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 #86: A day in the life (of an AAC)

After an exhaustive search, it was determined that I have no candy up my butt.

Oh, colonoscopies. First thing's first-everything is pretty much the same, which is still not normal, but (pending the biopsy results) also not worse. Hooray!? Now, let's make a pro/con list of this most recent procedure:

Pro: The morning of, a friend sent me the following encouragement:

"For tomorrow, because I have no idea what to say before someone goes in for a roto-rooting: [pounds fist against chest then raises it in salute]."

AWESOME.

Con: Prep. Even though the pill prep was less vomit inducing than drinking the "jug of fun" (as a pharmacist called it the other day), it still required swallowing 32 giant salty horse pills and then, you know, cleaning house. And by house I mean colon. And by cleaning....well, you get the picture.  

Pro: It's over!

Con: For whatever reason, they wheeled me into the treatment room 45 minutes early and left me there, giving me ample time to stare at the apparatus that would soon be introduced to my AAC. It is really, really long, and the controls look like a video game joystick. Also, I couldn't really explore the room (extra blankets and emesis basins and extra lube, oh my!) because my "tether" (whatever you call the tube connecting me to the IV) was too short. Not that I tried....

Pro: The nurses there are SO FREAKING NICE. The nurse in the procedure room was joking that I had really come in for a day at the spa, and when I left I would have a spray tan. My doctor joined in: "let me go get the cucumber slices!" I'm not sure what prompted this, or why everyone thought it was funny at the time, but I appreciated the attempt to bust out a little humor pre-butt scope.

AMPs for the win!

Con: This is kind of a big one. For a number of reasons, I wasn't able to be fully sedated for the procedure. I was high, sure, but also aware that there was a pokey foreign object in my colon. I kind of floated in and out, but I remember being uncomfortable and kind of panicked about being awake, but also too drugged to really panic, if that makes sense.
In a last ditch effort, they gave me some benadryl, but the problem wasn't a mosquito bite, but more a giant flexible hose in my AAC. At one point, I must have closed my eyes, and I heard my doctor say, "Oh good, she's finally asleep" to which I replied, "NO ACTUALLY I'M STILL HERE."

Good times!

Pro: Even with the SURPRISE! discussed above, I am still not scared of having a colonoscopy. Nothing truly terrible happened, and I won't be developing a complex over this. The benefits far outweigh the downsides, and awake or not, I'll still have another when I need one.

So-colonoscopy? Check. Follow up appointment scheduled? Check. Back to eating delicious solid foods? Checkcheckcheck. Decision on whether to start the new scary medication? TBD.  

I feel like this was a hurdle (a hurdle I asked for, to be fair) that I had to clear to start off 2013. One way or another, that happened, so now it's on to the next.

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 #84: Brought to you by the letter B

Most. Depressing. Advertisement. Ever.

Can you imagine if Santa really did have Crohn's? He'd have to tow a port a potty behind the sleigh....although technically he would have access to all the bathrooms in the world. It seems especially cruel to leave milk and cookies for IBD Santa, when what he would really want is candy coated Imodium. If you're on the naughty list, maybe IBD Santa clogs your toilet! Or poops in your stocking! Ewww. Annnnnd, we're done.

Why is this post brought to you by the letter B, you ask? B stands for bloated, balding (one baldish spot up front, now covered by bangs but still freaking me out), bitterness, bitchiness, BIRTHDAYS, and bananas (bananas are easy on your stomach, FYI).

As you may have guessed, I'm steroid free, and my AAC is not loving it. Add to the mix a cold I picked up from some random lady who was hacking next to me during class at the gym, and a time of year that usually makes me introspective and moody, and whee! Welcome to the party.

It's pretty much my one year Crohn's anniversary (yeah! said no one). I'll have a colonoscopy early next month to see where things stand, but I pretty much know what my next step is going to be.

hahahahaha so true.

This year the prospect of planning a "fun" birthday is especially depressing. Last year, for my big milestone birthday, I was feeling like crap, and promised myself I'd plan mini-celebrations throughout the year to make up for the fact that I could barely drag myself out to lunch on the actual day. I thought I would be feeling better, and I looked forward to "getting back to normal." It's been a year now, and I still feel like crap (my stomach is very loudly agreeing with that last statement).

With the exception of a few good stretches brought about by my favorite little pink pills, I'm pretty much where I started. I've had more tests, I have more experience, but I don't have anything approaching a workable solution for the problem. This past year has been full of pain, frustration, fear, and uncertainty. It has also been filled with small wins, and some bigger ones, including the fact that I'm still standing despite all the shit that's been thrown my way in the past 12 months (I mean that metaphorically, there wasn't a roving band of monkeys throwing feces at me. Just to clarify). I'm here and I'm still hopeful. That in and of itself is something to celebrate with (dairy free, low fat) cake.

