and drop back onto an actual half-marathon training program (Hal Higdon’s Novice 2 program, if you’re keeping track). I was progressing pretty well, and had moved from being a constant 11-12-minute-miler to being a fairly reliable 9:40-minute-miler. In short, I was pleased with the way things were going, and was thinking about maybe trying for a personal-best ten miles on Christmas Eve, when I would be with family – specifically, my brother-in-law, who had been all too happy to keep me company on my Thanksgiving weekend runs.

(If you’re not interested in non-running stuff, probably you want to skip the rest of this post.)

If you’re not familiar with the intricacies of a colonoscopy (and I can’t believe you’re not), I’m happy to refer you back to diagram A:

A colonoscopy sends a much longer tube with a camera attached to the end into your entire colon, ending only when it reaches the sausage-like squishy pink mess in the middle of that enlarged picture. (That mess is your small intestine, by the way.) As with the sigmoidoscopy, air is blown in to inflate the walls of the rectum and colon to allow for clearer views, but that’s about where the similarities between the two procedures end. A colonoscopy is more time-consuming (it can take up to an hour), more invasive (because you have much more ground to cover), requires anesthesia (because tissue samples can be taken, and let’s be honest, who really wants to feel a tube rooting around in your insides?) which means that it requires you to take the rest of the day off and find someone to drive you home, and has an infinitely worse preparation. All of these things added up to a good deal of apprehension on my part, especially the preparation bit. People who have been through the preparation for a colonoscopy will tell you that it is awful, and they will possibly never be more right about anything in their lives. When you have to have yours done, resist the temptation to ignore their “back in my day” stories, because they will help you understand just how far this whole preparation thing has come in the last twenty years, and, with any luck, will go even further in the next twenty years when (Jeebus willing) most of you will be getting yours for the first time.

Essentially, you have to clear out your entire colon, which involves eating low-fiber foods (which is pretty much the polar opposite of my diet: skin-on fruits and veggies, roughage, nuts, lots of whole-grain cereals and snacks; little dairy or cheese and generally un-salty things, minimal meat. Also, as an aside, do you have any idea how nearly impossible it is these days to find cereal that does not contain whole grains? I feel like this is a first-world-problems thought, but it stinks to have to be forced to choose between Corn Pops, Captain Crunch, and Rice Bits. I went for the Rice Bits, which were less than appealing. Also-also, it bothers me that cereal companies can get away with putting “More whole grain than any other ingredient!” on the front of their cereal boxes when the very next ingredient in the listing is – wait for it – high fructose corn syrup. AUGH! But I digress… )  for anywhere from a few days up to a week before the actual procedure, and one or two days before the procedure you go on a liquid diet. You can still drink tea and coffee (thank Jeebus, otherwise at least four people would be seriously injured right now), and eat Jello and drink chicken broth; basically, you need to avoid red or purple liquids, and resist every urge to eat every solid particle of food within reaching distance, because you do NOT want to mess up the preparation and have to endure it again until you absolutely have to. The night before the procedure you get to drink the worst liquid humans have ever foisted on one another in the name of digestive health; if you’re actually lucky, like me, you have to take it in two doses: half the night before, and half the morning of. Reading the instructions for taking the liquid, I began to understand why it’s strongly recommended that you take the day before the procedure off work as well: you will be visiting the bathroom frequently, and you will not want to move outside of sprinting radius of said bathroom. Except it’s more of a hurried waddle than a sprint, really, because any extra exertion will cause problems. Ahem.

Eventually during the preparation process I got a little annoyed at Katie Couric for no discernible reason. Well, no, not really: she did undergo a colonoscopy on live TV, which I understand was a great help in educating Americans about the need to get this procedure done early if you think you might at all be at risk for colorectal cancer. But I’m pretty sure she didn’t talk about the completely un-glamorous side of the whole thing, which is the horrifically salty taste of the liquid you end up having to force down your throat no matter how much you feel like you’re going to immediately vomit it back up. (I hear that it didn’t come in fruity flavors “back in the day”, nor were folks told to refrigerate it, which I did with my ‘pineapple-flavored’ Golytely solution. I still haven’t gone near a slice of Hawaiian pizza, if that tells you how false the claim of the fruity taste was. But I cannot even begin to fathom how it must have been without any sort of flavoring, much less at room temperature. Egad.) It’s also the frustration you feel when you run to the store for some Gatorade to make the taste less terrible, and they only have the red and purple flavors available. It’s also the abject dread you feel waiting for the liquid’s effects to kick in; after several hours go by and nothing happens, and you resign yourself to just go to bed already because you have to work at 6am the next day, you are far from pleased when they finally do kick in and you find yourself welded to the toilet well past 3am. It’s the inability you have to share with anyone but a handful of people the sleep- and food-deprived hilarity you find in taking your laptop into the bathroom with you to watch stupid Youtube videos of animals doing things because you’ve resigned yourself to the fact that you can’t even leave the toilet long enough to lay down in your bed and catch a 5-minute nap. It’s the dread you feel at knowing that when you get home from work that next morning (because you foolishly didn’t take your early-morning shift off) that you have to do this all over again, but this dread is tempered by the good fortune you have to not have your roommates home during these rather trying 20 hours. It’s the unbelievable chill you feel at being so dehydrated and food-deprived that your body temperature drops three degrees and you can’t seem to get warm, no matter how many layers you bury yourself in or how much tea you chug. It’s the embarrassment you feel at producing the noises that you do, and it’s the utter fatigue you feel at not having nourished yourself for such a long time (at least I felt it very acutely since I am used to feeding myself properly to maintain my exercise schedule). It’s increasingly the anxiety you feel at not knowing what it is that’s causing you to have to go through this in the first place, and it’s frustration at that but also anticipation that finally you might be able to get an answer. It is, finally, not a small amount of dread at what that answer might be, when it finally comes.

