Adventures in Crohn's Land: Part 924

Guess what I had yesterday......

A small sampling of exchanges from yesterday's colonoscopy, presented without comment:

Trying to explain the art of anesthetization: 

Anesthesiologist: It's like tequila. After a few shots, you're pretty comfortable and happy, but after 10 shots we could amputate a limb.
Me: That's kind of a grim example.
Anesthesiologist, looking shifty: That's how we used to do it in the old days. (he was maybe 5 years older than I am).

Two anesthesiology nurses were wheeling me to the procedure room-they went down the wrong hallway first, so I naturally did a pageant wave to the random people in the offices there. When they wheeled me into the right room I was facing the wrong way, and they had to spin me 90 degrees, which is difficult when the room is filled with large equipment and monitors and wires. Another nurse was helping them. 

Nurse #1: Wheee! It's like a ride at Disneyland!
Me: With better drugs!
Nurse #2, under his breath: Probably cheaper, too.

One of the anesthesiology nurses was wearing a pair of clear goggles pushed up her head. 

Me, noticing: Um, I can't help but notice you are prepared with goggles. WHAT DO YOU THINK IS GOING TO HAPPEN IN THERE??
Nurse: Oh! I always wear these! Nothing to worry about!
Me: Squinting, unconvinced.
Nurse: You're funny.

Consolation prizes

 

waterwaterwaterwarter every day I'm hydrating

 

I've had a pretty rough few weeks. More specifically, a spectacularly awful week followed by a few weeks with patchy awfulness. I'm not sure if my medication isn't working anymore, or what's going on-and the only way to find out is to strap on a miner's helmet and travel deep into the recesses of my angry, angry colon. I thought I could get through 2015 without a colonoscopy, but the JOKE'S ON ME.

 

At the end of the awful week, I had a doctor's appointment, and my doctor wasn't impressed when I mentioned that I had broken my non-colonoscopy prep record for number of bowel movements in a day. That was not a good day, although I think I managed to watch at least 1/2 a season of OITNB in between bathroom sprints. During the appointment, I was crying nonstop, not in an emotional way, more as a weird side effect of being dehydrated. I don't know if this is a thing in general, but when I'm really dehydrated, my eyes kind of leak (ironic, no?). It must look really weird, to not having a crying face, or a crying voice, but just randomly crying eyes-I think my doctor was kind of wigged out. We talked about different treatment options, and at the end, I informed him that he needed to hydrate me. I believe my exact words were, "either you do it or I will find someone who will," which was kind of an empty threat because there aren't really neighborhood hydration pushers, although if there were I would totally hit that.

 

Maybe it was the calm, creepy crying, or just my general air of resignation, but he agreed. I totally got pity hydrated, and I will take that all day every day. That is one of the things I like about my doctor-I think he genuinely feels badly when things aren't going well for me. I also think he wanted to give me something, or do something, to make me feel better. Which it did.

 

You know what's fun? Trying to stick really small veins when a person's dehydrated. The office wasn't really set up for IVs, and so there was some general scrambling for an IV pole and supplies. The nurse who came in seemed vaguely concerned about the whole thing, which is never a good sign. She talked incessantly about the process of inserting an IV, and poured over my arms and hands looking for a good candidate: "don't mind me, I'm just going shopping!" Here's another fun fact: though I am in fact built like a cart horse, my veins are Shetland pony small.

 

Now here's where I get a little judgmental: as she was running her hands across own, I noticed she had a small tremor. I'm hard to stick in the best of circumstances, but I was tired, dehydrated, and praying the immodium would hold, and all I could think was fuckmefuckmefuckme. I showed her my one reliable vein, turned my head, and braced for the worst. She narrated the whole process, and I mean the whole process: "Ok, a little poke. I think I'm in, hold on, let me feel.....so far so good.....let me just check.....I'm going to push it in a little farther....wait.....I think I went through....yeah I can't get it in...." and on and on and on. When it was obvious that one didn't take, she went through the whole process again, looking over my arms (front and back), hands, elbows.....and then she tried again.

 

This one hurt worse than that last one-I've never had someone really shove a needle into a vein that forcefully (excuse me while I pass out even writing this). She kept up the narration this time, push, talk, push harder, until I finally told her, it's ok if you don't tell me what's going on! Which she ignored, and finally she gave up on that vein as well.

