#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 #16: I miss Salad

This is not me, but this is how I feel about SALAD.

When I googled "salad is evil," there was this full on glamour shot of Richard Simmons with kale and Boston bibb and cabbage covering his naughty bits. I would have put it here, but it was too horrifying. You're welcome.

In the battle between salad and my AAC, guess who won? If you guessed my AAC, I thank you for your confidence, but you are WRONG. Salad kicked my ass. Arugula, more specifically. And it wasn't even a whole salad!

There is this hippie-crunchy restaurant in town that serves what they call a "garden bowl." It is essentially made out of anything green you can cut up/tear into pieces with some carrot and cabbage shreds, sprinkled with soy nuts and sunflower seeds and topped with a big halo of sprouts, which I don't eat because:

1.) I read one two many stories about them being contaminated by e. coli

2.) They remind me of public hair.

3.) They taste vaguely like dirt, but mostly for reasons 1 and 2

MOVING ON, in the good old days I used to go to town on that salad. It was just the right combination of healthy and delicious, with a perfect mix of textures. I shudder to think what that would do to my AAC if I were to eat it now.

Post #15: The one where I eat some salad

Today's exciting challenge: my colon VS. arugula

I have eyebrows again! There was a Russian lady at Clinique who drew them on for me, and said, "I used to have a problem with plucking too." ha.

But this is a post about eating, not tweezing, although I guess they are both compulsions of a sort (awesome transition? check). Crohn's, and IBS (to a lesser extent) have led me to have kind of a jacked up relationship with food. I used to eat for pleasure, for comfort, for fun; food could be soothing, or exciting, or challenging. It was about discovery: finding the BEST place to eat banh mi sandwiches, or seeing how much heat I could tolerate at the sushi bar, or discovering that when it comes down to it, no, I don't enjoy the iron-y tang of runny egg yolks and prefer my eggs cooked to the point of crunchiness. Food was also about connecting: a way to cement friendships, a way to break the ice when meeting new friends, or dealing with difficult family. Right now, when the weather is nice, I think about summer foods: the taste of freshly made pesto, the squeak of fresh mozzarella against your teeth in a caprese salad, the sweet cool lushness of mint chocolate chip ice cream pooling in the bottom of a crisp cone.

I don't eat those things now. And, until I stopped eating out as often, I never realized how much of my social life revolved around the sharing of good food. For me, food has become about safety, not about taste. It's become personal, and not social. My dietary restrictions are self imposed, the result of years of trial and error. I know that cheese is not my friend. I know that fried foods make me sick in a specific combination of heartburn and nausea that is usually not worth the few minutes it takes to eat fries or a donut.

Knowing how things will effect your body, however, and choosing to avoid those reactions are two very different things.

Today I went to a restaurant I used to go to a few times a month. They have great sandwiches and they serve you warm sourdough bread before your meal, and chocolate mints after. I was there today and had the chicken paillard, which is essentially a piece of chicken that someone has pounded the shit out of and arrange artfully on a plate. It also comes with accessories: a giant steak knife (although the chicken is like 1/8 of an inch thick) and a lemon encased in yellow cheesecloth, tied with a green string. At this restaurant they put a little pile of arugula and red onions and tomatoes on top.

I ate the whole freaking thing, and it was delicious. As I cut the salad into little tiny pieces with my giant manly steak knife, a part of my brain was shouting "alert! alert! raw greens! fibrous raw GREENS! abort consumption, I repeat: abort consumption."

This is not the most relaxing inner monologue to have at a restaurant, and the outcome of this meal remains to be seen, but when I walked out of this restaurant after cleaning my plate (and not feeling sick) I did feel a little triumphant, like I had claimed back a little of what I had lost.

Post #14: Colon Firth

Someone nicknamed their AAC "Colon Firth." I am ridiculously jealous that I didn't think of this first.

I was just re-reading my post from yesterday, and......sorry, got distracted for a moment by the dreaminess that is COLON/COLIN FIRTH. gah.

Anyhoo, I was thinking about it, and I realized one of the things that sucks about waiting: the utter passivity of sitting around, or putting plans on hold, while you wait for someone (the doctors!) or something (my AAC!) to make important decisions about your life. This passivity sucks for several reasons, which I shall now list:

1.) I try not to be passive. It makes me feel like I don't have options/a voice.
2.) There is no endpoint for all of this waiting. There is not a clear timeline for action of any kind.
3.) Eventually, being passive about this makes me more passive about other things in my life.
4.) Human beings are adaptable, and this passivity feels normal. I'm in kind of a holding pattern here, and I've become used to it. I don't think I'm as concerned or angry or aware of things as I should be.