So I have a birthday coming up, and a colonoscopy, and the fresh slate of a new year (I wish it could be that easy-Crohn's was soooo 2012. Peace out IBD in 2013!). I don't know what's in store for tomorrow, let alone the next year, but I still find myself making plans, listing things I want to accomplish. I hope I will be able to cross some things off that list. I hope I will be able to have twice as many mini parties to make up for the past two years of shitty birthdays. I hope I will spend less time on the couch, bed, and toilet and more time out in the world. I hope-I guess that's the main thing. I still hope.

Post #83: My brows need IRON

dun dun DUN....(cue soap opera big secret reveal music)

I was watching this episode of Will and Grace a few days ago, and for some reason I can't remember Jack lost an eyebrow, was wearing an eye patch, and then had Grace draw on this stunningly natural sharpie version. Haha, oh Jack.

In related news, I went a litttttle overboard on the plucking (again). It's not as pathetic as last time-one eyebrow isn't cocked significantly higher than the last one-but they still look pretty anemic. I am putting myself on a strict no-plucking diet for the rest of the month, which is a shame because tweezing is my happy place.

Someone was telling me that when they were overwhelmed, they piled on the eyeliner-my eyebrows themselves are my stress barometer. And I'm feeling stressed out. Everything (knock on wood a few times) is holding relatively steady-I have one more week of steroids left, and then I will be totally off them. I exercise 5 days a week. I eat out. I'm finally taking my freaking vitamins. And yet, like the understated, elegant beauty that is Jack, I am giving a huge SUPER THIN EYEBROW RAISE to the whole situation.

I just feel edgy and....concerned. Wary. There is so much riding on this last bit of tapering, and then my body's reaction to just being on the one other drug. I find myself craving late night cookie binges and bad TV. I pulled my quilt out of the dryer today and wrapped it around myself and just stood still, in the middle of the kitchen, because I felt so happy and warm and safe. I crave comfort, and sometimes old habits are the most comfortable of all. Cue eyebrow tweezing, stress eating, magazine reading, and Internet shopping. Wheeeeee!

What is especially ironic is that at a time when I am worrying about the hair on my head, I gladly removed a lot of the hair above my eyes. Everyday my hair looks a little more deflated (to my eyes, anyway). It still comes out in the shower and when I comb my hands through my hair after. I keep waiting for the tipping point, the point at which my scalp becomes visible beneath my hair, or I develop a bald spot, or whole clumps start falling out. Part of me just wants to shave it off and be done with it, but that's not right.

So, I keep going. I keep doing what I'm doing until I have my colonoscopy, so I can make more informed decisions. I'll keep sweating with the oldies, and try to resist the siren call of the sugary treats in the freezer. I'll just keep waiting. I'm pretty good at waiting. I've had a lot of practice.

Post #82: We don't know what we don't know

Savasana

I've been doing yoga lately-once a week-and I find myself looking forward to it. I don't particularly enjoy the crowded, stuffy room, or the sweat that runs into my eyes, or the way my arms and legs shiver and shake when I hold a challenging pose. I do like the fact that just for an hour, I am totally focused on the things my body can do, and not the ways in which it malfunctions. At the end, as a reward, you get to do Savasana, or "corpse pose" (shudder). This is my favorite part. You're exhausted and sweaty, and completely inhabiting your body, such that you feel the heaviness of your limbs as they connect to the floor, notice the rise and fall of your chest, feel the tightness in your lower back release like air from a balloon. It is surrender.

 

At the end of the pose, which always comes too soon, the yoga teacher reads a kind of daily affirmation, with a quote and a takeaway message. I don't always remember them, but it always seems like they are applicable to my experience in some way. This could be the happy exercise endorphins, or the fact that I'm probably more receptive to this kind of stuff when I'm too tired to be snarky. We were doing a stretch and the teacher said we were basically wringing ourselves out, like a sponge. That's exactly what yoga is: as I twist and bend my body, all of the fear and negativity and worry are squeezed from my body. I never want to punch anyone after yoga.

 

All of this is a lengthy preamble to this quote I'm going to post below; you can find it (and the awesome music) here. It should come as no surprise, if you read yesterday's post, that I ate all the cookies. So many cookies. I stress ate before the Crohn's, so why should now be any different? I mentioned that I was frustrated with myself for perpetuating this cycle, of doing the "normal" things I did before and expecting-hoping for-different results. I'm frustrated again tonight (and nauseous!), and then I found this quote. It's exactly what I needed. Yoga AND an Internet affirmation? Today was a good day.

I will never be a brain surgeon, and I will never play the piano like Glenn Gould.

 

But what keeps me up late at night, and constantly gives me reason to fret, is this: I don’t know what I don’t know. There are universes of things out there — ideas, philosophies, songs, subtleties, facts, emotions — that exist but of which I am totally and thoroughly unaware. This makes me very uncomfortable. I find that the only way to find out the fuller extent of what I don’t know is for someone to tell me, teach me or show me, and then open my eyes to this bit of information, knowledge, or life experience that I, sadly, never before considered.