 

At this point, I was debating how badly I wanted the hydration. Like a lot of choices involved with this disease, it was a case of, do I want to feel crappy now, or feel crappy with additional crap in hopes that I might feel better in the future? Thankfully, the awesome PA had been observing this whole procedure and finally stepped in to bring in the ringer. Every medical facility has one-the chosen one, the vein whisperer. This PA wears funky glasses and calls everyone honey and sweetheart and gets away with it. She expertly managed the situation, calling in the ringer and gracefully excusing the current nurse without ruffling any feathers. The nurse seemed relieved to be let off the hook, and praised me for being a really excellent patient (by passively laying back and not moving? gold star!).

 

The ringer stepped in, and I could tell from the moment she stepped into the exam room that she was a bad ass. She was from another department, but you could tell she was used to this situation, even relished it. She had spiky silver hair and ice blue eyes, and moved with quiet confidence and grace. I told her that she was welcome to try any vein she wanted, but I wanted some lidocaine first-and that's when she pulled out two tiny syringes full of that shizz, with a gleam in her eye. I almost proposed to her on the spot. She selected a vein, and when I told her the previous nurse dismissed it as a poor candidate, she looked me straight in the eye and said, "well, she's not me" in a gravelly voice.

 

I'm not really attracted to the lady folk, and this could have been the dehydration talking, but I kind of wanted to make out with her a little at that point. Now, do you think she got it in? She fucking got it in, of course she did. It did take quite a while, as she went at a glacial pace, and apparently got blood all over the floor and my arm. But she left with a big smile on her face and put a big one on mine. Rowr.

 

When I get rehydrated, there's a point where I can feel everything unclenching, relaxing. My headache disappears, I feel calmer. Sometimes a girl just needs a little pity hydration to perk her up.

 

I'll have the colonoscopy next month, and I hope Gatorade and good old H2O can control everything until then, but if not-I know just who to call.



Nothing to crow about

DRAMATIC DATELINE STYLE REENACTMENT

There's a big magnolia tree outside my window, with a robin's nest nestled in the crook of one of the larger branches. It was empty last year, but a few days ago I woke up to the whoosh whoosh whoosh of bird wings. A mama bird was flying around the yard collecting moss and hopping around the outside of the nest, plugging holes and freshening up the mud and twigs for the arrival of the next generation.

This pleased me, as I saw it as a generally hopeful sign of spring, a time of new beginnings and possibilities and other Hallmark whatnot.

This morning, I heard the mother robin going batshit insane, pacing along the gutters of the roof opposite her nest, screaming towards it. Putting on my glasses, I saw a fat black crow hovered over the nest, shards of baby blue egg and yolk stuck to its gaping maw of a beak. He (not sure why I thought of it as an asshole male bird) looked, if you'll excuse my anthorpomorphization (I know that's not spelled right, DEAL WITH IT) of the animal, pleased with himself, his large glossy body looking especially menacing in comparison to the small nest he was pillaging. To add insult to injury, he took his time with his breakfast, lingering long after the last egg was consumed, the mama bird increasingly, and impotently, furious.

It was a dispiriting way to start the day (more so for the mother robin, I imagine). The mother bird hasn't returned, and the once tidy nest is in disarray, as though tossed in a burglary. I keep the blinds closed so I don't have to look at it.

I'm not going to try to draw some deep and meaningful connection between this little vignette and the current state of my health, both because that is some serious Freshman Lit 101 shit and also because I'm too tired to attempt that manner of pop-psychology gymnastics. But things are not good right now, and it's hard to remain even-keeled and dry-eyed about the whole thing.

Today was one of those days where I wish I had a giant dog bed I could park between the toilet and the tub, so that I could curl up and doze between bouts of angry colonic activity. It was one of those days when I had to practice, in my head, the polite excuses I could use if the furnace repairman tried to ask me a question or hand me a bill when I was about to run to the bathroom.

"If you'll just hold on a minute, I have to run upstairs."
"I have the stomach flu, so if you could just leave the bill on the table that would be great."
"I left my checkbook upstairs, hold on while I grab it!" (10 minute interval and several toilet flushes follow. smooth!)
"Hold on, I'm expecting an important phone call from my doctor's office, I'll be right with you!"

