Post #32: My yoga pants are pretty tight....



Is there no option C??

Quick update: taper taper taper taper, super tired, taper taper taper.

Now you're all caught up.

In other news, I have lost my give-a-shit. I wear inappropriately tight yoga pants to the grocery store. I watch TV all day. I eat the same foods over and over because I'm too lazy to try new things. I don't wear makeup, even when I had what I am convinced was a small boil on the side of my face. I get irritated if I have to wear real pants. I have a somewhat relaxed attitude towards bathing (still mostly every day, it's not like I'm living in a pit of my own filth). I shaved my legs for the first time in a month yesterday, but only because I was bored.

I wouldn't call this depression. This is more like focused exhaustion. If I'm not going anywhere, and I'm tired, why should I wear real people clothes? I should save that energy for things like meal preparation and reading TMZ. I COULD moisturize, put on sunscreen, dab on coverup, set with powder.....or, I could use that energy to go to the grocery store with my giant boil shining like a beacon, and hope that my long bangs cover that mother. Again, I just don't give a shit.

And yet, I know I need to marshall up some give-a-shit, because I need to take care of my AAC. I need to make doctor's appointments and get blood work and get a bone scan and start taking my freaking vitamins and come up with a plan for when this taper is over (in about 2 weeks). There are a lot of out of town guests coming. I need to send out late birthday presents. I'm going on vacation for 2 weeks. Eventually, I have to go back to work.

But I am so tired.

In the past two days, I told two people I had Crohn's, and talked about it with a relative, and they all said the same thing: aren't you lucky that there are so many good treatments out there for Crohn's? One talked about her friend's son getting infusions every few weeks. Another, who is a pharmacist, said, "well, there are so many good tools on the market." A third told me about her friend who had Crohn's and had just had a baby, and how when she finally found the right medication she "got things under control."

If my give-a-shit was in full force, I probably would have been all uppity and annoyed about their cavalier attitude toward my colon-just take a pill, all will be well! But part of me wonders if all of this medication avoidance is a futile pursuit, and if I shouldn't just take the freaking pills.

If anyone has seen my give-a-shit, let me know-I need it to make some important decisions.

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.

Post #30: CONSISTENCY IS MINE! (on this blog)

In honor of my 30th post! You can eat it in my honor. Huzzah!

So, 30 posts! I am impressed with my own consistency here. And as you know, I'm a big fan of consistency.

As the taper continues, my bowel situation is not improving. I'm having more cramps and more pain. I knew the taper was about buying me time, and I feel like that time is running out. I've been putting off making the doctor's appointment (with my real doctor in a real hospital who doesn't tell me I'm going to explode if I sniff bakery dust) where I'll plan my next move.

Since I spent so much time talking about the horse I didn't pick (asshole naturopath! *shaking fist*), let me tell you a little about the one I did. Let me preface this description by stating that I must be kind of a nightmare patient. I am over-prepared, nosy, and suspicious. Now, some of these are commendable qualities, but I think there is probably a limit I exceed in terms of doing my own research and forming my own opinions. This is because when I am afraid or overwhelmed, I collect information. I'm not talking a quick google search (although I do that too), but more of a comprehensive medical journal literature review, with articles highlighted, collated, and organized by year. yikes.

Back to my horse of choice (HOC). I come to every appointment with a list of written questions (I am such a nerd). I like to go down the list, and then have a discussion about next steps and recommendations. I have never had a doctor reject/mock the list (to my face). Most doctors say that it's helpful and refer to it throughout the appointment. I prepare for my appointments because I know I have a limited amount of face time with my doctor, and I want to get all of my questions answered. I know that this is a positive/proactive way of dealing with the situation, but there is always a part of me who dreads being "that patient," the neurotic, difficult, overbearing know-it-all.

I've talked about it here before, but I think women are conditioned to respect medical authority figures in a way that is not always conducive to their personal health. This is a broad, sweeping generalization, but I know that I often feel like I'm overstepping my bounds if I ask too many questions, or disagree with a suggestion, or seek a second opinion. Intellectually, I know these are smart choices, but emotionally there is a fear of seeming like a crazy harpy. I do respect my doctors-and I know they did not go through medical school/residency to be second guessed by an overly confident wise ass with a penchant for googling. At the same time, I don't think it's wrong to ask about a less aggressive form of treatment, or see what all of my options are. At the end of the day, I'm the one who has to live with these choices, face the consequences, and deal with the side effects-so I'm the one who has to ask the questions, do the research, and find a doctor who can educate me about my options.