(to be continued…)

How I got into this mess in the first place: part two

(Continued.)

When I say that the real fun began when I had my first consultation at the GI clinic, I’m being somewhat sarcastic: I had no idea what I was in for, physically or mentally. But I’m also being serious, because this is where the funny stuff actually starts happening – you know, stories you can’t exactly tell at the dinner table, unless you have a really weird/awesome family. But I digress.

The doctor at the GI clinic scheduled me for a flexible sigmoidoscopy – a procedure in which a lighted scope on the end of a flexible tube is stuck up where the sun don’t shine until it gets to that first bend in your colon, also called the sigmoid colon. I refer those of you less intimately acquainted with your innards to diagram A:

(credit: WebMD, whom I blame for all of the paranoia in the first place.)

The tube can only go as far as that first bend, but the procedure is much less involved, painful, and disruptive than the full-blown colonoscopy we all are supposed to get when we’re nearly twice my age. Compared to the colonoscopy, the sigmoidoscopy takes about 10-15 minutes, does not usually require anesthesia, and can have you back on your feet and going on about your day in nearly no time. (You’ll be a little bloated and passing some more gas, but beyond that, it’s really not that bad.) So it’s a logical first step when you have unexplained rectal bleeding not directly attributed to hemorrhoids or other ruptures in the rectal wall. Additionally, the preparation for this procedure is much, much, much less horrific (and that is exactly the word I have in mind here) than the preparation for the colonoscopy: mine involved waking up a few hours earlier than normal and giving myself a couple of enemas. I’ll spare you the details here because they pale in comparison to what was to come later; while they weren’t my cup of tea, they certainly weren’t awful. I did find myself wondering what pleasure anyone might derive from the process, as more Internet research (*ahem* I TOLD YOU NOT TO DO THIS) led me to learn that some people use them in a sexual manner. Hey, to each their own; not my cup of tea, as I said.

But – and there’s always a but, isn’t there? HA! – this practice that I had read about was the only thing I could think of when I stopped by a CVS on the way home from school one fine fall afternoon. I had this weird fear of being spotted and mentally accused of being into something I didn’t even know I wasn’t into yet, so I grabbed the box and ran up to the counter as quickly as I could, dodging anyone in a five-foot radius. When I got up to the counter, I had the extreme good fortune to be waited on by the brace-toothed, freckled, cracking-voice teenage boy, who (bless his heart) managed to keep enough of a straight face to ask me if I wanted a bag for my purchase. I said “yes, please” with as much composure as I could, and watched in what can only be described as bemused horror when he put it in the single most transparent piece of plastic that CVS has the audacity to call a bag. I actually had to bite my lip to keep from bursting into laughter. Thankfully, I had my school bag with me, so I put the CVS bag in there and left.

Never one to not tempt fate, I then decided to stop by a wine shop and see if they had some beer I’d been after. They did, and I bought it, noting with great pleasure the thick brown paper bag in which my beer was packaged. In went the enemas with it, and I was so beside myself with internal hysterics that I almost wanted someone to stop me, inspect the contents of my bag, and draw the appropriate conclusions about the type of evening I was just about to have. Alas, no one did, and I was left to return home and surreptitiously place the bag in my closet, secretly wishing I had a policy of inviting houseguests to peruse my closet beer selection just to see the look on their faces when they found the thing in there that was definitely Not Beer.

(Why is the beer in the closet, you ask? Simple: it’s consistently the coolest place in the house, so stuff doesn’t go bad there. Short of a wine cellar, it’s the best place I can think of to keep alcohol.)

