Post #116: My holly jolly colon

Get in my face, you delicious little sugar grenades. 

Late night, 3 a.m. Awake and in pain. Sound familiar? This, my friends, is the worst kind of SSDD. 

I drenched the sheets with sweat. I remember, when I was trying to lay perfectly still so that I wouldn't move and make the pain WORSE, that I seemed to be sweating between my toes. Pain twisting my insides, shaking, forcing myself to take slow, measured breaths, failing and hyperventilating a little, and this is what pops into my head!?

Toe sweat: is that a thing? Do you sweat between each toe? Are there sweat glands down there? Is it weird to have sweaty toes? I mean, I always think of feet being sweaty, but not the toes, really. Is each little space between them like an individual armpit? Hmm. 

All weekend I baked (6 different kinds of cookies, in your face MARTHA), and then ate cookies and made myself sick. After a particularly sugar filled binge yesterday morning, I ate a veggie filled lunch to compensate. So, sugar or carrots? Cookies or zucchini? Peanut brittle or celery? What exactly set off my AAC? Hard to say. 

Not that it matters, whether it was the cookies or produce, when you're in bed at 3 a.m. sweating between your toes. 

But oh, that familiar holiday food paradox. I'm talking about the way the holidays (I'm looking at you Thanksgiving and the entire month of December) trick you into thinking that for some reason you DESERVE to eat real food during this specific time period, as if the unwritten (and unknown) laws of your tricky colon suddenly don't apply when the world is decked out in pine boughs and velvet red ribbon and holiday fucking cheer. 

It doesn't matter what your colon did yesterday, or the week before, because all of a sudden it's THE HOLIDAYS and you should let yourself enjoy that cookie, that candy, that giant roasted turkey leg (or whatever). Come on! You're around people who can eat whatever they want, and you soooooooooo want to be like them. The urge to "pass" as a normal eater is never so strong as during this particular season, so you let down your guard a little, relax your strict food rules, and indulge, as though hypnotized by listening to "White Christmas" one too many times. 

You swap Christmas cookies, and go to festive holiday lunches, and sample a few too many of the treats that you bake for other people. And then at 3 a.m., the pain comes, and the natural conclusion is that you DID THIS TO YOURSELF. This notion is further reinforced by the first thing people say when you tell them about your latest setback: "Well, was it something you ate?"

Nothing like a little internal (and external) food shaming to keep your sore colon company!

Here is what I know: my colon does this sometimes, and it doesn't matter what I eat. But it's hard not to draw the reasonable conclusion, especially during this season of unrestricted, mindless eating. I'm not immune to the lure of sprinkles, and I'm a sucker for stuffing. Guilty as charged! But this was not my fault. Fistfuls of Christmas cookies didn't help the situation, I'm sure, but the colon has a logic all its own. 

So now I'm sitting here typing and sipping my meals through a straw. I did have a pretty good run: I managed to swing Thanksgiving, and some of December, before my body got up and slapped me, reminding me that ultimately this is my reality, this 3 a.m. pain, not those few days of gleefully pretending my colon was the same as the other girl's. 

I can (and will!) enjoy the rest of the season, the first snowfall and the exchanging of presents and the visits from family. But now, as pain throbs in my side, I will do so with my mouth closed and my guard up. Depending one when the pain lessens, I might be eating soft foods till New Year's. Like it or not, that's just the reality of the situation, my situation, the one that involves an angry and unpredictable colon. I didn't ask for or cause this (repeat to myself a thousand times), and nothing takes the shine off holiday festivities like a bucketful of Prednisone, so I'll be taking it easy. 

And while I'm being kind to my body, I'll try to remember to be a little kinder to myself, and remember that this season can still be celebrated in a way that doesn't involve the massive consumption of butter, sugar, and eggs. There is, hopefully, seasonal happiness beyond the cookie jar. 

Post #85: Extreme sexiness ahead

Hahaha, this made me  laugh. And I haven't really been laughing today.

So. I am a year older. It's now been exactly a year since my diagnosis, and to celebrate, I am going to have my innards roto-rooted on Friday. I don't want to write some depressing, introspective review of the last year, because I have been composing that particular essay in my head for the last two weeks. For the most part, the things that stayed the same have been frustrating, the things that have changed have been scary, and a healthy dose of uncertainty has added fun to the mix. Now you're all caught up.

