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 #115: The princess and the (very many) peas

SO MUCH PEA. 

Hello neglected blog! I keep meaning to post, and then getting distracted, and then realizing it's been a month since I last posted. The reason I post at all, and the reason I'm going to try to post more frequently, is that it's helpful to work out what I'm feeling by writing about it-and it's been a long time since I've done that here. Things are a little backed up (cue constipation jokes!). So here goes....

I am now going to tell you a gross story to illustrate some gross realities in my life. 

**TMI warning**, and what not.

I once had a mole removed in the vicinity of my hipbone. It was a standard procedure, with ten little black stitches that look like the fur on a caterpillar's back. I did everything I was supposed to do, but when I went to get the stitches removed.....the wound had not closed. I remember the dermatologist saying, "huh"(add that to list of things you don't want to hear from your doctor). He put a butterfly bandage on, and some sort of sticky glue, and bandaged the whole thing up tightly. I was not to touch it, think about, or even glance in its direction for 72 hours, and then I was supposed to come back.

I'm pretty sure you can guess where this is going. That shit did not want to heal. 

He told me it would close in time, and to keep it dry and clean. I dutifully followed his directions, and it still would not close. It wasn't infected; it wasn't angry; it just wasn't closing. It was on a  part of the body that moves a lot, and even if you stay still most of the time, you're still going to have to get up and pee eventually.

It was during the summer, and I remember laying in the backyard with my pants pulled down on one side, sunning my sad wound in the hopes that the sun would make it shrivel up and close. I felt a malaise-there's no other word to describe it-a deep, unsettling unhappiness that pervaded and discolored everything. I was sick at the thought that I had to go about my daily life with THAT on my body. How could I enjoy the nice weather when THAT was still there? How could I pretend to be happy with THAT laying just beneath the surface of my clothes and a few strategic bandages?

That particular summer, that wound was my pea (see illustration above). Now, just so you don't think I'm being overly dramatic (never!), it wasn't like I had a sword wound on my side. I'm lucky it never got infected; and even though it left a gnarly scar (seriously, it's big), it did eventually close, but I will always remember that feeling-like a sickness of my very being-and how it trumped every other feeling, every other thought. It was like a stain I couldn't wash off. I think that was the first time I was able to articulate and understand how physical problems upset my emotional equilibrium to such an extent.

Side note: you know what finally fixed that problem? THE INTERNET. But that's an entirely different story. 

Now I find myself with a sore in a very Crohn's like place (TMI or not, that's all I'm saying). I'm doing the wound care thing again, and for the first few days I felt that same sickness, that visceral disgust, that soul-dampening weight of a painful, awkward, manifested bodily illness.

It's the pea beneath 100 mattresses, the sharp gravel stuck in your shoe, the mosquito bite that keeps you awake at night: the one niggling imperfection that prevents you from appreciating anything good or happy that is going on around you.

Maybe it's a character defect, but I've always been this way. Even with the Crohn's, there are things that just seem to automatically drag me down into sadness. These things tend to be the more outward/noticeable conditions; they happen, and suddenly I feel totally and completely defeated.

The sore is better; the wound on my hip did eventually close; but when it happens, when these injuries present themselves, I'm like a horse with blinders. In a world full of happiness and joy I plod forward, shoulders sloped, with a singular thought in my head: broken, broken, broken, broken.

And when I'm there, it's hard to see past that revulsion and sickness, to realize they are small (some might say, PEA LIKE) components of a much larger picture. Now, as I've done in the past, I get through it the only way I know how: by plodding forward, miserable and sad, waiting for the day I can venture out and feel normal once again.

This is all a roundabout way of explaining that I recently had some tests that showed things are going pretty well, in AAC land, and could not find an explanation for my current symptoms. To put it another way: the way things are now, the pain and discomfort and symptoms I experience, are my pea. They are still here after (or despite) treatment. They are there, providing me daily reminders that I have an occasionally (although it feels like mostly) dysfunctional digestive system, improved though it may be. 

I can't kick that particular piece of gravel out of my shoe; I can't shake the pea out from under all those mattresses. It is just what remains, and I don't want to live my life being disgusted and sickened and frustrated and held back by something I can't change. 

I've written before about how instead of New Year's resolutions I like to create New Year's mottos. So for 2014, I'm thinking it should be pea related. 

Something like: 

2014: EMBRACE THE PEA (hmmm, too R. Kelly-ish)

or: 2014: MAKE PEACE WITH THE PEA (better)

or: 2014: IT'S JUST A PEA GET OVER YOURSELF (why am I so mean?)

or: 2014: PEAS AND PERSPECTIVE (oooooh)

As with everything else in my life, it seems to be a work in progress. One thing is for certain: the pea is here, and I need to learn how to purposefully incorporate it into my life.

