Post #117: I could medal in this kind of running (or at least place)

Different kind of running.....
Confidential to the lady in the grey spandex-you might want to invest in some different pants because I CAN SEE YOUR REPRODUCTIVE ORGANS geeze. 

Hello again blog! Welcome to 2014! Happy New Year to everyone who reads this blog and their colons/various digestive apparatuses. 

I could go in a lot of different directions in this post; how it's my two year diagnosis anniversary; how it's been a full year on my scary injectible medicine; how various colon attacks ruined both Thanksgiving AND my birthday dinner. 

However, this is a blog post about how people don't know shit about Crohn's (see what I did there? eh? eh?). 

This week I volunteered to help cook a meal for an area non-profit, and I ran into a family friend who I hadn't seen in a decade or so. She and her family were a definite fixture of my childhood; her daughter and I got into all kinds of mischief at various holiday dinners, and amused each other while the adults were being boring by sneaking away to the basement and pretending we knew how to play pool (I still don't). 

I was more than happy to see her, and we shared cell phone pics of our family members while dressed in ugly borrowed aprons, surrounded by huge vats of boiling water. Then came the inevitable question: what have you been up to? 

I kind of came to the decision that I would not lie about my current situation with people close to me, and since this woman had known me since birth I didn't feel the need to rattle off the jobs/hobbies/volunteer work I was into two years ago, pre-Crohn's. I told her I had been diagnosed with Crohn's and I wasn't working that much. 

Family friend (FF): Crohn's? What's that? 
Me: Oh, it's a disease of the digestive system. (blank stare) An inflammatory bowel disease? 
FF: Oooooooh ok. So, you get the runs a lot? 

Let's pause. 

OH HOW I HATE THAT PHRASE. Having "the runs" sounds kind of comical; I picture a comedian with their knees fixed together, kind of crab walking heroically toward the bathroom. Subtext: they probably won't make it, and that's funny! It's funny to lose control of your bodily functions in public! There is a cinematic tradition of using poop as a comedy prop, whether someone gets turned upside down in a port-o-potty (see: Jackass, the movie), clogs the toilet of a potential date (see: Along Came Polly, a thousand others), or just completely loses control of their bowels all together (see: Bridesmaids). In the last two examples, the characters have "the runs" due to food poisoning. They're sick, but it's still funny when they humiliate themselves. I guess I never appreciated that distinction before I got to deal with an AAC on a full time basis; I certainly laughed along with everyone else in the movie theater, but now it seems like kind of a cheap laugh, and one that hits a littttttle to close to home. 

Beyond any comedic connotations, "the runs" is just a coarse phrase. It's one of those cases where the word that describes the act is equally as disgusting or off-putting. Maybe it's because I use the word so much (to my friends, family, physicians, mailman....) but the word diarrhea doesn't gross me out the way "the runs" or (even worse!) "the squirts" do. At least "diarrhea" is somewhat respectable, and compared to the other terms, it's downright dignified. And when it comes down to it, I think that's what pisses me off the most: giving what to me (and a lot of other people) is a painful, unpleasant, occasionally debilitating condition a nickname is not respectful. It makes light of a situation that may be funny in the movies, but isn't funny in my real life. 

Back to the conversation: 

Me: Yeah sometimes. That's a part of it. 
FF: Well, that's too bad. 
Me (not really wanting to continue the conversation): Yup. 

Argh. Part of me wanted to justify just how much more Crohn's is than just a bout of diarrhea now and then: but wait! Don't you want to hear about the daytime pain? The night time pain? The endless doctor's appointments? The invasive tests? The dehydration? The malnutrition? The side effects from the meds? The sore joints? The night sweats? The hair loss!? I CAN TELL YOU ALL THE WAYS THIS DISEASE SUCKS!

But it wasn't the time or place, and I'm not the official ambassador for IBD. It's just frustrating to have someone reduce your experience to a piece of slang that doesn't begin to encompass the day to day struggles of Crohn's. Today, for instance, I ate peas for the first time in like 6 months and worried about that and had a lot of bowel movements and now I have a pain in my right side and I'm tired. And this was a good day! I ate out at a restaurant and ran errands and went shopping, all while keeping in mind where the nearest bathroom might be located. 