I just got my work schedule for the fall, and while it sounds manageable in my head I'm completely freaked out about making a commitment of any kind because I just don't know what my situation will be like in three or four months. I don't know if I'll be able to teach morning classes. I'm scared of getting sick there, of getting overwhelmed, of causing or having to work through a flare.

During the whole diagnosis process earlier this year, as my symptoms were getting worse, I basically held my work life together with Luna bars, lemonade Gatorade, and denial. I was slogging through three hour classes where I often felt dizzy or sick. I didn't have the energy to deal with my students. I couldn't remember details, and my mind didn't feel sharp. Eventually, after many sick days, I was at work and almost passed out in a computer lab. That weekend, after a visit to urgent care and three liters of fluid, I still felt sick, and I knew it was time to take a leave of absence. Everything just caught up with me at once. It was a crappy decision to make, but I had to do it. I don't want to put myself in the same situation again, even though I have more information now and some new medicines to throw at my AAC if things get out of control.

But what I'm realizing is that I am going to have to be the one to make decisions about what happens next, and I feel like I'm throwing darts at a dartboard. I don't have a crystal ball up my ass that can tell me what comes next. Which would be awesome.

In other news, even before I got my schedule, I was apparently more stressed out than I thought. My stress level has a direct correlation to the thinness of my brows, and last night I plucked those mothers into a fine, fine line. It's not a cute look. With my glasses, I think I look owlishly surprised all the time. I am calling a moratorium on plucking for a good two weeks, b/c at this point I may as well just shave them off and draw two wonky lines that aren't level BECAUSE THAT IS WHAT IT KIND OF LOOKS LIKE ANYWAY. The right eyebrow is higher....it's a thing. Luckily, there is a Clinique bonus going on, and besides being a bonus whore I now have a sudden need for emergency eyebrow resuscitation products. Silver lining!

Post #13: Playing the waiting game

If you want a clean colon, you could buy this hot sauce. Or, you know, get Crohn's.

Day whatever of the taper. Day whatever of "cutting out white stuff."

I realized today just how much of my life I spend waiting. First, I waited years to get this diagnosis, all the while worrying that something more serious than IBS was going on (and I was right! whoo hoo!). When I was nauseous all of the time, I would wait for it to pass so I could go to class or go out with friends. Sometimes it would, and sometimes it wouldn't. I wait to have bowel movements, I wait to pass gas. I wait to see how different medicines (so many medicines over the years-I have a prescription pill graveyard in my bathroom) react with my body, I wait for bad side effects to wear off, I wait for test results, I wait for doctor's appointments. I wait in waiting rooms, I wait to get my blood drawn, I wait in line at the pharmacy. When my feet cramp up from dehydration, I wiggle them and wait for my toes to straighten out. I wait for my bowel to empty before I go about my day. When it feels like my bowels are twisting themselves in knots, I wait for the pain to pass.

I wait until the last minute to cancel plans, because I hope I will feel better. I wait for my friends to call me, because I don't really want to call them. I always seem to have the same news to share. When I go out to a restaurant, I nervously wait for the waitress to take my order, because I know that I'm going to be "that girl" who asks for everything plain and on the side. I wait for things to get worse, or get better. I wait for the day when I don't have to think so much about food. I wait for the day when I don't need medication, although I'm not sure that day will ever come. I wait for a time when it doesn't matter if I'm near a bathroom.

When I tell people I have Crohn's, I wait for their reaction. Later, I wait for my reaction. I wait for my emotions to boil over or harden into cool, familiar anger.

Someone today asked me if I was bored, being home all day, and I said yes, but I think I'm really sick of waiting all of the fucking time. I used to feel, when I first started feeling sick, that I was "waiting for the other shoe to drop." I was waiting to hear the bad news. I've heard it now, and it doesn't bring relief, this knowing. I feel like there are now a thousand other shoes waiting to drop.

All of this, the tapering, the diet, the supplements (which I am still waiting to take-my specialty....) is a ploy to buy me some time to make my next treatment decision. I know that. I decided that I would let my symptoms dictate the next course of action, thereby taking the decision away from me. And now, everyday, I have to ask myself, was this day bad enough? Is it time?

I'm still waiting for an answer.

Post #12: Insert clever title here

Because after your colon has therapy, it might need a cut and a blowout. Also, this place looks SUPER REPUTABLE.

Today was weird. I'm not working right now, and so my schedule is pretty open. I can do things around my various doctor/health related appointments, or not. I can go places, or not. Life is pretty small for me right now, as it is concentrated around my house, my bathroom, and more specifically my AAC. Sometimes when I talk to people it's like I've forgotten the normal cadences of human conversation. I find myself having these really disjointed, train of thought exchanges, and I can tell that the other person feels that the situation is off, but can't pinpoint why. My brain is just processing information more slowly, and I know that it is, but it's hard to pick up the pace mid speech. I don't know. Everything feels kind of fuzzy sometimes, like time has slowed down.