Post #114: In the business

Welcome to my office. 

Yesterday some good friends who live out of town came to visit. Sometimes, with old friends, I'll get portals into what my life was like pre-AAC-little windows into who I was and how I was before my life was overtaken by Crohn's. That last part sounds melodramatic, and it is, but it's also pretty accurate. 

My friends let themselves into my house and kicked off their shoes, raiding the fridge before grabbing my blanket and making themselves comfortable next to me on the couch. My cupboards are a showcase of beige gluten free simulations of real food, but I managed to find some ancient girl scout cookies in the freezer, which seemed to suffice and prevented me from feeling like a total failure in the hostess department. 

As we sat around and caught up, a weight fell from my shoulders, and for one brief moment I got a glimpse into what I had before, and what I'm missing now. Easy camaraderie with people who knew me before my AAC came out in full force, and know that I'm not really "like this." People who knew me from a time when I was more social and adventurous and funnier and happier. I was never much of a risk taker, never the life of the party-but I was not what I am now. I feel like I need to be reminded of that, by seeing that old version of myself reflected in the memories of some of the people I know best. It's a kind of gift, to have that easy report, with people who know that I am more than my symptoms and disease and don't treat me differently than they did a decade ago. 

I was catching them up on my latest weird medical testing, and one of my friends, who works in a doctor's office, started discussing a bunch of diagnostic procedures. She was unsure of the difference between two procedures (that I've had), and as I was explaining the differences she laughed and said, "I knew you'd know! You are in the business, after all."

That one little comment, offered without malice or judgement, jolted me out of the portal and yanked me back to reality. 

I realized that my AAC, my illness, was now an established part of our shared timeline. It was, in their minds, what I do now. It was my business, my specialty, my vocation. And they're right. 

I'm in the business because I spend so much time around doctors and nurses, and undergo lots of testing, and allow so much of my daily thought process be devoted to thinking about (ok, obsessing over) my disease. I used to have a different business, a teaching job, but not anymore. I'm in the business because I try to be an educated patient and make the best health decisions for myself, even though I feel like I fail a lot of the time, on both fronts. 

I'm in the business because I don't have a choice. 

My friends still love me, and accept me, new business and all. Still, I don't want this to be my job. 

I'm coming up to my two year diagnosis date, and this whole time, through all of the testing and treatments and medications and special diets and new plans and failed plans, I've been waiting to feel better. I've started to, a dozen times, but it never seems to stick. So I've stopped making plans or trying to structure my life in any way that involves responsibility, because the only thing worse then letting other people down is hating yourself for it. 

But sometimes, it hits you in the face, how other people see you. You see through the portal-how you were-and you miss parts of your old life. You see your present, and there's a lot you'd like to change. And since you can't see the future, you put a smile back on your face and eat a girl scout cookie (mistake!) and reminisce, hoping hoping hoping that at some point your AAC stops being your only business. 

Post #113: SSDD

It's less offensive with a floral background. 

Welcome to the story of my life: same shit, different day. And I don't mean that literally, of course, because we all know my bowel movements aren't nearly that predictable. 

Last week, I fell asleep on the couch, nbd, when I woke with an alarming, stabbing, tearing, searing pain in my side. Last time this happened, almost a year ago, I was so alarmed that I went to the ER-I had never experienced pain like that before, and it scared the hell out of me. I thought something was torn or twisted or ruptured, and I was both relieved and frustrated when the doctor on call shrugged his shoulders and I walked out of the hospital with a clean CT and no answers. This time, same pain, but you know what? 

Same shit, different day. 

I was alone, and the phone was out of reach, but I calmly told myself to breath through the pain. Some insipid morning talk show was on, and I tried to listen to distract myself while feeling like someone was shivving me in the intestines (can you use that as a verb? As in, "to shiv?" I'm not down on my prison grammar). When the pain lessened a little, I slowly rolled onto my back, then onto my other side, and then sat up. The pain got better. I called the nurse out of habit, but I had no intention of going to the ER. I didn't expect her to have any insight into the problem, and she didn't, and I had already resigned myself to welcoming back my old friend, le liquid diet. 

Same shit, different day. 

That first sip of protein smoothie tasted like sweet, sweet defeat. 

The recovery from this....whatever it was (the doctors don't know either! wheeee) is going more quickly this time, and I've been adding one or two solid foods a day, waiting to see how my AAC will react to the softest, blandest, safest foods imaginable, dealing with the nausea and pain and discomfort that inevitably comes after eating something innocuous (like eggs). Nervously trying new foods, hoping not to wake up in pain or obstruct. 