The last time I ate out and went shopping, a week ago, I was in the middle of Crate and Barrel when I felt that special feeling (cold sweat, cramps, pain) and knew I had about 2.5 minutes to make it to a bathroom or poop on the showroom floor. I did indeed have "the runs" and I did have to actually run to a bathroom and no, it wasn't funny, even a little bit. 

I know there is no succinct way to express this reality to people. I get it. 

If nothing else, what I take from this conversation is the desire to be more open and receptive when other people try to tell me things about their lives. To not assume I know all the answers, and to try not to belittle or reduce their experiences in any way. I'll try not to be as ass about whatever they disclose, and I'll let them tell me what it's like. 

Which I would have done with this family friend, if I thought she really wanted to know. 

Post #108: The Spinach Sprint

Lettuce: nature's leafy green ex lax. 

Hello neglected blog! I have been on vacation-relaxing, reading trashy novels, eating PRODUCE. 

WHAT!? I know.

Ever since I have started this new diet, I can now digest "skins" and seeds and a small amount of roughage. Green beans and tomatoes and unpeeled cucumbers, oh my! Still working on nuts, but PROGRESS!

One of the things I used to enjoy most about vacation was the unfettered access to delicious, fattening foods. Vacation was a time to eat out all the time, and if you did go grocery shopping, to buy sugary cereal. This was a huge thing in my household, which was firmly entrenched in the Grape nuts-Cheerios-sticks and twigs camp of high fiber cereals. But once a year-during vacation-my sibling and I were allowed to each pick out one box of nutritionally worthless, chemically altered, neon-colored, sugar saturated goodness. Cereals that had CHARACTERS (I salute you Cap'n!) and that were advertised on TV. Cereals that were so wrong, they were so right. 

I remember one year buying a box of cereal that was made up of tiny chocolate chip cookies. Cookie cereal! Mind. Blown. 

Vacation was different this year, and frankly eating out hasn't been the same since my colon became committedly angry. Knowing that I would have limited control over food options-at least for the first part of the trip-added a layer of anxiety to what should have been a relaxing time. 

At first, everything went swimmingly. Servers were accommodating about my weird menu requests and substitutions; basically, any restaurant anywhere will serve you grilled chicken breasts and sliced tomatoes. I was doing the tourist thing, I was eating out for three meals a day, and I felt OK. So I got a little cocky. Can you see where this is going? Let me take you there!

After a few days of being exceedingly careful and cautious, I was feeling a little more mellow about the eating out thing. That night the server placed my customary chicken on a nice bed of mixed greens. I felt empowered. Puny lettuce leaves!? You are no match for my relatively less angry colon! I miss salad-I love salad! I had three bites of salad and felt fine. A little smug, even. 

The next morning, I was calmly eating eggs and toast when my colon howled in protest. Without a word to my dining companion, I quick marched to the bathroom and bolted the door closed. The bathroom was between the kitchen and dining room, and there were people constantly walking past the door. 

** Warning! Here's where a little TMI happens. And then will probably happen some more. **

There is a special kind of desperation that comes with having violent bowel movements in a public place. Thankfully, this was a one room bathroom-no stalls-but people were constantly outside the door. I couldn't tell if they were waiting or going back and forth to the dining room, but it felt public, and I felt rushed and embarrassed and sick. Three times I thought I was done, had washed up and had a hand on the door knob-when I had to start the process all over again. It was incredibly frustrating.  For those of you with Crohn's, or angry colons of any variety, you know these things sometimes come in waves. 

A while later, I walked out and felt my cheeks burn as I took my seat, wondering if anyone else in the cafe had been waiting to use the bathroom, or had noticed I had been gone from the table for the past 10 minutes. Mentally shaking myself off, I prepared to continue my day. We headed off to the local giant bookstore, which is really like a literary mini-mall. I could spend hours there, lost in the stacks, inhaling the mingled odors of books old and new. I had just started browsing-I was in the C's-when I started to sweat. 