As I sit here writing this, my mind was wandering (as usual) and I realized that my stomach is gurgling and flexing. I don't think this bodes well for tonight.

Not that my AAC needs a reason to be pissed, but today I ate a metric ass load of food. I was just really hungry. This doesn't mean I wasn't feeling sick-just that the hunger overrode the nausea. People have a hard time understanding how someone can eat when they simultaneously feel queasy, or tired, or gassy, or sore. I guess it's just that when these symptoms are present all the time, it doesn't send out the normal messages to your body telling it to go into self preservation mode, to rest and eat soup and nibble on plain saltines. There's no reason to fear the fire alarm if there's a drill every hour, on the hour. You get used to the noise.

And so, today a mixture of intense hunger with interludes of nausea. And now, churning. It's a good thing I realllllllly enjoyed all of those popchips and avocado hummus.

Post #11: Today, Crohn's is a pain in my side

Yup, that's about right.

Ok, this is funny only if you've been to a doctor's office recently and seen the pain scale they have there. It's for kids, which makes it extra sad I guess, but they have a scale from a smiley face to basically a crying Mr. Yuck sticker. I think this adult version more thoroughly expresses the pain situation, which is kind of what I'm dealing with. I'm at a 3 now-kind of a lingering ache, like an organ hangover.

However, last night at around 2am, I was a 5/6. Whenever pain wakes you up in the middle of the night, it's never a good sign. I did go to TJ's yesterday, and I MAY have become overexcited about having things to eat that actually have flavor and MAYBE I overdid it with the avocado hummus but STILL. Nothing crazy, nothing huge. I didn't decide that things were super stable and book it to Old Country Buffet and eat my body weight in fried chicken and shitty pizza and shrimp scampi (I've never actually been to Old Country Buffet, but I'm pretty sure they have those things).

All of that night time pain translated into a super fun morning of cramping and colon explosions. My side is still pretty tender. I ate food today, so I'm kind of dreading tomorrow morning. This week was about starting the taper, and tomorrow, I add in all the shizz the asshole naturopath gave me-fish oil and multivitamins and vitamin D and iron (all approved by my actual doctor, natch). All told I think this adds 10 new pills to my regimen. I'm not sure if any of this shit will help, but now seems like as good a time as any to throw more stuff on the pile. I'm hoping I don't notice a difference, although I'm kind of worried about the fish oil pills. I'm nauseous already, and the last thing I need coming up the pipeline is rancid salmon juice. However, the bottle says these ones are "lemon flavored," so maybe they'll just taste like Lysol instead. Adventures!

Post #10!!

It's true! And then I also burst out into a rousing version of "YMCA."

As those stupid Activia commercials prove, I am not the only American obsessed with regularity. Side note: why did Jamie Lee Curtis sign on to become to face of the regular bowel? Did she not save any money from True Lies? Was her career so slow that she thought, hmmm, you know what would really get my face out there? Becoming the spokesperson for POO YOGURT.

The worst part about those stupid commercials is that Jamie Lee Curtis is like the mean girl of the colon crowd. All of the commercials are the same: Jamie shows up with her aggressive pixie cut and condescending smile and visits with three friends. Two of the friends are POO YOGURT CONVERTS, and together they all bully the third friend into joining their cult of regularity. Now, I'm all for taking charge of your bowel health, but do you really need the chick from Freaky Friday harassing you about you poo? I think not.

I tried Activia a few times, and it caused my AAC to freak out (more than usual). It's like a super fast acting, vanilla flavored laxative for me. Anyway, I do understand the desire to KNOW when your bowels will be moving in a given day. It would be great to schedule a convenient time with you bowels to spend some QT in the bathroom:

Me: bowels, I have to go to work at ten. Could we get this party started around 8?
Bowels: 8's not so great, I want to sleep in. Had a rough day yesterday. what about 9:15?
Me: Are you crazy? I'll be in traffic! Could you do 8:30?
Bowels: 8:30? With that giant burrito you ate? I'm not a magician here. I could mayyyyybe squeeze you in at 8:45, but I'm going to make you fart all morning.
Me: It's a deal!

Alas, I don't have a consistent schedule, and I have no way of discussing this schedule with my body. It decides when and where and how often and how much. With this tapering/new diet going on, things have become even less predictable, although there are still warning signs. Before, when I was first diagnosed, everything would empty in the morning, and that was that. Yes, it was painful. Yes, it made me dehydrated and cranky and weak, but I knew I was done for the day. Now, things are more ambiguous, and different day to day. I certainly don't miss the symptoms, but in a way it was easier to make plans or even deal with the idea of Crohn's itself if you could count on a bad hour or two in the morning and then relative quiet for the rest of the day.