Sound familiar? Because that's a big, heaping helping of same shit, different day. 

I went back to see my old doctor, and we made up a little-I didn't cry, we traded circumcision jokes, it was all good-but he had no idea what was causing my pain, and little advice about how to proceed. 

You know where to find that book in the library? It's filed under same shit, different day. 

I'm now waiting for insurance to approve the next test that might give me some answers, the one the new doctor ordered. I saw him a month ago, he submitted the claim, something went wrong, it was resubmitted, and now it will probably (best case scenario) take at least another two weeks to approve.

You know how to get there? You just merge onto the freeway, and take the same shit, different day exit. 

Oh, and this test? I have to swallow a tiny camera, which may or may not get stuck in my AAC. It has a 5% chance of requiring additional intervention/emergency surgery, and I have to prep like I'm having an actual colonoscopy. My doctor actually said it wouldn't be such a bad thing if it got stuck, because then they would know where the problem was. 

Hmmm, this room is a little musty. Maybe I'll light my same day, different shit candle. 

So here I am, back to where I was a year ago (minus the steroids, thankfully). I'm uncomfortable, stressed out, and waiting for a test that may or may not yield any useful information, but which will surely be a pain in the ass (literally and figuratively) to go through. Insurance is being difficult, I'm playing phone tag with doctors old and new, and I obsess and worry over what I eat, which makes mealtimes AWESOME. I wait for pain, and I wait for tests, and I wait for answers. I sleep a lot, and the days pass, and I try to find happiness in small things. Every day I turn into myself a little more, and reach out a little less. 

You all know the chorus: SAME DAY, DIFFERENT SHIT. 

I want a new song. 

Post #112: The results are in....

Thanks Doc!

Last week, after hounding my nurse/her assistant, I got back the test results I've been waiting for.....and they're normal. I was hoping they were not. I was hoping to get a justification to switch meds and a piece of paper to shove in my tiny doctor's face so I could say, HA! There is something wrong! I was right, you were wrong, and here's the proof (drops mic). 

Fucked up, no? 

To wish that you were, indeed, actually more sick so that your doctor will listen to you? Now I feel kind of defeated, like I made such a big fuss at the last appointment about how something isn't right, and the medicine isn't working, and now one tiny number on a lab slip has rendered my objections worthless.

Ever since I got the news I've felt like a half deflated balloon, the kind that floats dejectedly halfway between the ceiling and the floor. 

A sad balloon. 

I get teary eyed for no reason, and I'm having a bad colon week. Everything seems harder than it really is, and it turns out that it's much easier to hide in bed or watch bad TV than confront the realities of my current circumstances. Realities that include the fact that my doctor may have helped me as much as he can, or that I feel like I have hit a mark where people are essentially expecting me to just get on with my life already, sick or not. 

I see a new doctor next week to get a second opinion. I'm seasoned enough not to get my hopes up too much; I'm not expecting this guy to have all (or any) of the answers, but it will be interesting to hear his thoughts. It certainly can't hurt to have another pair of eyes pour over the paper trail of my sad colonic adventures. 

And while I wait, I will try to focus on the things that don't suck. The weather is getting cooler, which means it's time to break out the fleece. My AAC is tolerating pho again (wooo!). And, my city got a new radio station that plays the 90's hits I remember from 6th grade dances; I mayyyyyyy have almost been late for an appointment last week because I was rapping along with Salt N Pepa. I defy you to be depressed when Shoop comes on-it's just not possible. Seriously. 

Also, and most importantly, I'll keep reminding myself that no matter what any doctor tells me, I feel how I feel, and that can't necessarily be quantified by a lab. After that last appointment, I need the reminder. 

Post #111: Late night lightening lessons

GAH. 

Last night, a big storm swept through, and all day the news channels were wetting themselves with excitement over the impending atmospheric drama. Consequently, I spent the day in a state of agitated expectation, awaiting the coming fireworks show that would play out in the sky above my house. 

I really don't like thunder and lightening. They unsettle me. We get strong storms here, and the thunder is so loud the house actually shakes and quakes with every giant BOOM. I know some people love thunder storms; they throw open the windows so they can smell the electrified air, feel the wind kick up, watch every flash and strike and have their hearts beat with an elemental excitement instead of fear. I am not one of those people. 

I was alone in the house, and determined to act like a freaking adult and get on with my life. I was in bed reading-distracted, as the heavy rain began, when it happened: a totally unexpected, LOUD, house shaking body rattling clap of thunder. I literally jumped up in bed and grabbed my heart. The shock of it all was probably more frightening then the thunder itself, but my first instinct was to turn off the light, roll into a ball beneath the covers, and scan the horizon for future lightening strikes, so I could count the seconds and miles between light and sound, to gauge when the next BOOM might hit. 