At that point, I was left to wait. And wait, and wait, and wait, and wait. I had my initial consultation at the GI clinic in late September, and due to scheduling issues couldn’t get an appointment for the procedure until the second week in November. At that, it was a first-thing-Monday-morning appointment, which immediately led me to make all manner of “gee, this week is off to a crappy start” jokes. But it was a six-week wait, and when you simply don’t know what’s going on in your gut and can only irrationally conclude that it’s eventually going to kill you, those six weeks go by so incredibly slowly. The bleeding didn’t stop, either, which did not alleviate my fears. To double my fun, now that I had an Actual Procedure scheduled, that meant that I probably had to start telling a few people about what had been going on, not only to keep them in the loop but also to get further information about my family’s medical history. So I did; the family I got more or less in one fell swoop, and the boyfriend I got as we were going to sleep one night. (That sounds… wrong somehow. Anyway…) I’m pretty sure I imparted a good deal of my anxiety to them, as the news was not met with indifference, but really all I could tell anyone then was that it was a wait-and-see situation. So I waited, and waited, and finally the day came to see.

As I’ve alluded, the procedure itself was not bad at all, though I was a little afraid of moving funny somehow while teaching my class later that day and playing for my students an unintended symphony. But, as I’d suspected, it was inconclusive; nothing was found, which I’d dreaded, and as such the colonoscopy was scheduled, which I had also dreaded. I mean, I figured I had another good 20 years or so before I even had to think about getting one of those, right? Continuing the trend of problematic scheduling, I was penciled in for the procedure about a week before Christmas, in the last slot on a Friday afternoon. Crappy way to end a week, eh?

(to be continued…)

How I got into this mess in the first place: part one

Here I shall begin the tale of my diagnosis, and what led me to where I am today. Subtitle: how I went from being a brazen consumer of nearly every food and drink conceivable to being someone who now tracks said food and drink on a spreadsheet to remind myself what I can and cannot (or at least should not) consume, and the consequences therein. I’m going to split this post into a few parts to make it easier to read, since I have a sneaking suspicion it will take a bit of time to tell.

As I’ve indicated elsewhere, in September 2011 I started noticing some things that gave me pause. More specifically, I started seeing blood in my poop. You can offer up whatever psychiatric diagnosis you like for what I’m about to tell you, but I’ve always been the type of person who looks in the toilet when she’s done doing her business, which I actually wish more people would do because I feel like it would be really helpful in catching these sorts of things early before they get to be Really Serious Problems. That, and I’d love for someone to not think it weird when I find Elvis-shaped droppings hilarious. Anyway, I didn’t think anything of it at first because I thought it was related to my period, wherein blood and bloody things can often mingle with regular bodily excretions. I literally wiped and forgot, and my period ended.

But the blood didn’t. It was there all the time, on the toilet paper and in the poop, and I gave it a few weeks before I concluded that something possibly worrisome was, in fact, going on inside of me. Then I made the first mistake of this process: like any curious person with an Internet connection, I started Googling phrases along the lines of “causes of blood in stool”. Might I impart some unsolicited advice at this point? If anything at all is going on with you that makes you think something might be wrong with your health, skip this step and just call your doctor. Please. DO NOT I repeat DO NOT just start Googling things at random, because you will learn that you have everything ever that was given a name by a doctor at some time, and you will shrink into a terrified ball of human being and never want to Google anything again. My fate according to the Internet medical encyclopedias ran the gamut from hemorrhoids to colorectal cancer – and of course, where does the brain go when the gamut is run? To the worst end, of course. I became convinced that I had cancer, even though I was feeling no pain and generally didn’t otherwise feel bad (aside from the occasional exhaustion that, now that I thought about it, was otherwise completely inexplicable) and as far as I knew had zero family history of colorectal cancer. I sat on this for about 12 hours, and then picked up the phone and called the student health center at the university where I am.

The next day I saw a very nice doctor who apologized profusely for interrupting my afternoon with a digital rectal exam. I reassured her that it was okay, and she told me I had no palpable hemorrhoids or any fissures in my rectal walls. She sent me off with an order for a blood test (to see if I was anemic, which only then occurred to me as the sensible explanation for my inability to donate blood over most of the spring and summer due to low levels of iron) and a referral to the university hospital’s GI clinic. I got an appointment with them the next day, and later that week found out that my blood was in fact low enough in iron for me to be considered anemic and that I should take iron pills every day in order to get my counts back up while the bleeding was still occurring. Okay, no problem. (Cue gleeful excitement at learning that Kroger had a BOGO on iron pills that week)

The next day I went into the GI clinic as scheduled, and was a little less willing to say “no, that’s okay” when the doctor there gave me my second digital rectal exam in as many days. I wanted to tell her that she wouldn’t find anything, but since I’m the sort of person who tends not to believe something is true unless I’ve actually found it out for myself, I completely understand why she had to snap on the gloves and go in for a look. As I’d predicted, she didn’t find anything, and that’s when the REAL fun began.

(to be continued…)