Post #118: Colon fear

ooooooh, symbolism

Oops, there goes another month between posts. To be fair, I've had two colds in the last two months, but an excess of mucus does not impede my ability to write. That would be laziness (or forgetfulness, or both).

Tonight I am thinking a lot about fear; more specifically, colon fear. I've dealt with my fair share of anxiety; I know how the body feels when it panics. I know what rational thoughts to tell myself to calm down; I understand that just because something feels scary, it is not necessarily so. Repeated exposure to anxiety producing situations have allowed me to (somewhat) separate the feelings from the reality. It took me years of, for lack of a better word, desensitization to be able to attain this perspective. I've had an anxious brain my whole life; I've had an anxious colon my whole life; but I've only had an ANGRY colon for a few years. I used to think that fear was fear was fear, but lately I'm realizing that colon fear is different. I'm not desensitized to it yet. You would think that after a year or two's worth of daily cramps and pains and other symptoms I would stop mentally packing my hospital bag every time I spend an agonizing hour on the toilet; but (confession time!) I still sleep with a phone next to my bed and a sports bra and sweatshirt by the nightstand, should I need to get dressed in a hurry in the middle of the night. Colon fear is still very real for me.

Now that I've pretty much concluded that my new "normal" isn't very normal at all, I've been putting out feelers into the real world, trying to figure out what I want to do next and how I can balance the unpredictability of my colon with the needs and demands of the rest of the world (friends, employers, etc.). I've been thinking about what I want to do, and what I can do, and I've come to realize that my colon fear has been clouding and confusing my conclusions.

I heard from an old friend today, who has been as understanding as possible about my AAC and the limitations it places on my life. Hearing her voice on my voice mail made me smile and think of the hijinks that would ensue if we lived in the same city. But we don't. I rarely see her, and that sucks. There's a reunion coming up, and a lot of my friends will be there, and part of me would love to go, but then colon fear rears its ugly head and my mind is inundated with the unknowns of travel, the lack of control over food and bathrooms and transportation, the sick people on the airplane, being away from my doctor and a hospital system I'm familiar with.....the list goes on and on. In any given week I have a bad day or two. How does that look when I'm thousands of miles from home?

The reality is that people with Crohn's don't cloister themselves into hermetically sealed living pods (I wish) away from all of the unknowns of the world, from flu-stricken seatmates to closed bathrooms to problem foods (what if all they served at reunion was lettuce!? ahhhhh). I've been trying to stay in the proverbial pod, and it feels safe, but really it's a prison of my own creation (see illustration above). Part of me wants to break free-to live life with reckless, germ infested abandon-but the colon fear wraps itself around my brain, whispering consoling thoughts about missing life's events and doling out a never ending supply of hand sanitizer.

Someday, my hope is that colon fear will just become like any other fear, something to be considered and put in its place. For now, though, it seems too large to conquer. The catastrophes it promises still seem possible to me. Pre-diagnosis, I was always feeling like I was waiting for the next bad thing to happen, for the next shoe to drop. At this point, I've been hit in the head by any number of falling footwear, and I can't shake the fear that they will keep falling and falling and falling.

And it's that thought, that fear, that specific colon fear that will keep me grounded and away from some of my very favorite people in the world. When it's all typed out, plain on the page, it really does seem like a lot to give up.

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 #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 #31: Is there such a thing as colon yoga?

Annnnd push all thoughts about your ulcerated colon away......

All of the blogs/online articles/waiting room liteterature/books about Crohn's talk about stress relief. I think this is mostly because there aren't too many proactive things you can do about your Crohn's, so the literature throws us a bone: "Although it hasn't been proven effective in alleviating any of your symptoms, it hasn't been disproven either! So bust out the yoga! Meditate! Relax! It's not as though you have a chronic autoimmune.....oh right."

For a long time, when dealing with my anxiety, my body often clued me in to what I was feeling long before my brain caught on that something was amiss. My posture would change; my shoulders would ache from being clenched all day; I would find my hands curled into fists even though I felt calm. Back when I felt more attuned to my body, I would notice these postures, and recognize them for what they actually were: physical manifestations of emotional turmoil. Now, my body sends a lot of different signals all the time. It's hard to weed through the symptoms and pain and, think, aha! My body is tense. What is the source of my anxiety?

Of course, with the Crohn's, there are many obvious sources of anxiety, and scenarios that invoke worry and concern. Recently though, with the steroids still on board (yes, still tapering), I have been able to seperate, to some extent, some of the colon anxiety and some of the life anxiety. And as usual, the anxiety starts in my body.