I was trying to control my breathing, trying to get my heart to stop sprinting and return to a peaceful stroll, when the lightening strikes started coming closer the closer together. It looked like a giant strobe light had been installed in the neighborhood: light/dark/light/dark. I curled into myself further, already painful joints pulled closer to the body, stomach tight and nervous. 

The lightening kept coming, as did the thunder-closer and then further away, or far away and then closer. It was hard to gauge where anything was happening. I was taut, waiting for the next onslaught, but it was difficult to determine a rhythm. Better to stay ready, I thought; better to stay small and stressed so the scary things won't be so scary when they happen. 

And then, a tiny voice in my head: you can't control this. Any of this. 

You can't control this. 

You are not in control. 

The thought was like a shot of Valium. Instant calm. I unfurled. 

The more I thought it, the calmer I felt: I can't control this. Come on loud noises and bright lights! I can't control ANY OF THIS. I am not in control. 

I turned over and stopped watching the storm, and as the light show played out across the walls of my darkened room, I fell asleep. 

I woke up cold, tangled in damp sheets, only to fall back asleep and  wake up for the same reason. Night sweats. Was it the storm or the Crohn's? Hard to tell. 

Either way, I couldn't control it. 

Post #110: All by myselfffff......

But Brad! I thought you.....CARED for my colon!

I think I maybe just broke up with my doctor. 

A few things I know for sure: 

1.) During this appointment, I bypassed the ugly cry and proceeded straight to the bawling, hiccuping, snotty sob-attractive!
2.) I don't feel like having to fight to be heard or understood anymore
3.) I felt stupid and foolish for DARING to have a different opinion
4.) I need a second opinion

I came into the appointment prepared, as always, with a nice little information sheet and list of questions. Things started off as usual, but at a certain point I found myself tuning out the doctor's responses as an angry chorus repeated in my mind: LISTEN TO ME! LISTEN TO ME! WHY ARE YOU NOT LISTENING TO ME?

I told myself I wouldn't be combative, that I would be able to have a polite, dispassionate, constructive discussion of my disease and current symptoms. But guess what? I have no polite, dispassionate, or constructive feelings towards my health at the moment. I wanted to be noticed, and heard, and most importantly, believed. I left feeling pitied, discounted and embarrassed for having been so emotional. 

I wish I could have held my own during that appointment. I wish I could have had a rational conversation with my doctor without the hysterics, because crying in front of medical professionals makes me feel weak. But I wasn't able to, and halfway through the appointment I just gave up. I kind of dumbly nodded my head and said I understood, because I wanted it to be over. I didn't want to fight and argue and push back against anything. 

I don't think I have a bad doctor; in fact, I think I have a really good doctor.....clinically. But as I managed to spit out during the appointment, "I am more than my test results." The sum total of my experience cannot be accurately captured in a relatively clean colonoscopy or unremarkable lab results. I wish he could understand this. 

Finally, he asked if I wanted a second opinion, and I said I thought it was time. 

I could go into more of the specifics of the appointment; how he did, indeed try to blame my symptoms on my IBS instead of my IBD; how he recommended a dietary approach like he invented the fucking diet I'm on; how he invalidated my opinions because they were things I just "knew" and couldn't prove, or because "time of onset doesn't equal causation;" how he said he was sorry, and I believed him. 

It doesn't really matter. I cried all through the appointment, and then all the way home, and then in bed a little under the covers. I felt alone and disappointed and emotional and angry. 

I don't have the energy for this. I don't have the energy to advocate for myself with an entirely new doctor at a different hospital. I don't have the energy to start all over again, and repeat tests and conversations and spit out a list of symptom after symptom. I could stay with this doctor; things didn't end badly enough that there is irreparable damage, but it was certainly a turning point. I could pretend nothing happened and continue on, but we would both know things were different. 

I don't have the energy to push forward, but I also don't have a choice. 

Post #109: Welcome Home!

Does hamburger guy kind of look like Roger Ebert? Maybe not. 

Thankfully, my colon was pretty chill on vacation. 

It waited until I got home to freak the f-out. Hooray! 

This is just example #1596 of the complete mindfuck that is Crohn's. After a relatively stable month, where you eat out all the time, and tolerate a wide range of foods, and have no pain, suddenly: BAM! Your angry colon strolls into the joint and bellies up to the bar, orders a few shots of tequila, and TEARS THE PLACE DOWN. 

Try to limit my stress, you say? Try to stay positive?? YOU TRY STAYING CALM WHEN YOUR COLON IS UNPREDICTABLY ANGRY. Also, bite me. 