I ignored it-surely I had take care of all this at the restaurant? When I felt the alarms go off down under. Apologizing profusely, I broke up a conversation a clerk was having with another customer and asked for directions to the bathroom: down the hall, up two flights of stairs, and then down another hall. 

PANIC. 

As I raced up the stairs, I thought I might lose control before I hit the stall. When things are THAT URGENT, the last thing you want to do is JOSTLE THE SITUATION, or hike up a few stairways, flinging aside small children and loitering tourists. I was also carrying a stack of books, which I temporarily shelved on a cart, and made it just in time. To a crowded public restroom full of mothers and children. 

Sigh. 

At that point, I was just happy not to be pooping behind a bookshelf. I was feeling a little sorry for myself, thinking about the what ifs-what if there was a line for the bathroom? What if I didn't make it in time?

But I did make it in time-two more times to that particular bathroom alone. 

Feeling depleted and exhausted, I still managed to find a few books, and then downed some Imodium to prepare myself for the THREE HOUR DRIVE to our next destination. 

I'm not sure what I'm writing about all of this here-it certainly wasn't my finest hour, or my new diet's, or even my colon's. But sometimes, this is what it's like. Sometimes you get lucky and don't embarrass yourself (too much) in public. 

For me, this is just an example of how things can go from good to bad in an hour, or a day. How no amount of preceding health can negate the possibility of sudden sickness. I gambled with the three bites of salad (and I'm not exaggerating-literally, three bites) and I paid the price, but sometimes the reasons for the colonic onslaught (ha, that sounds like a metal band) are not so clear. 

You can do everything "right" and still find yourself in a desperate race for the toilet. 

All in all, I had two bad days on vacation. I brought my injectible medication and stashed it in a  hotel minibar. I made it through. It's easy to forget that when you focus on the desperate moments, when you're whimpering in a deli bathroom and willing your body to just let you be normal for a while.

I made it through, and I had a good vacation. And I can go back to that bookstore next year with my head held high, knowing I didn't leave a little present behind the stacks. 

Post #87: #Escapethestupidity

So....I was doing my usual perusal of IBD blogs, when I came across the CCFA's (that's Crohn's and Colitis Foundation of America, to you people with functional colons) latest add campaign, winningly titled "Escape the Stall." Here are some of the images from the campaign:

 

Wow! Don't these images just scream DIGNITY and RESPECT?

No. They are actually horribly, horribly offensive and insensitive. Huzzah, CCFA! I can't wait for these ads to become PSAs, so more people can continue to NOT understand this disease!

Look, I read the article in the NYT; I understand the reasoning behind the ads. I think the push to spread awareness about IBD is great, but I cannot think of a more poorly executed campaign to accomplish this goal. When I first saw these ads, I honestly thought they were some sort of tasteless parody. Alas.

Despite what you may understand from the ads (or from this blog!), Crohn's is not just a poop disease. It's not all about spending time in the bathroom, although that is certainly a reality for people with IBD. It's about fatigue, pain, malabsorbtion, surgery, increased risk of cancer, inflammation, blood tests, doctor's appointments, scary drugs, missed work, missed life experiences....it's a multifaceted physical, mental, and emotional clusterfuck of symptoms and experiences. Take a look at these ads: do they convey any of the complexity of this disease?

Some of the ads contain a small, written post script that address some of these issues, but the visual impact of a person stuck in the bathroom-and the name of the campaign, "Escape the Stall"-overshadow these nuances. This is about poop. Embarrassing, embarrassing poop. Shameful poop. If the goal was to bring awareness to IBD, to take it "out of the shadows"-it has only succeeded in pushing the sufferers back into the stall from which they should, as the ad encourages, seek to escape.

If you knew nothing at all about Crohn's, these ads would lead you to believe it is a disease relegated to the bathroom, a dirty place for a dirty disease. Worse, these IBD sufferers are in public bathrooms, inflicting their dirty disease into a public space. To suggest through this imagery that Crohn's is a dirty, embarrassing, shameful thing is inexcusable. These images do not encourage hope; they perpetuate hopelessness.