Now, I find myself constantly scanning my body for signs. Is that gas? Is that bloating? What hurts? Where does it hurt? Do I need to worry?

All of the new foods add another layer of crazy to the mix; now I have to gauge the reaction to each food, and then make a mental note to file away about what it did to my body. Example: I'm on a spelt kick (it's still wheat, I know, but it's not white flour and even some people who are gluten intolerant can eat it....whatever), and I bought some bread that had all kinds of seeds and nuts on the crust.

Long story short: seeds and nuts are not friends with my AAC. Today I ate the breads with the crusts cut off (like tea sandwiches!) and it was better received. Now imagine going through this same trial and error process with every new food you want to eat beyond the 10 on your "safety list."

I need some regularity and consistency here-where is Jamie Lee Curtis when you need her?!

ps: This is my tenth post! On ebay, when you buy 10 things, they give you a GOLD STAR. Step it up blogger.

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.

Post #8: sharing is caring

And when they get there, I'm usually in the bathroom.

So.....ironically, I was on FB reading a post about how this college friend might have UC, and was in the hospital, and I thought to myself, well, she has REAL IBD, she has proof, people know she's sick.

And then I pooped on the couch.

There is really no delicate way of saying that. It wasn't really a delicate situation. It was only a little bit, but it sure shocked the hell out of me. There I was, watching the View, having some cramps/gas but nothing major, when HOLY CRAP WHAT WAS THAT. I did a super exaggerated cartoon rabbit leap from the couch and sprinted to the bathroom, where, what do you know? Proof. I had my first accident.

For a germ freak like me, this was a CODE RED situation. I'm listening to the machine machine churn as I type this, where I am bleaching the hell out of clothes that aren't white. The crafty part of my brain was like, get some rubber bands and artfully tie them around your poo pants so the bleach causes a kind of tie dyed effect! While the OCD part of me was busting out the Clorox wipes and huffing the fumes and planning on wrapping the evidence in like 10 hefty bags and pretending this never happened. I did a sprint of shame upstairs and showered as quickly as possible, because I could feel round two churning away in my AAC, and I didn't want to have to clean the upstairs bathroom too.

As I was scrubbing away, I had a predominant thought: this is no way to live.

It's been three days since I cut my dose of steroids, three days where I've been eating things my body is apparently not ready for. I could blame one or the other, but something isn't working. I'm going to give this varied diet/tapering shit two weeks, but if I still feel this sick after that I think I have to face the reality that I might need the super-scary cancer drug. I want the consistency I had on the steroids back. I want to be able to pre-plan activities and not wait for my colon to decide what I'll be doing and where I'll be going. I don't want this pain, and I certainly don't want a repeat of this morning.

Since my IBS days, I've always carried an emergency kit in my car. When my sister was visiting, my BIL found my Nordstrom bag (what can I say, I'm a classy lady) with underwear, jeans, wheat thins, and Gatorade in the trunk of my car and I was embarrassed for a second before realizing that the more embarrassing situation would be being without those things if I needed them. Which apparently I might now.

My hands are tight and shiny from all of the hand washing I've done in the past few days. If this keeps up, they'll look like they used to, pre-steroids: dry, red, angry, shriveled, with knuckles cracked and bleeding. If you go to the bathroom a lot, you wash your hands a lot, to the point that neosporin is more useful than hand cream. I don't want to go back there.

Now if you'll excuse me, I am going to go order myself a nice present from the Internet, because I've had a really shitty morning.

Post #7

This is not where my colon would live. It would probably live in a haunted house. 

So, day 2 of le taper. I'm not sure if I'm going to have any idea of how my body is reacting to the change for a few more days. I think the bigger issue is the new foods I've been introducing into my diet-fruits and vegetables and spelt, oh my!

This whole industry around gluten free-the proliferation of breads and chips that take up more and more real estate on the grocery aisle-is kind of astounding. If your body can truly not tolerate gluten, if you're diagnosed with celiac or an allergy or even if you feel you have an intolerance/sensitivity, then I'm glad you can now buy gluten-free brownie mix at your local grocery chain. For my purposes, in wanting to cut down on the inflammation caused by white flour/sugar, I'm not necessarily convinced gluten-free is the way to go. Is trading white flour for white rice flour really that much of a step up? Is it that much easier to digest? Wouldn't eating whole wheat flour accomplish much of the same thing (since as far as I know, gluten and I get along)?

Don't get me started on sugar-is brown rice syrup or organic cane sugar or any of that crap superior to normal sugar? I know that HFCS is the devil, etc., but anyone who does a few laps around Whole Foods knows it's entirely possible to have organic, "healthy" junk food.