It has not been a good week. Last week was worse. 

I am so, so tired of all of this. 

I got some blood work done, to see if I can figure out why my AAC is being an AAC, but really? Those numbers won't give me much clarity. I have a doctor's appointment next week, and I doubt I'll learn anything new there either. I have been avoiding going back, first  because I was feeling better, and now because I'm feeling worse......it doesn't make sense to me, either. I don't want to see my doctor, because I don't want to hear what he has to say. I don't want to get my hopes up. I don't want to hear anything that will make me more afraid or stressed out. I don't want to hear any of the familiar platitudes, or get fed any of the familiar lines. For instance: 

If he says I'm in clinical remission.....

If he blames this on my IBS (lucky girl, I have both!).......

If he tells me to give this medicine more time........

I will probably slap his tiny doctor face. Or leave. Or, realistically, start to cry, because I am too tired and frustrated to do anything else. 

I was going to try to write a funny post about how I always read food magazines in the bathroom (true), but I don't have the energy. I had a bad colon day. 

And judging from the state of things down under, I might have a bad colon night. My AAC is on another bender, soused to the gills and looking to start a fight. 

And there is nothing I can do. Welcome home, indeed. 

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 #107: A failure to communicate

Here comes the bride.....all dressed in CONTROVERSY

This week has been hectic. I have family visiting-two adults, two young kids-and it's been a whirlwind of sticky apple juice fingers, trips to visit the pear trees in the backyard (or parrot trees, as one kid calls them), dashing around the playground, touching ALL THE THINGS at the children's museum, dark chocolate birthday cakes, and organic mac&cheese.

It's not the mess or the chaos I mind, although I have to frequently resist the urge to wipe down all the surfaces of everything in the house (how did cherries get smooshed into the upstairs carpet?!)-it's not the lack of privacy (closed bathroom doors? ha!), or even the invasion of my personal space, something I am usually wary about. When a tiny person wants to snuggle with you on the couch and watch nature programs, you stop worrying about the fact that he probably didn't wash his hands the last time he peed and just let him curl up next to you and put his little feet under your butt, to keep them warm.

What has me kind of depressed is an interaction with one of the grown people. Somewhere along the way, I picked up a flu like illness-my joints are swollen and painful, and my throat feels as though I've been gargling with glass chips. I'm guessing that despite copious amounts of hand sanitizer, my immune system was no match for the DECADES worth of germs coating every surface of the children's museum, and someone probably sneezed on me when I wasn't looking and there you go (update: I have strep throat! ugh).

Naturally, all of this occurred half way through a jam-packed visit with planned outings to the aquarium and zoo, dinners out at favorite restaurants and various other adventures. I could feel the illness coming, and as I hobbled out to the patio my family member asked what was wrong, and I told her.

"Why are you sick??" she asked in an accusatory tone, her brow furrowing in annoyance.

I was in no mood. I believe I told her to ask my mucus, because I had no idea how or why (really?!) I got sick.

Later, as I was curled up on the couch watching reality bridal TV (no judgement! I'm sick!), my temperature rising, she came and sat down next to me. There was a story about a bride with an autoimmune disease trying on dresses. She had huge bruises up and down her arms, and she talked about how from day to day, she didn't know if she would lose weight, gain weight, have hair, have no hair, or be covered in sores.

She tried on dress after dress with one particularly large sore on her arm, something she was obviously self conscious about. Simultaneously, we had opposite reactions; I commented, "Poor lady, that looks painful" while my family member said, "Ewww, gross, why are they showing that?"

It was then that I had a moment of realization: this family member will never, ever understand my Crohn's.

It may seem like a leap, but I realized she just doesn't have the compassion chip necessary to process chronic illness. It will never be anything other then an imposition on her, an annoyance, something to be irritated or disgusted by.

Some people try to be empathetic but just can't understand because they have no experience with chronic illnesses, and some don't even try. They may be sympathetic on the outside, but on the inside they are mentally watching the clock and waiting to change the subject. Maybe this is because of discomfort, or impatience, or the feeling that chronic illness is an inherent weakness (WHY are you sick??)-but they will never approach the issue with anything other than their biases and impatience.

I had been trying to explain things to this particular relative, to bring her into my experience, because it's an important part of who I am right now. That stops today. It's kind of freeing to stop putting myself out there, making myself vulnerable, because I know that she doesn't care to understand.

As much as I would like to, I can't simply excise this part of my life. Since my diagnosis, it's frequently been the most time consuming, emotionally draining, physically exhausting reality in my life. I think this family member has been waiting for things to go back to normal (that's what I want too!), but in the meantime-this is who I am, and this is what I'm going through. 