A very funny, wise friend from college wrote on my FB wall "Congratulations on another turn around the sun!" and for some reason, that seems like the perfect attitude to adopt at this time in my life. I usually have some angst around my birthday, as I mentally tabulate all of my successes/failures to date, but this year I wanted to skip the angst and take a nap. Something about having a birthday so close to New Year's creates a  double whammy of existential pondering, but again, I only have so much energy for that kind of mental flogging.

I've postponed having a birthday party, again-when you have an AAC, why bother planning a celebration with food you can't eat, drinks you can't drink, and activities you don't have the energy for? It seems like adding insult to injury. I keep promising myself that when I feel better, I am going to celebrate the hell out of these two birthdays, but I would settle for a smaller affair where I just didn't feel like crap.

Speaking of feeling like crap, I am gearing myself up for the super fun time that is colonoscopy prep (I told you there was extreme sexiness ahead!). This is not my first rodeo, so to speak, but it is my first time using the pill prep (32 pills! yikes). While I'm SO FREAKING GLAD that I don't have to drink a gallon or two of hurl inducing salty lemon lime colon explosion juice, I am always wary of trying something new. My doctor will also be meeting my colon in person for the first time, and I have to say I'm feeling a little awkward about the whole thing. In the past, my colonoscopies were performed by a specialist I didn't really see clinically; I feel like I spend a lot of time with this current doctor, and now all mystery will be removed from our relationship. I know this is a stupid thing to worry about, but when you're constantly sobbing in front of your doctor and discussing sexy topics like malabsorbtion, painful gas, and the quality/quantity of your bowel movements, it's nice to think you have a little dignity left. Then again, if you spend the 18 hours before the procedure having explosive diarrhea like I did last year, you would pretty much let the mailman preform the exam if it meant getting hooked up to some fluids and getting a little sedation. So there's that.

After this procedure, I will have to make some treatment decisions, something I've alluded to in previous posts. I've been delaying it, and delaying it, and it's finally time to nut up (such a gross expression, but it makes me laugh every time) and take a long, hard look at my life and decide if I can tolerate how things are or if I am willing to add more medications to the pile for a shot at better quality of life.

I talked about finding a motto for 2013, and while I didn't settle on one, I've been thinking a lot about something my yoga teacher said a few classes ago. My leg was splayed to the side in some sort of super sexy deep groin stretch. Everyone else in class was groaning, and I felt like I could release my leg all the way to the floor, but I didn't because I was worried that it might hurt and no one else was doing it. My teacher walked over, grabbed my heel and repositioned my leg, stretching me farther than I thought I could go. "How does that feel? Is it ok?" I thought about it, and there was no pain, no stress. "Yeah, actually." As she moved to the next student, she replied, "Good. Never settle for less when you can do more."

That stuck in my mind. When it comes to my Crohn's, am I setting for less, or just settling in general (that last sentence felt very Carrie Bradshaw-esque. Like if she were writing about Crohn's, she would say that, and then go cheat on/with Mr. Big and cry about it over appletinis in between bathroom trips)? I've felt like crap for the last few days-a combination of eating like crap (it was Christmas! and then my birthday! and there were treats EVERYWHERE), sleeping too much, and going off my exercise schedule. My stomach is hard and bloated. I'm in pain, and my AAC is not pleased. I haven't really left the house in two days. Is that what I want the next week, the next month, or the next year to look like?  

I don't have answers to all my questions, and I find myself, yet again, waiting and dwelling in uncertainty. All that aside, I made it through a year with Crohn's. I should focus on that. I made a full lap around the sun, and I have some momentum as I start my next turn.

Post #79: Thanksgiving (blogging) leftovers

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

(yeah, about that....)

 

Haha, turkey Fonz. Heyyyyyy.

Awww, sorry neglected blog. I was a little ragey on Wednesday, and then Thanksgiving happened, so now here we are.

 

I cooked a lot of delicious things for Thanksgiving, and then I ate them. That right there is progress, my friends. I started tapering off my steroids this week (sigh), and I was concerned about indulging on Thanksgiving, but I decided I wanted to be a normal person for the day and I ate what I wanted. Today, I was about as sick as I expected, and took a looooooong nap. I'll take it easy for the next couple days, but it was exciting to eat pie. Totally worth it.

 

Now! There are an assload of prompts to catch up with, but I think it counts as sticking with the whole monthly blogging thing if I do a 4-in-1 post, no?

 

Les Prompts:

 

1.) Write about alternative treatments/regiments/medicine. What do you support? What is crazy?