And the YOGURT. I don't eat dairy, but it is now possible to get soy or lactose free, or goat's milk, or even freaking COCONUT yogurt. And then there are a myriad of flavor choices. Some of them have sugar, some of them just look gross. And what the fuck is kefir?

All of this is to say that I am thoroughly confused about what to stuff in my face for breakfast, lunch, and dinner. I have no one guiding me in this pursuit-I have books (I bought more books yesterday, in fact!) that say different things, and for each website I find that gives one piece of advice, I can find two to contradict it. My doctor-doctor says diet doesn't really play a role in Crohn's treatment. My asshole naturopath, of course, completely disagrees, and just told me to stop eating all carbs completely without pointing me towards any resources. I know there is no specific diet for Crohn's, but I WOULD REALLY LIKE FOR SOMEONE TO JUST TELL ME WHAT TO EAT.

Just after I was diagnosed, I went to see a nutritionist, who put me on a super low fiber diet. Lots of white stuff involved. I brought with me a list of my safety foods, most of which were carbs. That was all I could tolerate at that point, but I kind of want to test myself and see if I can eat pretty much any food you could buy at a farmer's market. Since I've strayed off the list, though, I have less predictability in my day, bowel wise, which is restricting my activities somewhat. For now, it's kind of a no-win situation. I'm spaced out and tired, but my system seems to be tolerating the new foods, and in the long run I just don't believe that a steady diet of white bread and Gatorade is going to help me get my energy back.

In other news, I read somewhere that today is National Hummus Day. Hummus is a major food group in my diet, and I think my body composition is approximately 2.5 percent chickpea. Thank you hummus, for always being the one "fun" food on my safety list. You have never pissed off my AAC, and for that I am grateful.

Tomorrow: adventures in gluten free baking (hint: it's mostly edible!).

ps: Why does spell check recognize the brand name "Gatorade" and not "Crohn's disease?" CONSPIRACY.

Post #6

Like this soccer coach, I also assumed the position today.

Sigh. Day one of taper: not a success. I'm not sure I can blame the meds for this, but for the first time in a while I woke up with that familiar nauseous feeling, followed by pain and cramping, followed by....well, I'm guessing you know what comes next.

It's ONE day, I know, just one bad day, but it's still a shitty (so true) way to start the day. I've been nauseous after every meal today too. I started the whole "no white flour/no white sugar" thing-I'm still questioning why I'm doing this (it's anti-inflammatory! carbs are evil! the naturopath told me to!), but if nothing else it will force me to wean myself off bread to some extent. I went to Whole Foods and bought a lot of products that involve spelt, and some gluten free shizz. I ate some vegetables at lunch and again at dinner. I've been sitting here watching TV on mute and waiting for my stomach to decide how it feels about brown rice, asparagus, and salmon.

On the one hand, I want to start eating less like a sick person. I need nutrients. I'm bored with the foods I've been eating, and I know that I need more variety. On the other hand, I don't want to piss off my AAC.

One of the things that happens to me when I have a lot of diarrhea (I think this is the first time I've mentioned the word on this blog, but it probably won't be the last. Huzzah!) is that I spend the rest of the day in a fog. Mentally and physically, I feel depleted. It's similar to the experience of driving home from work after a long day and suddenly realizing you're in your driveway, but not really remembering all the details of driving there. You're on autopilot-the animal part of your brain is driving the car: foot, brake, foot, gas, check mirrors, turn signal, brake, merge, don't speed, don't speed, brake, gas, brake...you're in control but you're not connected. You do what you need to do but without finesse or awareness.

I went out to lunch. I went to the library. I did some shopping. I visited a neighbor. But I was so mentally disconnected from these tasks. I was nauseous and tired and trying to gauge my system's reaction to the things I was feeding it. I took a two hour nap today because I needed to, not just because I was a little tired. I hate that.

I should probably start back up with the food/symptom diary. For about a month and a half, right after I was diagnosed, I kept track of EVERYTHING that went in and EVERYTHING that went out. It was color coded, yellow for bad symptoms (pain, gas, bloating, colon explosions) and green for good (normal bowel movements!). The printout looked like it had been mauled by a yellow highlighter. I would drag this thing to every doctor's appointment, because I got so sick of describing my symptoms and their frequency.

It made me feel like a lab rat.

I really hope that my system can accept the new foods I'm going to introduce. Right now it is making sounds of protest, but there's no pain. So, it's back to keeping track, of watching my AAC like a nervous stage mother. Back into the unknown. Hopefully not back into pain and fog and exhaustion.

Post the fifth!

Haha angry bread. NOW GET IN MY BELLY.