I won't pretend that these things aren't happening. I won't sugarcoat the truth. I don't have a choice about going through this, but people in my life do have a choice about whether or not they want to hear about it. I forget that, as I tend to go with a full transparency approach. But in the future, I'll be more watchful and wary. I guess I just assumed that people who cared about me would want to know, but as with anything else, I guess there's an interest threshold, one that i have apparently exceeded with this particular person. 

This person has a choice. I keep telling myself that. 

But it still feels like rejection, of me, my disease, and the way I live my life. 

Post #106: Dispatch from the land of produce

Warning: excessive amounts of produce consumption may cause intermittent vegegasms.
*Side note: it's just salad, lady. CALM DOWN. Don't overexcite yourself  before the main course. 

So! 

When last we left off, I was embarking on a shiny new diet. Two weeks in, I can now confidently report: 

1.) I have eaten more vegetables in the last few weeks than in the last few YEARS-combined. 
2.) There is no food that I wouldn't give up, or no new food I wouldn't try, in service of feeling better. 
3.) My digestive system is confused. 

Has this diet magically solved all of my digestive problems? Alas, no. Has it helped to lessen some of my symptoms? Yes. Is my AAC pleased with this change in routine? Not so much. 

I did pull kind of a bait and switch on my colon-one day it was all white bread and Gatorade, and literally the next day it was whole foods and roughage and whole grains and healthy fats and protein. I totally don't blame my AAC for being confused, and expressing this confusion in a variety of digestive complaints. 

For so long, I was afraid to eat these foods-I expected pain and misery and general internal havoc, and there has been some of that. But it was a leap of faith to attempt this diet in the first place, just as much as trying a new medication, and I want to stay the course. I've put in the time and effort, seen some return on that investment, and I don't want to let any symptoms push me back into the warm embrace of processed foods. 

This post is kind of a pep talk for myself-I had a bad day. And part of me wants to curl up in bed with a baguette (why does that sound so dirty?) and a dozen bagels (still kind of dirty) and write off the whole pursuit as a failed attempt, another exercise in dashed hopes and false promises. But even if my stomach hurts, and I'm running to the bathroom, and I want to hurl, at least I'm feeding my body with healthy, beneficial things, instead of snorting wonder bread and still experiencing the exact same issues. 

I know that can't be a bad thing. 

I won't let fear make me backslide, or push me back into my Crohn's rut. Every celery stick, every carrot, every tomato, contributes to the greater good. I have to believe that to keep going. 

Please note that I haven't discontinued any of the medication I'm on-these dietary shenanigans are in addition to many drugs I take on a daily and monthly basis. If this diet were making me feel actively worse all the time, I would seriously reconsider my commitment, but I wasn't feeling so hot on the drug regimen I was on. I'm just looking for more good days than bad, more energy, and the ability to digest produce. Hopefully, the drugs I'm on and the diet I'm trying will work together to make that possible.

the goal: happy plate=happy colon

Post #105: Dispatches from the land of wheat

This bread is sad, much like my colon. 

I spent over an hour wandering through the aisles of my local hippie mart, stocking up on bags of eight dollar gluten-free cereal and quinoa porridge, wheat free English muffins the weight of hockey pucks, and more produce than I have consumed in the last six months combined. 

I came prepared with double sided lists; I scrutinized each label for offensive additives, valuing purity of ingredients over taste and texture. I circled round and round the bins of dusty flours, spent far too much time choosing nut milks, and was so overwhelmed by the whole process that I didn't even think to head over to the cosmetics section for an impulse purchase (per usual). Exhausted, I loaded my purchases into the car and drove directly to the nearest pizza place. 

As I was somewhat guiltily eating my margarita pizza (sans cheese), I chose to ignore the shiny new wheat free foods banished to the dark corners of the trunk. As I sit here now, head pounding, body flushing, trying to keep said pizza down, three things are abundantly clear: 

1.) I am more afraid of this new diet experiment than I thought
2.) Emotional eating doesn't go away, no matter what your current relationship with food
3.) In some ways, I am more afraid of things changing (despite the possibility of improvement) than things staying the same

Isn't it interesting that when there is stress involved, the body overrides the mind's innate wariness about food and does a face plant into the nearest source of fat and carbs? In this case, food was both the cause of and (temporary, stupid) solution to the problem. Anxiety about changing my diet led me to eat a food with a high likelihood of making me feel like shit (mission accomplished!), all to avoid thinking about the other new foods I will be eating on Monday, which are healthier and probably less likely to make me ill. It's all very confusing. 