I can appreciate that creating an ad campaign around IBD would be difficult. It's a complicated, ugly disease. But then again, so is breast cancer, diabetes, colon cancer, or the myriad other diseases that have a presence in drug commercials, public service announcements, or magazine ads. And yet-those diseases are treated with a respect that is entirely absent from the CCFA campaign.

The "Escape the Stall" images seem to be attempting a light-hearted tone, a kind of "reel them in with humor" approach. Hey asshole marketing team that developed these ads: there is NOTHING FUNNY ABOUT CROHN'S. You know what I think of when I see the bride stuck in the bathroom? That scene from "Bridesmaids" where the bride gets food poisoning and shits herself. Santa? I think that dude ate too many cookies. The girl in the high heels? I think she drank too much and is in the toilet to upchuck her cosmos. NONE OF THESE THINGS ARE RELATED TO IBD.

The CCFA is an advocacy group. It is their job to educate people about IBD. They have utterly failed and managed to insult their constituents in the process.

We deserve better.

Post #73: We are better than this

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

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

 

I AM A DELICATE SPECIMEN OF WOMANHOOD WHO NEVER POOPS. Haha, just kidding.

 

Prompt: Why healthcare companies (or healthcare professionals) should use social media

 

First: the prompt. I think healthcare professionals can use social media in a positive way.

It's a fine line for a healthcare professional to walk, in terms of maintaining a professional distance and offering potentially useful information. I don't want to be friends with my doctor on Facebook (does the man who performs my colonoscopies really need to know any OTHER personal tidbits? He does not), but I do check in on another doctor's twitter feed because I think he offers interesting and pertinent information. I think social media, in terms of Crohn's patient/Crohn's professional, should be used in this model: short bursts of information on current drug trials; tweets from medical conventions; links to interesting articles. It's a way to get current information from a source who is well versed in the subject and exposed to current research and scholarly discussion. Should doctors be dispensing medical advice online? Probably not. A twitter feed will never replace a physical. But it can be a way to inform, empower, and educate patients.

 

What I really want to talk about is this article. It has me all hopped up and rant-y. The author is discussing pooping at work (zzzzz), but she includes a few choice quotes about discovering how "taboo" a topic poop is while working in her college's theatre department:

 

"Because to be a woman and to talk about poop -- about anyone’s, but especially your own -- that’s subversive. It’s weird. It’s immature. It’s inappropriate. Those same senior girls in the theatre shop taught me a lot about being a modern feminist, sometimes engaging in serious debates about what being female even means, and conversations about sex and sexuality were explicit, positive, and frank.

 

Yet it was talking about shitting that had people in the costume shop up in arms. “You guys stop -- that’s so gross,” said a male coworker."

 

And later:

 

"As human beings, there are facets of our humanity that link us. I think it’s important, living in an age like ours that preaches connectivity but breeds isolation, that we remember these links whenever we can. We all poop, male or female, and perpetuating the idea that women don’t is hurtful to us, not just as a gender but as a people. I think about it the workplace most of all, especially when I read articles on the glass ceiling.

 

Its existence is one of those pernicious realities that rears up and hits me in the face every time. When I sit there worrying about equality and about the sort of world I might one day be bringing daughters into, it’s something I worry about explaining. “You’ll never make as much money as your brother, and a lot of people will think it’s weird or gross if you have to poop at work.”

 

The point of the article is that yes, everybody poops, and yes, woman should feel free to poop in the workplace, and that as women we are still sometimes ashamed of our bodily functions, as if they make us vulnerable or weak.

 

WTF.

 

I agree with the point of the article; what infuriates me is the fact that someone felt the need to explicitly state the obvious-that women do, in fact, eliminate waste JUST LIKE MEN-in response to cultural stereotypes about women and bodily functions. Also annoying? The author seems to want commendation for her candor. Look, lady, I'm glad you're talking about poop, I really am. But I'm not going to give you a medal for writing about such a big scary TABOO subject when in doing so you are unintentionally reinforcing the same tired stereotypes you hope to dispel.