2.) Create a new technology related to health

3.) Write about change

4.) What's something your doctor taught you, or you taught your doctor?

 

LET'S DO THIS.

 

1.) Ok prompt, let's chat. If you call something an "alternative" treatment and then ask what might be "crazy" about it, you're setting up a dichotomy between Naturopathy and Western Medicine that I don't enjoy. Honestly, there are more CRAZY side effects from the prescription drugs I take than from the vitamins and shizz my naturopath gives me. Nothing "alternative" has ever made my hair fall out. I'm just saying.

 

Now, there are some admittedly out there treatments for Crohn's that could be described as alternative-parasitic worms, anyone?-but they're also being studied with increasing frequency by the mainstream scientific community. Conversely, Western Medicine, the non "crazy" one, is doing fecal transplants-let that sink in for a minute-to combat conditions like C. Diff. So, worms or donor poo? I think they might be tied in the wild and wacky "alternative" column.

 

I support care that treats disease and optimizes health with the fewest toxic side effects. I'm not going to make a sweeping generalization about Crohn's patients, but in my case I need mainstream drugs to control my symptoms, and I add on supplements suggested by both my gastro and naturopath (as in, they both tell me to take the same thing. B-12, etc.). 

 

I would also like to note that YEARS before I was diagnosed with Crohn's, a naturopath looked at my blood work and announced, "You have a chronic inflammatory disease that is causing you to continuously lose small amounts of blood. You need to go see a specialist." My primary care, and my gastros for that matter, had all looked at this same lab results, but since the values weren't marked in red, they assured me that everything was in the "normal" range and said that they didn't see evidence of a specific problem. I think the naturopath was able to draw conclusions (the correct conclusion, as it turned out) from the exact same blood work because she looks at the patient's total health, through a holistic AND scientific framework. Did she tell me I had Crohn's? No. Did she listen to my story, consider it carefully, and discover a pattern the other doctors either dismissed or missed? Yup.

 

Bottom line: there are benefits to both traditions, and it isn't fair to write off one as being wacky or "crazy" without trying it out first.

 

 2.) If I were to create a new technology related to Crohn's, I would invent a toilet paper that turned a color if it detected trace amounts of blood. This would be useful, because sometimes you can't really tell (I mean, sometimes you can, ahh). It's important information to know, and the tests currently available to check for it are gross. Ok let's be one with this one.

 

3.) Change......I'm not so good with change. This is a whole post (hell, a whole blog)-not something I can really discuss in a few sentences. Suffice it to say, as I approach my 1 year diagnosis anniversary, it's been on my mind a lot: how much things have changed, how they might continue to change....

 

4.)  Which doctor, prompt? I'll break it down:

 

Current doctor:

-How to be a (better) educated consumer of health information and how not to psych myself out with information overload.

 

Past doctors:

-You know your body best, and it serves no one if you don't share this knowledge.

-Not all doctors have to be your BFF, but if they are disinterested or dismissive they are not going to be the best caretaker of your health. Keep looking until you find someone you can work WITH.

-Write down your questions, because some people (*raising hand*) get flustered/emotional/forgetful during doctor's appointments.

-If you want something, ask for it (and keep asking for it).

-Ultimately, you are in charge of the details. Don't expect your doctor to remember/keep track of them all.

 

Ok! That's enough. There is about a cup of stuffing left, and I need to go take care of that, ha. I hope everyone had a great Thanksgiving and spent quality time with friends, family, and awesome pie.

Post #71: Honesty is the (potentially grossest) policy

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM


Jazz hands!!

Prompt: Write about something taboo

 

Hey prompt: news flash! Pretty much everything I write about on this site, especially the bodily fluids portion of the Crohn's talk, could be considered taboo. Gas, diarrhea, colon explosions, and flatulence are not exactly cocktail party friendly topics of conversation.

 

I think the term "taboo" can be conflated with a number of other descriptors: uncomfortable, difficult, controversial, overly emotional, forbidden, disgusting. I think it's the first synonym-uncomfortable-that best describes the "taboo" nature of all of my Crohn's talk. What's been interesting for me, as I'm pretty open about describing my symptoms with their actual medical designations (i.e. saying diarrhea instead of "tummy troubles" ugh), is that people tend to respond in kind. They'll bring up their hysterectomies. They'll talk to me about their hemorrhoids, and bemoan the fact that the generic store brand of Preparation-H just ISN'T THE SAME.