My horse of choice (HOC) is just such a doctor. He is smart, but more importantly he's......steady. That's an appropriate way to describe a horse, and a weird way to describe a doctor, I know. But he is calm and capable in a way that inspires confidence and trust. In our next appointment, when I am drug free, I am going to have more decisions to make. It will be difficult. But while I am nervous and cracking jokes to make myself feel better, I know that my HOC will quietly absorb the information I present, and give me his honest opinion about what to do next. I know that he will not be condescending, or try to intimidate me into choosing an option that doesn't feel right for me. And that, if nothing else, is comforting.

Post #29: In which I say "predictability" a dozen times

Must use this card before it become culturally irrelevant in 3....2....1.....

Two things to note:

1.) The girl looks way too happy about her spasming bowels, but maybe she's jigging all the way to the chamber pot?
2.) That spicy fish stew at the restaurant? That had no dairy? That I thought I would take a chance on? NOT SUCH A GOOD IDEA.

I was out to lunch today (see note above) when a friend asked me what I wanted, in terms of my health.

Here's what I said:

Consistency, regularity, predictability.

It goes without saying that these things would go hand in hand with some symptom relief (nausea, diarrhea, cramping, fatigue, and pain). After hearing those qualities, which sound like a bank advertisement or a really bad dating profile, my friend said, "well, does anyone really have those things?" It's true that the human body is not a machine, like a toaster, that comes off the assembly line all tuned up to factory specifications. You can't necessarily depend on your body to toast a piece of bread the same way day after day (or have normal bowel movements every morning, whatever). But I think that a lot of people, at least those who don't have chronic illnesses or active illness (a cold, pneumonia, jock itch), wake up without thinking about how their body will function over the course of the day. It's assumed that it just will.

When I wake up, I don't always know if I'm having a bad day or not. I can wake up feeling fine, and three hours later be back in bed with some RLQ pain (that's right lower quadrant, people). I can wake up feeling queasy, and then steadily improve, and then feel queasy again. I can have a colon explosion in the morning, take a nap, and feel fine for the rest of the day.

For instance, last night I was supremely nauseous. This morning, same thing. I dragged my ass out of the house, refusing to miss my lunch date and planning on ordering a sprite for lunch, but I ended up feeling better by the time I got there. I ate lunch, felt fine, came home, spent some quality time in the bathroom, took a two (ok fine THREE) hour nap. Nauseous, then hungry later, now having some RLQ discomfort. So, was this a good day? A bad day? It was kind of both. Now try planning a life around this kind of inconsistency, irregularity, and unpredictability. Try holding down a job that requires you to have the very qualities you want for your colon; a job where you interact with people, talk in front of people, and need to be focused, present, and aware. That is what I'm signed up for in September.

Whenever I get pissy and frustrated with all of the things that aren't working (well, they're working, just in an UNPREDICTABLE way), I try to remember what my nice naturopath once told me. Lest you think I'm completely prejudiced against the profession, for the last few years I've been seeing not one, but TWO highly intelligent and compassionate naturopaths (the first one narrowed her practice to treat patients with a specific disease and do research around that disease, so I went to her colleague. No drama involved, that all came later with the asshole naturopath).

I came into my nice naturopath's office one day, super overwhelmed and frustrated by a lot of abnormal lab tests and scary new symptoms (this was pre-diagnosis), and I started to cry. I was feeling broken and sick. He handed me a tissue, looked me in the eye, and said, "If you made it to my office, 98% of your systems are working. You can sleep and eat and think and drive. It's the other 2% we need to work on."

Maybe the percentages have changed a bit, but I try to remember this when I'm feeling especially sorry for myself. There is a lot going right. There isn't a lot of predictability in that 2%, but it's not the whole picture (even though it feels like it is). And it's something to continue to work on.

Post #28: Crohn's is a GREEDY HIPPO

This guy obviously lives in his parent's basement, and maybe does bad things to cats.

Today was an ok day; better in the morning than in the evening, as is usually the case. I seem to have a new pattern: evacuation day, followed by a rest day. On evacuation days (this makes me think of an entire day spend doing fire drills, or stop/drop/rolling on the driveway) I am way more tired, like the act of creating normal poo completely drains all of my body's energy. I don't think this is a good sign, but at least there is something normal going on in colon town? Who knows.