 

I can't believe this is a topic that is still worthy of discussion.

 

I feel like we can't be normal about poop. I'm not saying this as a Crohn's patient, just as a lady about town. Women are herded into two camps; we can either avoid the topic like the plague and get the vapors when it is discussed, or cheerfully discuss our bowel movements in explicit detail. There is no middle ground-we can't simply be normal about our poop. This binary divide, as presented in the article, posits that to avoid discussion is repression; to embrace it, feminism. I don't buy it.

 

Look, I'm probably not the best example of the middle ground: you are, after all, reading this rant on a blog where I talk frankly about my Crohn's disease, which by its very nature necessitates a lot of conversation about poop. But I don't think that I am a bad feminist, or a bad representative for this disease, if I don't loudly and proudly detail my bowel habits so other woman can feel less shame about their own bodies.

 

There are, as the article states, many things that connect us as human beings. But let's get real: talking about poop is not necessarily an indication of connectivity of gender equality. It's not the last frontier of conversational acceptability. Yes, we all poop, some of us more than others (hi!). But knowing that doesn't make me feel more equal, or connected to, the guy sitting next to me at the DMV. Talking about it doesn't make me brave. And focusing on it does not tear down the walls of shame; it only reinforces the idea that there is still a wall that needs toppling instead of looking beyond the wall for topics more worthy of discussion. 

#17: In which I waste a lot of water

For those times when you need extra special freshness after you poop in a stranger's toilet.

So, I was house sitting over the weekend, and in addition to picking up a cold/flu deal, I also got to unleash my AAC onto a new and different septic system! I know there are some people who are afraid of public toilets, who bust out the "squat" when they have to pee in the mall, but I've never been one of those types. Which is surprising, considering my germ issues (I Lysol the TV remote. I also use Lysol as a verb), but I've never met a toilet that was too foul for me to befoul, so to speak. Especially with Crohn's/IBS, you can't be too choosy about the caliber of any available loo.

So here I was, chilling at a new house, and the complete alteration of my careful schedule made my AAC especially pissy. During the taper, I've been trying to eat at the same times, and eat a lot of the same foods, and eat more healthfully, and stay hydrated, and generally coddle my digestive business. Unfortunately, you can't transplant your entire kitchen or anal-retentive routine into someone elses house. There will be new foods, and different eating times, and a weird bed, and the stress of listening to your loud neighbors party it up until 5am. Thus: same colon explosion, new toliet.

One of my greatest fears is clogging a toilet at someone else's house. It is disastrous for a number of reasons, besides being gross and embarrassing. There is a certain judgement implicit in having to confront someones waste. I once had a friend clog my toilet, and a part of me was definitely judgemental, thinking, what is wrong with this person? What kind of man beast unloads such an unholy amount of poop at one time? As I handed over the plunger, avoiding eye contact, I felt that an invisible line had been crossed. Some things should be done in secret, and never acknowledged. A little (ok, a lot) of the mystery had been erased from the friendship.

Now, this was pre-AAC, and I've since become pretty freaking open and honest about my bowel movements. I like to share. However, I recognize that for most people, like it used to be for me, it's a topic best left to discuss with immediate family members and medical personnel.

For these reasons, at a stranger's house I generally do an exploratory flush to determine the strength of their plumbing and its capability to handle my output. This house had a WEAK FLOW, which made me nervous.

Thus, when the time came, I think I flushed about 10 times, each time waiting for the comforting gurgle that signaled a successful transaction. When I was done, I felt like I had somehow sullied the bathroom, that my presence and my AAC had made the place soiled. I was so, so careful, and yet I still felt dirty.

I know I can't help the way my colon acts. There is nothing neat, quiet, or dainty about this disease, and I have to alter the way I think about being a guest, or using public bathrooms. And if I have to flush 10 times, or 50,  it will still be preferable to doing the walk of shame to ask for a plunger.