To put it another way: I am worried about eating almond butter when I have spent over a year ingesting/injecting a number of powerful immunosuppresents and other scary drugs with page long lists of potential side effects. 

It makes no sense. I know this. 

I could chalk this all up to nervousness about "rocking the boat," of taking any chance at altering the current, relatively stable (or at least predictable) condition of my bowels. I could say that I was worried about placing all of my hope in another plan, when other plans have failed so miserably. I could admit that I worry about making things worse, or messing up my body somehow, though the latter is unlikely. 

Those things are true, but I think the real reason I'm anxious is that this is the first proactive step I've taken beyond my doctor's guidance in quite some time, and as such is an acknowledgment that I want more, from my medicines, from my diet, from my life, from myself. 

It feels risky to not want to settle anymore. 

Especially when I know that more, in whatever form, might not be possible. 

And so tonight, as I try not to hurl, I am going to remind myself that any relative risk is worth any potential benefit. Just like I have to talk myself into trying a new pill, I will talk myself into this. At the very least, all of the new foods sitting benignly on my dining room table, sequestered from the rest of my pantry, are unlikely to give me nigh sweats, high blood pressure, joint pain, or tremors, and there is some comfort in that. 

Post #104: Team Picky

And amber waves of.......inflammation? 

I have a confession: I used to be a self-righteous diet snob. 

I used to make fun (in my head) of the chia seed slurping, quinoa snorting, ancient grain loving, make-your-own-nut-milk types. The hipsters and the raw juice fanatics. The whippet thin ladies in lululemon yoga pants who populated the aisles of Whole Foods. The suit wearing professionals pouring over ingredient lists with laser like focus, paying $8.99 for a package of gluten-free brownie mix that will invariably look (and taste) like sewer sludge. 

I had more tolerance for the true die hard hippies, the kindly men and women who cruised the bulk item section of the local co-op, buying five pounds of organic dried black beans to cart home on their bikes (in the rain. whilst wearing Tevas and hiking socks). 

Of course, there were those with true food allergies, but in my cynical mind, the proliferation of gluten-free fake out foods in every local grocery store was due more to the whims of an upper middle class consumer base obsessed with following the latest diet trends. Gluten, in particular (and now to some extent soy, dairy, and refined sugars) seemed to be the cause of all of our health woes. It was the devil in grain form. 

My bullshit meter exploded. This is the new Atkins, I told myself. People have evolved to enjoy a varied diet, which includes such illicit foods as pasta (gasp!), bread (shock!) and muffins (horrors!!). I scoffed at the people who strove to eat like cavemen, or only ate hot dogs and bricks of cheddar (seriously, I know someone on Atkins who did this), or ate according to blood type. 

Before Crohn's, I used to pride myself on being a "good eater." This meant that I was flexible. Ethiopian food? Vietnamese? Japanese? Greek? Sure! I could find something to eat anywhere. I enjoyed trying new foods. I ordered off the menu without substitution. I could go to a dinner party and eat what was served without hesitation. I could overindulge one day and be fine the next. I wasn't afraid of food. 

I'm not a "good eater" anymore. 

What I didn't account for, in all of my supercilious, judgmental assumptions, was that for some of these people, diet was a last (or maybe for the smart ones, first) attempt at mediating illness. I looked at these shoppers and saw picky eaters, when in fact I might have been staring at sick ones. Like me. 

I resisted changing my diet since my diagnosis. I counted on the medicine and the doctors to make me feel better. In some ways, I am better, but in many ways I am not. As I said in my last post, I was waiting for the turnaround, so it didn't make sense to me to radically alter my lifestyle in the meantime. I ate what I could tolerate, justifying my diet with the oft repeated "diet just doesn't matter with Crohn's" refrain I kept hearing from all of the medical professionals around me. 

Lately, though, my thinking has changed. How can what I eat not matter? When my nurse, talking to me after the doctor had left the room, suggested an anti-inflammatory diet, I took it as a sign. It was time to try something new. 

All of this is to say that next week, I join team picky. 

I'm not going to name the diet I'll be trying, because I don't want to advocate any specific dietary restrictions, and I don't even know if it will yield any positive results in my case. I will say that I won't be eating dairy, wheat, or refined sugar for the foreseeable future. The diet I picked is one with a lot of clinical research around it, and I'm working with a dietitian to map it all out. 

I am of course afraid that this will make things worse, but I play to go about it in a very slow, measured way; I'm also curious to see what effect, if any, this has on my health. 

I figure if I can give the super scary injectable medicine a six month trial run, I can extend the same opportunity to a diet, no matter how restrictive. 