So: tomorrow I taper. Two pink pills instead of three. Things have been quiet this week, and it's so hard for me to contemplate altering this fragile state in any way.

The weather here is gorgeous-close to 80 degrees but not hot, with a soft breeze that smells new and clean, like sunshine and blooming plants and dirt. It makes you want to close your eyes and tilt your head towards the sky so you can feel it glide over your skin. Neighbors are starting to BBQ, and when I went to run errands this afternoon my car was hot inside when I returned. I'm not sure why this made me happy, but it did.

Now things will start to change again. Maybe things will stay the same; I don't know what will happen. But it's been a while since I had a good week, so I'm appreciative of the interlude, however brief.

Tomorrow I go to Whole Foods and stock up on some less carb-tastic basics. I'll start taking fish oil, a multivitamin, iron, and vitamin D. When I was first diagnosed, I bought this weekly pill container, because at that time I was taking 14 or 15 pills a day, but I resisted using it because that would mean I was "sick". Tomorrow, I'll fill it with up and actually use it. I will TRY not to turn to Dr. Google to read about any discontinuation horror stories. The one thing my actual doctor did mention was that some of his patients had "trouble regulating their body temperature" as they tapered off the steroids.

I have no idea what that means.

The only thing that comes to mind is how some pugs and bulldogs simply cannot tolerate extreme cold or heat. My neighbors just got the most adorable bulldog puppy, and he has about 15-20 minutes of exertion in him before he simple drops, panting, and stretches out all of his legs, like, "I'm done bitches!" He then must be picked up and deposited on the couch. I was out shopping and I saw a "cool pad" summer dog bed, which is essentially a giant ice pack.  If for some reason I start to get hot flashes, I fully intend to purchase one of those dog beds and roll around on it in the middle of the living room. And if anyone complains, I'll just be like, "Bitches, I am DONE." I'm not sure how this will work if I happen to be in the  middle of Target when I get a flash, but I'll see how it goes. That is probably where I would buy the bed anyway.

I'm off to finish wrapping my mother's day present-I actually got my shit together to buy stuff (which is a bigger deal than it sounds like).

I am going to sit outside and try to think happy tapering thoughts while I enjoy the sun, even though it makes me freckle like one of those spotted chicken eggs in the Clinique "before" advertisements. The neighbors are barbecuing, and I want to smell all of the delicious meat that I can't digest right now.

Post 4: Brought to you by Tom Sellack's sexy sexy chest hair

Tom thinks I should stay on the steroids FOREVER. I love you Tom, you sexy beast man.

Oh Google. My favorite part about this picture is that Tom (we're tight) apprears to not be holding an old school cell phone, but a regular phone that has just been unplugged from the wall.
So......tick tock! What's that sound? The sound of IT'S TIME TO START TAPERING OFF OF STERIODS. ugh. I would be lying if I said I wasn't concerned about tapering down-the steroids have....worked. On Monday I will start taking two pills instead of three. And then next month, one pill instead of two. What happens during this process will determine my next steps. I am really, really trying to avoid taking what I refer to as the "super scary cancer drug," which in reality is just an immunosuppresent. With an increased risk of developing cancer.

What is super frustrating to me is that there is really no good way to determine what's going on up in my digestive business. Sure, the symptoms are better, but, as the stupid drugs ads remind me on TV, am I still subject to DAMAMGING INFLAMMATION (cue horror movie music)? Apparently, it is possible to be asymptomatic and still have bad things happening in your colon, which is the rationale for going on the scary drug, which just kind of puts a damper on whole "your immune system attacking itself" thing. I really wish that there was a little porthole on my side, so I could peek in and determine the state of things.


So as I taper, I'm going to add in some vitamins/supplemants and go off of white flour/white sugar. I went to a naturopath (who is supposed to be THE GUY for IBD patients in my town) who wanted me to do the SCD (specific carbohydrate diet). Like the good little soldier that I am, I promptly bought the book and several cookbooks that rely heavily on almond flower. I read through it, and I don't think it's for me. Maybe it's my distaste for this particular naturopath (again, another post!), maybe it's my general disbelief in anything promising to "fix" or "heal" a chronic condition, or maybe it's just my reluctance to eat bone marrow and make my own cheese, but the whole process seems unsustainable for me. However, avoiding the white stuff seems doable and healthy and might help wean me off of bread, which is like my crutch in this whole shit storm. There were months where I was living entirely off of white bread, hummus, and lemonade gatorade (yum!). They are my security blanket and culinary happy place.

I'm going to try adding in some new foods and TRY to bust out the (cooked) fruits and vegetables. Granted, if my symptoms come back, I might curl up into the fetal position with a dozen bagels and a 15 lb. bag of white sugar, but I'll give it a try. That seems to be all I can do as I look forward to the next few weeks: try something new, see what happens, wait and see, adjust accordingly.