 

At first, I was more circumspect, not wanting to cause anyone to be uncomfortable with discussions of my bowel habits, but to my surprise I was underestimating the over sharing threshold of my friends and family members. Granted, I'm not telling the barista at Starbucks about my morning cramps, but I also try not to shy away from being honest about what is happening to me. Look, there's a time and place for honesty about my AAC, and it's usually pretty obvious where the line should be drawn. General friends, acquaintances, and neighbors are not usually treated to a full rundown of my symptoms-that would probably make me as uncomfortable as it would make them. But if someone close to me asks the question "How are you feeling?" and I think they actually want to know, I'll be honest.

 

A lot of these prompts have really been coded questions about disclosure-who do you share with? How much do you share? When do you share it? As with anything else, I look for clues in my audience. It's not my goal to make anyone feel discomfort. But I think it's important to note that at least in my experience, my honesty has been rewarded in kind. I feel that my friends and family members are more likely to tell me things, potentially personal things, about their health. Keeping in mind that this is a group of people who have never shied away from bathroom talk, I still think that some kind of embarrassment barrier has been removed. That is great. If my AAC talk initiated any kind of de-stigmatizing effect in terms of talking about growths, lumps, bumps, hemorrhoids, or stomach concerns, all the better.

 

So if you come over for Thanksgiving, I won't bring up my AAC unless you ask. But if you ask how it's doing, be prepared, because I'll tell you.

Post #56: Where I make out with some broccoli

Hey stud.

Oh, couch. Oh, daytime TV. Oh, low residue foods.

Luckily, the weather here has turned fall-ish, which makes hibernation more palatable. There is something uniquely depressing about crawling under the covers in the afternoon of a gorgeously sunny day.

This month all of the magazines are packed with Thanksgiving recipes, and I don't kid myself that I'll be able to tolerate most of them-I scoff at you cornbread stuffing! I laugh in your face, pecan pie! Last Thanksgiving I stuck to turkey and (plain) mashed potatoes-it's unfortunate that one of the best eating holidays has become an anxiety-riddled exercise in restraint. I love Thanksgiving foods-buttery, salty stuffing, sweet potatoes with a pecan crumble topping, dinner rolls, gravy-and pie, oh, the pie. I am really good at making pies. I know how to make a crust that is buttery and flaky, but still crisp on the bottom. I how to coat the top of a double crust pie with apricot jam to make it look like it came from a fancy bakery, or a magazine photo shoot. I know how to make a chocolate Bourbon pecan pie that is kind of shocking in its excess.

But of all the recipes flaunted in these magazines and floating through my memory, one-a raw brussel sprout salad with red onions, oranges, and toasted nuts, makes me want to rip out the page and chew on the paper (can't though-too much fiber). I crave salads, but I don't crave the inevitable pain and discomfort they will cause. If you had told me a year ago that the food I most desire involves brussel sprouts (and raw brussel sprouts!) I would have laughed in your face, and then eaten another slice of pie.

I think what I really crave is textural difference. Most of the food I eat now is not crisp. It has no bite. Before all this, when I was feeling well, it's not like I always ate particularly healthfully, but I did go through phases where I "ate the rainbow" (and I mean produce, not skittles). I used to be the high fiber queen. I used to eat swiss chard and lentils and roasted butternut squash. I ate big salads and raw vegetables and spinach. I mean, I also ate chocolate and ice cream and feta, but we're focusing on healthy shit now.

I can't eat those things right now. Maybe, in the future, I'll get to a place where I can without fearing pain or a colon explosion. As I chill on the couch, and watch the food commercials, it's not the quarter pounders, french fries, chicken sandwiches, cupcakes or cookies that make me drool-it's the Mexican food, with beans (beans! I remember beans!) and cheese. When I flip through these magazines, I'm not interested in the turkey, particularly, but the veggie sides.

I still haven't been able to find a happy medium between what my head wants and what my stomach can tolerate. As a result, I tend to eat the same things over and over and over, because they are "safe" and easy. I don't think I'm doing a very good job of nourishing my body. My focus has shifted solely to symptom avoidance and away from nutrition.

Before Thanksgiving, this is something I need to work on, because on that day I am eating real food. Maybe if I look at incorporating some more nutritious foods into my diet as a kind of training regimen, it will seem less daunting. Some people train for 5k runs-I would like to train my colon to accept new and different food friends. It would also be nice to not feel the need to muzzle myself in the produce section.