Some examples: recently I had a super stressful hour long phone conversation. I realized I needed to divert my brain and blow off some steam, so I headed to my craft shack (dining room, whatever). I was sitting there, fiddling around, when I noticed that my ear was killing me. I thought, great, on top of all of this shit I now have a raging ear infection, and I'll have to take antibiotics, which will further piss off my AAC, SUPER AWESOME WHY IS THIS HAPPENING NOW. Scowling and muttering obscenties under my breath, I started to massage my ear when I realized......my jaw was clenched. And it had been since the conversation, an hour earlier. The pain from my jaw had travelled all the way up into my ear, and all the way down to my neck. As soon as I started to open my mouth and stretch my jaw, the pain went away.

When I fall asleep, I find that one of the most comfortable positions is to wrap my arms around myself under a few layers of blankets-and I stay in that position all night, holding on to myself, buried in sheets.

Since I started to notice these things, I also noticed that throughout the day my shoulders inch towards my ears, in a kind of perma-hunch, like an arthritic turtle trying to get back into his shell. It's been a constant new mantra: shoulders down, head straight. As I go to and from the bathroom: shoulders down, head straight. As I check email: shoulders down, head straight.

I think I might need to try some of this relaxation business.

#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.

Post #9: 98.5% less disgusting than before!

My colon isn't just angry: it's leading me on a SPIRITUAL JOURNEY

So, today was a little better, didn't defile any furniture. I'm kind of horrified about yesterday's post, because in general I'm not an over-sharer, but I think for me it's important to write truthfully about my experiences.

As someone who has experienced anxiety in fits and starts for, oh, my entire life, hearing the truth is important. If you're in the middle of a panic attack, your first instinct is to minimize the reality of the situation: "I'm fine! I'm sittinghereinthemiddleofaplaneandIfeellikeIcan'tbreatheandisitreallyhotinhere BUT IT'S FINE EVERYTHING IS GOING TO BE FINE!" Actually, everything is not fine. You are on a plane and you are having a panic attack and you might vomit on your neighbor. That is the truth. Granted, you might slow your breathing, have a cold drink, and get through it without anyone noticing (been there!); that's not the point. There are many feasible outcomes to this situation, but to suggest (to yourself, or to have someone else say it to you) that you're fine and everything will be fine and that it's all FINE has never made me feel calmer. It doesn't acknowledge the truth of the situation, and it minimizes the experience.


I had a therapist once who told me to treat my "anxious brain" like I would treat a three year old: with patience and kindness (obviously, she had never seen me around a toddler). According to her theory, you should treat your "anxious self," the tiny scared version of yourself, with the kind of bland, condescending "You're alright! every thing's fine!" bullshit that I hate. When I was an actual toddler? This would have held weight for me. As a grown ass person, however, I just know better. Things might actually not be all right. I might not be fine. Being honest about the situation means I can consider the options and get information and try to make good choices. The "everything is GREAT! You'll be fine!" ruse seems like a kind of denial.


Bringing it on back to Crohn's, as all things must eventually circle, I get angry when people tell me (non-medical people) that I'm going to be just fine. To explain further, there's another anxiety reducing technique that makes you rate the probability of the things you fear happening. For example, if you're afraid to drive, you might initially rate the probability of having a panic attack in the car at 70%. Then you drive. And drive some more. Eventually, that probability drops in relation to your positive, non-freaking out car experiences. So maybe it's down to 15%. That means you can get in the car and be reasonably certain you will not have a panic attack. With Crohn's, I don't have nearly enough data (I am such a nerrrrrrd) to make such predictions, but I do know that there is a probability, and maybe a strong probability, that bad things will happen in the future, or can happen. To me, this isn't pessimistic; this is the truth. And the truth doesn't scare me as much as someone telling me that everything is GREAT because I know that that's a lie.

It is a fact that 60% (I've also read 75%) of people with Crohn's will need surgery in their lifetime. If you tell me that it will never happen to me, that I'll always be healthy and free and sparkly, I might kick you in the gonads. That is a lie. You don't know, and I don't know. But I do know there is a chance of bad things happening, and that is the truth. I try not to dwell on these things, but I can't willfully subscribe to the falsehood that I am somehow exempt from these complications.

So. All of this was a totally random tangent when I meant to write about the asshole naturopath and his theory about the "journey of illness" and his insistence that we are all given lessons to learn through the course of our diseases (thus, the tee pee). Another fun topic for me to rant about! Maybe next post.

I am going to take my bloated self (for serious) and drink some water and lay on the couch and poke at my stomach. Tomorrow, I'm going to go shopping and out for lunch. I will probably be able to do those things without wearing depends. And that's the truth.