I hate uncertainty.

Post the third! (has nothing to do with cows)

Haha, cow butt. Thanks google!

Do you know what's hard to have when your head is permanently shoved up your ass, worrying about.......your ass? PERSPECTIVE. Today was a day of little reminders that I am lucky, in so many ways, in terms of my health. First, I have a support system. I came home to a message from someone just "checking in" to make sure I was still kicking. It was low key, just "call if you need anything," but it was very comforting. I have people.

Second, I have health insurance. Granted, my entire tax refund check is going to fund a colonoscopy that I had 4 months ago, but I'm still paying about 1/4 of the total amount. The steroids that I'm on right now? According to the printout from the pharmacy, they cost over a thousand dollars. PER MONTH. I have a ten dollar co-pay. Every time I pick up a new med, I think, how do people without jobs or insurance or savings pay for this? Thank you, insurance. If everyone were "forced" to buy you, more people would have access to the aforementioned expensive drugs! But that's another post:)

I was at B&N and ran into a co-worker in the parking lot. She was holding the tiny, chubby hands of her toddler high above his head as he lurched towards the store, taking giant unsteady steps. I stopped to say hello, and she introduced me to her parents; her father didn't have the use of his right hand, and while I aborted my handshake into an awkward wave he was fixated on his grandson's progress, his face both sad and proud. At the grocery store, a woman with a limp navigated around the bread shelves in the deli, pushing forward to get a free sample, and then another. An elderly man took excruciatingly slow steps to the exit, and as I darted around him to hurry to my car I saw his wife waiting on the corner, holding out her hand. He helped her to their car. He was the steady one.

People went about their lives with their imperfect bodies.

I am often annoyed that people cannot see my illness, and so in a way it doesn't exist for them. When I meet up with a friend, I hear, "You look great! You're lost weight!" and while that's nice to hear (I guess?) it seems to me the unspoken thought that accompanies that statement is "so you can't possibly be that sick!" Yes, I'm overly sensitive. Yes, it's easier to nitpick the trivial comments of others and deflect my anger onto the people and words that really have nothing to do with my condition. Yes, the steroids make me (more) emotional. But sometimes I just want to wear a t-shirt that says, "I spent the morning on the toilet and I'm tired and I feel like someone sucked all of the energy from my body with a giant straw so could you please cut me some slack?"

And then comes a day like today, where I see people all around me living their lives and interacting with people without the aid of a non-catchy semi-horrifying t-shirt. I guess I do the same, and in some ways I blend in as "normal" even if I feel anything but. It's a kind of invisibility that can be lonely. But for now, for today, I am going to try to focus on the lucky part, and to wedge my head out of my AAC.

Post the second!

Dude, I have CROHN'S, not crabs. One problem at a time.

Instead of finding pictures that actually correspond to my posts, I've decided to showcase some of the random pictures you get from google images if you look up "angry colon." Example A above.

So, since I'm only about 2 months into this diagnosis (the angry phase!), I spend a lot of time medically outing myself to friends/family/neighbors/acquaintances/nosy Walgreen's pharmacy minions. I find that people fall broadly into the following categories:

1.) The Minimizer

Me: I have Crohn's.

Person: Oh, that's no big deal. My sister's mother's cat sitter's uncle had that, he was fine. Lived to be 160. Skydives every October! Just climbed the Matterhorn! You'll be fine!

Ok, first of all, it's a big deal to me. My colon is angry and covered in ulcers, SHIT JUST GOT REAL. Unless you shoved a periscope up my ass while I was sleeping, you have no idea if I'm going to be just fine today or in the near future or in the future future. Also, just because one person with whom you have the most tenuous of connections is living with Crohn's and healthy as a horse is not encouraging to me, as Crohn's is different for each person, and WE ARE NOT THE SAME PERSON. Also, I was not really into extreme sports before the whole Crohn's thing, so unless my ass ulcers have endowed me with super special fitness juice, I'm probably not going to show Crohn's who's boss by jumping out of anything. Just FYI.

2.) The Grim Reaper

Me: I have Crohn's.

Person: Ohhhhhh, I am SO SO SORRY. I knew this guy once who had Crohn's and he was in and out of the hospital EVERYDAY. And then his colon fell out. And his wife left him. You know, b/c of the fecal incontinence. Did I mention his colon fell out?

Um, HOW IS THIS HELPFUL OR ENCOURAGING TO ME IN ANY WAY?! Asshole. Feel free to put that back in the "things I can think in my head but probably shouldn't say out loud" box and stow it. ugh.

3.) The Fellow Patient

Me: I have Crohn's.