Tonight, though, I'm feeling sick. My stomach hurts and has been doing some acrobatics after I eat. I'm nauseous and I think I may have a tiny fever. I can't seem to concentrate on any one thing-I feel like I've watched everything good on TV (horrors), reading seems like work, and I don't really want to learn about feelings in O the Oprah magazine. I should do laundry and pay bills and clean the kitchen, but I'm procrastinating here instead.

I thought the name of this blog, Angry Angry Colon, was a pretty clear allusion to the game above, but maybe I should explain. In my house, growing up, we never really had "fun" games or "fun" cereal or "fun" processed food. Sure, there was Monopoly, but there was no Mousetrap. There was NEVER Nintendo, and all of the cereals were high in fiber. My dad used to eat this one cereal that truly looked like bark, and we used to call it his "rabbit food." This is not to suggest that I had some Dickensian poorhouse style childhood (please sir, more high fiber gruel, sir!), but that my parents wanted everything to be educational, or at least not frivolous. If there is one word I would never use to describe my parents, it would be frivolous.

Naturally, "dumb" games and fake cheese snack products (Cheetos! because in nature, dairy products are NEON) were irresistible to me, and I used to love the game Hungry Hungry Hippos because it was quick, pointless, loud, and completely lacking in educational value. There's really no strategy involved-whoever has the greatest hand/eye coordination wins. Inevitably, one of the hippos would break from being vigorously pounded, and there were more white gumballs for the other hippos. It was the kind of game that was SUPER EXCITING for about 3 minutes.

I named this blog AAC because it kind of sounded like the game, and because the other alternative was more crass: before I was diagnosed, when I was undergoing all of the crazy testing and having symptoms and feeling like crap, my sister used to say I had MAD, or Mad Asshole Disease. It's kind of an all purpose diagnosis. I just didn't want the word asshole in the title of the blog, even though I talk a lot about it IN the blog. Asshole asshole asshole.

But AAC is really more applicable, because if you think about it, the ravening hippos are like the different parts of my life fighting for the limited amount of resources (energy, really) I have available to devote to them. One hippo is Crohn's, one is my social life, one is my personal life, and one is my work life. Right now, the kid playing the Crohn's hippo (stay with me here) has the most skills: that little bastard is hogging all the balls (ha). He's fast.

Hopefully there will be a time when the other hippos get a few more balls (ha) sent their way. When things balance out and every hippo has a fair shot at the prize. Unfortunately, right now, it feels like the other three hippos are muzzled.

While you ponder what board game best represents your life, I am going to go put an icepack on my face and try not to throw up.

Post #27: Behind the curtain (it's messy)



I don't know people who wear buttons, but this makes a point. Also, I distrust people with "hilarious" bumper stickers.

So apparently, Crohn's is considered one of them fancy "invisible" illnesses, like Lupus or Fibromyalgia (know right now that I am not comparing my Crohn's, or Crohn's in general, to either of these two diseases).

My AAC, thankfully, is on the inside (that would be gross otherwise). I was thinking about what I did today-a jaunt through the farmer's market, a trip to the thrift store, a stop at the grocery-and how to anyone walking by, I looked.....average.

What people didn't see, however, was the ruckus going on behind the scenes:

7:30: wake up. look at clock. try to muster enthusiasm for rising. still tired after full night's sleep. promise self waffles.
8:00: get up, stretch, yawn. beginning of cramps. contemplate laying in bed until have to go to the bathroom.
8:30: Checking email, eating waffles. monitoring colon. still tired.
9:00 first BM of the day. normal! would do small victory dance if not so exhausted.
10:00: must. not. take. nap. watch TV, try not to fall asleep.
11:00: must. not. take. nap. watch shows on DVR.
Noon: more rumblings down under. drink water. must. not. fall. asleep.
12:30: lunch. carefully consider the merits or 2 vs. 3 slices of spelt bread, as the difference could easily tip the scales between bowel regularity/explosion. decide to live on the wild side and have 3. remember to add protein, b/c without it I would be more tired. not that hungry or excited to eat but go through the motions.
1:00: craft time! weather is steamy, making me more tired. Try to focus on wire wrapping and fine motor skills. promise myself I just have to make ONE THING and then I can take a break.
2:30: made TWO things. feel dizzy and tired. having cramps? does this mean I have to stay in for the day? I made afternoon plans. consider crawling into bed and playing the sick card.
2:45: laying on carpet. feels good. beginning of cramps, but no action. must take shower. must not nap. promise myself that if I shower, I don't have to wear a real bra (sports bras 4ever).
2:47: still on the floor. very very tired.
2:50: I AM GOING TO SHOWER MOTHERFUCKERS.
2:55: In shower. hot water makes me tired. decide to go ahead with afternoon plans even though I want to get into bed and read (and take a nap).
3:15: all clean and ready to go. take orange juice in a to-go cup b/c the sugar will perk me up.
3:30: parked close to the market, near a bathroom. walking around farmer's market. I'm tired, don't really want to be here, but the distraction is nice. sample gluten free pumpkin bread. very bright. think jealous thoughts about the people lined up for salted caramel ice cream.
4: at thrift store. wandering the aisles. hard to keep focused. tired and thirsty. rumblings.
4:30: grocery store. decide to stay in car.
5: second BM of the day, also normal. small cheer.
5:05: MUST.NOT.TAKE.NAP
5:10: play online game. drink water. so drowsy.