And to the people I was silently judging for buying  6 dollar bags of gluten free pretzels: I'm sorry. I was an asshole. If those pretzels made you feel better, I was in no position to judge your choices. You might see me wandering the aisles of Whole Foods in my yoga pants-please be kind. Also, save me some snacks. 

Post #103: Shield your eyes....

Because my life is SO GLAMOROUS you might need shades, y'all. I'm not southern, but I feel like I can still get away with that. 

Behold! Things that happened this week, with pictures!

Super expensive butt aspirin! 

This doesn't really need an explanation, does it? 

Costco, where the elite meet to eat (free samples)

You know what makes a super crowded Sunday afternoon Costco experience that much more enjoyable? STOMACH CRAMPS. 

I wish....

A list of things that gave me heartburn:

Juice

Toast

Eggs

Boneless, skinless chicken

Smoothies

Cheerios. Plain ass Cheerios. 

(hooray!)

This bathroom is swanky, no?

Depressing: when you spend so much time in the bathroom that you go through all of your reading materials (we're talking two periodicals and a stack of catalogs, people) and can't get up to get more. And no, I do not take my smart phone into the bathroom because EW. You put that thing up to your face. A thousand times no. 

UGH UGH UGH UGH UGH

Hearing my LEAST FAVORITE phrase from my doctor. Again. Sigh. 

Making it rain, etc. At the pharmacy. WHOOOOOOOOOOO. 

Also depressing: spending obscene amounts of money at the pharmacy; even the pharmacy tech was like, whoa. 

So, after such a glamorous week, where am I off to next? London? New York? Cannes? Oh right. 

Except without the mohair (??) tea cozy. Sexy.

                                                                                       Try not to be jealous.

Post #102: Great Expectations

Well, seeing as how you're already all gloved up.....

Hey, guess what I just had? My second colonoscopy of the year! Whooo. I seriously should enroll in some sort of "frequent flier" scoping program. Perhaps there is a punch card of some sort? A 10% off coupon for valued customers? A BOGO promotion? 

Everything went smoothly. I didn't talk to my doctor afterwards, but I did talk to the nurse who was in the room the whole time, and she said my AAC looked "ok." I read on the paperwork that he took some biopsies as well, which I knew because I had that delightful "kicked in the gut by a tiny, angry shetland pony" feeling in my gut. 

The day of the procedure was my Crohn's med injection day, and I read online that giving yourself the shot standing up was easier/less painful then doing it sittting down. Ha ha, THANKS A LOT INTERNET. I had a golf ball sized lump that is now a golf ball sized bruise, a constellation of green and yellow and purple dots staining my abdomen. My eye is drawn to it every time I step out of the shower. It looks about as violent as giving myself the shot sometimes feels. 

Sorry if this post feels scattered, but so does my thinking around this. I haven't blogged for a while, and it feels a little awkward. It's not like anything changed, in terms of my AAC; increasingly, I'm just getting sick of talking about it. About the food I can't eat, the weird procedures, the night sweats, and the joint pain (that's a new one)-how I feel like an 80 year old women when I come down the stairs in the morning, gripping the handrail and saying "ow. ow. ow." under my breath as my swollen ankles pop and creak in protest. 

Depending on the results of the colonoscopy, can I say that this medicine is working? Is it worth the side effects? And the most important question of all: 

Is this as good as it gets? 

I'm trying to wrap my head around it. I've spent so much time invested in the idea that I was going to return to a place of normalcy, where I felt healthy again. Where I felt good, and able, and strong. I'm not at that place; sure, I may be a few steps past where I was at my worst, but I didn't think this was the big "tah dah!" stage of this whole process. I'm not a shiny, perfect example of a successful "after;" maybe after a year and some change, I thought I would be. That probably wasn't a reasonable expectation in the first place, but it's what got me through. 

I guess I just don't know what I'm waiting for anymore. This might be as good as it gets. And if it is, how do I stop waiting around and start moving again? How do I progress when I feel like I'm still waiting to be healed? How do I shake the feeling that I should wait around until things are better? That is my inclination, but it maybe be time to reassess. 

All of this is floating in my mind, a perplexing stew of thoughts and hopes and feelings and fear. There's a little determination in the mix, a little hint of impatience. But mostly a dull confusion that makes everything hazy and difficult to discern. 

The recurring theme in this blog, and in my life, is a desire for clarity. I don't think colonoscopy #2, as delightful as it was, will give that to me. 

I just don't know how to wean myself off of expectation. I project my hopes onto every blood test and invasive procedure, looking for medical markers to guide me on my way, to help me make good choices, the right choices. Clear signs that say, definitively, YES! Stay on this medication or NO! Try a new one. 

I end up with a lot of maybes, and at this point, as you can probably tell, I'm just so freaking unsure of which way to turn.