Person: Oh, I'm sorry to hear that. You know, I went through something similar last year. I was biking to work when I spilled my latte, and I veered into oncoming traffic and totally messed up my leg. They had to put pins in and then I went through 6 months of physical therapy, so I know what it's like to be under the weather. Don't worry, it gets better!

Yeah, so I'm super glad your leg is all functional again and shizz, but your leg is now fixed: MY COLON WILL NEVER BE FIXED. I'm sorry you went through a distressing medical experience, but your distressing medical experience had an endpoint. Mine doesn't. Yes, you may be able to empathize about how an illness gets in the way of everyday living, but please don't equate our conditions. We both have bodies, hooray! That doesn't mean we have some innate understanding of the other's process. Plus, and I know this is hard to process, but this isn't about your shit, it's about mine (literally!). Let's not exchange horror stories about our disgusting bodily functions and become besties, K?

4.) The Comedian

Me: I have Crohn's.

Person: Dude, that sucks. Guess you won't be going on any long car rides huh?

Ha ha! Oh good sir, I heartily laugh at my own expense to assuage your discomfort! No, I probably won't be going on any long car trips right now, or eating any burritos! Yes, perhaps I should just bring a bucket with me at all times. Ha ha, I'll be sure to look into that tip about the adult diapers! Hey funny guy: time. place. not. NOW.

5.) The Motherfucking Eternal Oblivious Optimist

Me: I have Crohn's.

Person: Well, at least you'll probably get really skinny now (actual comment said to me). I sure you will grow through this experience. I really feel like you'll come out more healthy on the other end! Aren't you happy to finally have a diagnosis?

Huzzah! I have Crohn's! Let's through a parade with CONFETTI! No, dumbshit, I am not happy to have received this diagnosis. After a decade or so, I had come to live with the IBS thing-at least it wasn't going to kill my ass. Now, if I do get really skinny, it will be because of my body's inability to digest food!  Or because I had some of my colon removed! Way to look on the bright side though-now go play in traffic. Thanks.

As you can see, my bitterness knows no bounds! You may be asking yourself, what could I possibly say to her that would NOT piss her off and cause her to hurl obscenities at me? Frankly, I'm not sure there is a neutral reply that would not make me angry, but you could try on this for size:

Me: I have Crohn's.

Person: I'm sorry, that sucks.

AND.....pause.

If I want to share more information, I will! If not, I will appreciate the fact that you didn't try to fill the awkward silence with inappropriate humor or stupid stories or useless information. I understand that these responses have more to do with people's discomfort with illness and genuine desire to empathize, but for fuck's sake: try to stem that verbal diarrhea before it makes the whole interaction that much more painful for both of us.

Post the first!

Le Colon: she is ANGRY

I have Crohn’s. I hate to say it out loud.  Today I was at lunch with a friend and a friend-of-a-friend (FOAF-sounds like a dog shampoo), who wasn’t satisfied with my usual “I have a weird stomach” excuse when I ordered a dry turkey sandwich instead of cheesy grits or a hamburger or poutine (actually on the menu! The first time I’ve ever seen it anywhere in the city).

When the waitress left, the FOAF, who is actually delightfully forward and opinionated, turned to face me and demanded, “So, am I supposed to be satisfied with that explanation?” In most cases, I would have told her to go fuck herself, but as I said I think she’s funny and having an angry colon is something I need to adjust to. I thought about telling her the whole sad history, about how I’ve always had a “sensitive” stomach and how I’m lactose intolerant, or how for the last ten years I’ve been living with the completely useless diagnosis of IBS, or how eating avocados makes my digestive system do circus flips. 

 “I have Crohn’s.” So simple and so desperately sad. “Oh, bless, I worked in a hospital where they had a whole ward for you people. The gastro floor.” She proceeded to tell me all about her various ailments (we are both without gallbladders!) and the incident passed.

 I find this often happens when I share this diagnosis: I engage in a medical version of the card game bullshit:

Me: I have Crohn’s (whacks the card onto the table) 

Other Person: Well, I have seasonal allergies (three cards go down)

Me: Yeah, well, I’m VITAMIN D DEFICIENT (two cards)

Other person: Well, I had a hysterectomy last year (four cards-ouch)

 

Me: Well, I have Crohn’s AND IBS (boo-yah)

Other person: Oh yeah? Well, I had breast cancer and a hip replacement and MY DOG IS ON LIFE SUPPORT (winner!)

 Hmm, maybe I need  to start hanging out with a younger crowd.

This is all so new and so strange and so scary. All of the other blogs I’ve found have been written by Crohn’s veterans, with surgeries and scary medicines and hospital stays under their belts. I’m a newbie, desperately holding on to the hope of normalcy, and I just can’t relate-so this is my blog.