This is an extremely abbreviated version of today, with the times all wrong, now that I look at it. It's tiring to even read it, much less live it. Everything takes two steps: the mental and the physical. The will to act and the act itself.

Like a stage production, my days can be separated by what happens on the stage and behind the scenes. On stage, I try to look normal, fit in. I try to listen to what people are telling me, to engage, to be funny. Like a professional, I try not to acknowledge the occasional sounds from behind the curtain. If the noises get too loud, I'll raise my voice so that my audience won't notice them.

Behind the scenes, chaos. An ongoing litany of concerns and rituals, worries and fears. What did I eat? Did I eat too much/too fast? Did I eat something new? What will happen? Was there enough protein? Was there too much fat? When was the last time I went to the bathroom? Where am I going? What am I doing? Where will the bathroom be? Is my cellphone charged? Do I have my Imodium just in case? How much time will I need to get ready? Should I take a nap? Should I make myself stay awake? Will I find something to eat at the restaurant?

And so on, etc.

It makes me think: what would happen if the curtain went up? What would happen if people could see the AAC beyond the facade? Would they still ask how I was feeling? Would they still say I "look great?" Would they ask, for the 10th time, why I am tired? Would they still be disappointed when I canceled or changed plans?

People have, in general, been understanding and kind. But I'm not sure they really have any idea about what's going on behind the scenes. And I'm not sure that I'd want them to have an all access pass to the show.

Post #26: In my movie, I get to eat DAIRY

Does this exist?! Because it needs to exist.

I had this idea that I would make Friday's a Crohn's free zone, and post on current events or celebrity pregnancy news or the current color of my hair (it's back to brown. yeah!). But I don't get a Crohn's free day, so why should my blog? Screw you blog (just kidding blog, I love you).

Day two of the taper. I had the most normal BM I have had in like three months today. It was so normal, I kind of looked around the bathroom to see if there had been a drive by pooping from a super-regular elf, but no! I even ate out the night before.

I was going to write that memory is flexible, but I don't think that's quite true. I think that we are selective about our memories, sometimes remembering the truth, other times putting together a "best of" reel compiled from snatches of reality to suit our dreams for the future. My montage features me running through a field, with boundless energy, to a restaurant where I order a hamburger and fries and a malted chocolate milkshake. The waitress tells me that all of the bathrooms in a one mile radius are closed for repair, but I shake out my long, luscious hair (it's effortlessly curled, the "beachy" hair that you can't actually get at the beach) and laugh with abandon. It's fine! I'm regular! I CAN HOLD IT.

Anyway. The point is, it's so easy to adjust to a few goods days, and forget the weeks that came before. Before you know it, you're playing your fictitious montage and ordering that milkshake (MISTAKE). It's easy to forget the lessons you JUST learned, and eat a giant bowl of corn pasta with green beans and feel it sitting in a giant ball in your stomach. When you roll that movie, it's really hard to accept reality when it inevitably returns, or when your AAC comes out in full force.

In other news, corn pasta is my new thing-brown rice pasta is always mushy, but corn pasta holds its shape and remains al dente. Also, whereas brown rice pasta has the color (and texture, and taste) of wallpaper paste, corn pasta remains defiantly yellow even if you boil the shit out of it. I was eating pale foods for so long (breadbreadbread) that it's still novel to see and consume vibrant colors.

This was kind of a random, scattered post, but that's where I am-straddling the divide between actual memories and celluloid dreams for the future.