 

Afterward, I find something odd happens. I find what I have just learned is suddenly everywhere: on billboards or in the newspaper or SMACK: Right in front of me, and I can’t help but shake my head and speculate how and why I never saw or knew this particular thing before. And I begin to wonder if I could be any different, smarter, or more interesting had I discovered it when everyone else in the world found out about this particular obvious thing. I have been thinking a lot about these first discoveries and also those chance encounters: those elusive happenstances that often lead to defining moments in our lives.

 

[…]

 

I once read that the definition of insanity is doing the same thing over and over and expecting different results. I fundamentally disagree with this idea. I think that doing the same thing over and over and expecting different results is the definition of hope. We might keep making mistakes but the struggle gives us a sense of empathy and connectivity that we would not experience otherwise. I believe this empathy improves our ability to see the unseen and better know the unknown.

 

Lives are shaped by chance encounters and by discovering things that we don’t know that we don’t know. The arc of a life is a circuitous one. … In the grand scheme of things, everything we do is an experiment, the outcome of which is unknown.

 

You never know when a typical life will be anything but, and you won’t know if you are rewriting history, or rewriting the future, until the writing is complete.

This, just this, I am comfortable not knowing.

 

-Debbie Millman (previously) in Look Both Ways: Illustrated Essays on the Intersection of Life and Design

Post #81: The cookie conundrum

But also Crohn's, Cramps, and Constipation!

 

Yeah, no more enforced blogging! I have to say, that really sucked the fun right out of writing a Crohn's blog, ha.
 
Before I forget, it was great to see too IBD related articles on one of my favorite websites: read them here and here.
 
I'm watching Sandra Lee's Taverns, Lounges, and Clubs (TLC-get it?! get it??), otherwise known as the Sandra Lee alcohol appreciation hour. This chick loves her booze. You have to appreciate someone who managed to make drinking her JOB.
 
Back in AAC land, the tapering off steroids continues, as does the increase in symptoms. Shocking, I know, but I keep putting all of my hope in being able to maintain steroid-free remission without having to take new and scarier drugs. It's like watching the same movie over and over again and hoping for a different ending. Complicating the issue is the fact that I continue to eat as though I'm on a full dose of steroids. Smart! As I approach my one year diagnosis anniversary (for my one year anniversary, I'll be registered with Charmin-just kidding, I still HATE THOSE ADS), you'd think that some of the lessons learned in the preceding months would stick: fatigue is unpredictable. Decrease in steroids=increase in colon explosions. DAIRY IS NOT YOUR FRIEND.
 
I guess I'm a bad Crohn's student, because I keep having to take, and fail, these tests again and again. The desire for normalcy, represented nowhere more powerfully than on the plate, is constantly testing my resolve. For every time I avoid plunging my face into red velvet cake (yesterday afternoon) I go out and think that suddenly I can magically eat lettuce (yesterday night). I forget about all of the cramps and bloating (this morning) and really want a cookie (right now). It's a continual cycle of frustration and remorse.
 
Welcome to the cookie conundrum: the reason that eating is so fraught with fear and suspicion. If I do eat the cookie now, I will probably be sick tomorrow morning, thus interfering with Yoga, which is my favorite fitness center class of them all. If I'm extra sick in the morning, and still do yoga, I will have even less energy tomorrow afternoon, which means a longer nap and a disrupted sleep schedule. Riddle me this: how can you possibly plan two moves ahead when your colon could decide at any moment to throw a wrench in your plans? You can't.

You can't control variables like fatigue, and even if you only eat "safe" foods you still might end up feeling sick. One of the many annoying truths about Crohn's: a cookie is never just a cookie-but sometimes it is. I can plan five steps out to accommodate eating one of my favorite "normal" foods when I'm out with friends, and still wind up spending my morning in the bathroom. Conversely, I can think, screw it, eat two cupcakes, and lift weights with the ladies at 9am. You never know.
 
Basically, even if you make (smarter) choices that lesson the likelihood of symptoms, there is no fail safe diet, or ritual, or exercise or pill, that will prevent them all together (or at least, any that I have found). I'm still trying to wrap my head around that reality. I'm used to having a more logical relationship with food: eat well, feel well. Eat fried chicken, feel like crap. Eat chocolate, may as well have taken a laxative. A year into this Crohn's business and it's still hard to accept that these rules don't necessarily apply anymore. Sure, the fried chicken thing is still true, but a cookie didn't use to have the power to make/break my daily plans.

Maybe that should be a motto contender for this year:

It all starts with one cookie.
 
or:
 
C is for cookies, BUT COOKIES AREN'T FOR ME.
 
or:
 
JUST EAT THE DAMN COOKIE-you'll probably have diarrhea anyway.

or:

Take a bite of that cookie-do you feel lucky? WELL DO YOU?

 
I'll have to tinker with those.