And on and on and on. Luckily he kept himself occupied during the most active part of the morning, far away from the bathrooms.

I am so tired. I'm tired of having to think of excuses for my AAC, of canceling plans, or of actually forcing myself to follow through with plans and meet ups and feeling sick the whole time, or worried about getting stuck in traffic with what my foreign neighbor would call "a dodgy tummy."

I'm tired of waking up with what I call the goat sweats, wherein I'm pulled from sound slumber by a general feeling of dampness and then get a whiff of myself smelling, you guessed it, like a goat who's just gone to Zumba class.

I'm tired of forcing fluids when the last thing I want to do is drink anything because I'm so nauseous, when even the weight of water in my stomach feels like too much.

I'm tired of eating foods that are white, whitish, beige, brown, or taupe. Noodles, toast, plain applesauce, rice. I'm tired of simple foods like hummus tasting like a vacation for my tongue, when there is a great wide world of delicious food that I could be eating.

I'm tired of being tired, to an extent where putting together sentences and remembering specific words feels like work.

I'm so tired, in fact, that I actually called my doctor's office and requested steroids, which I hate, because I want to feel better.

I picked them up today. I'll start them tomorrow. I'm too tired to think about the side effects, or getting work done, or putting away my laundry, or doing anything beyond travelling between my bed and the kitchen and the bathroom and couch.

Tomorrow, I'll take the pills with a swig of Gatorade, hoping for an energy assist from the quick jolt of glucose to my system. I'll eat my toast and hope for better things, Hallmark sentiments and all.


It's all I can do.

Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



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 #117: I could medal in this kind of running (or at least place)

Different kind of running.....
Confidential to the lady in the grey spandex-you might want to invest in some different pants because I CAN SEE YOUR REPRODUCTIVE ORGANS geeze. 

Hello again blog! Welcome to 2014! Happy New Year to everyone who reads this blog and their colons/various digestive apparatuses. 

I could go in a lot of different directions in this post; how it's my two year diagnosis anniversary; how it's been a full year on my scary injectible medicine; how various colon attacks ruined both Thanksgiving AND my birthday dinner. 

However, this is a blog post about how people don't know shit about Crohn's (see what I did there? eh? eh?). 

This week I volunteered to help cook a meal for an area non-profit, and I ran into a family friend who I hadn't seen in a decade or so. She and her family were a definite fixture of my childhood; her daughter and I got into all kinds of mischief at various holiday dinners, and amused each other while the adults were being boring by sneaking away to the basement and pretending we knew how to play pool (I still don't). 

I was more than happy to see her, and we shared cell phone pics of our family members while dressed in ugly borrowed aprons, surrounded by huge vats of boiling water. Then came the inevitable question: what have you been up to? 

I kind of came to the decision that I would not lie about my current situation with people close to me, and since this woman had known me since birth I didn't feel the need to rattle off the jobs/hobbies/volunteer work I was into two years ago, pre-Crohn's. I told her I had been diagnosed with Crohn's and I wasn't working that much. 

Family friend (FF): Crohn's? What's that? 
Me: Oh, it's a disease of the digestive system. (blank stare) An inflammatory bowel disease? 
FF: Oooooooh ok. So, you get the runs a lot? 

Let's pause. 

OH HOW I HATE THAT PHRASE. Having "the runs" sounds kind of comical; I picture a comedian with their knees fixed together, kind of crab walking heroically toward the bathroom. Subtext: they probably won't make it, and that's funny! It's funny to lose control of your bodily functions in public! There is a cinematic tradition of using poop as a comedy prop, whether someone gets turned upside down in a port-o-potty (see: Jackass, the movie), clogs the toilet of a potential date (see: Along Came Polly, a thousand others), or just completely loses control of their bowels all together (see: Bridesmaids). In the last two examples, the characters have "the runs" due to food poisoning. They're sick, but it's still funny when they humiliate themselves. I guess I never appreciated that distinction before I got to deal with an AAC on a full time basis; I certainly laughed along with everyone else in the movie theater, but now it seems like kind of a cheap laugh, and one that hits a littttttle to close to home. 

Beyond any comedic connotations, "the runs" is just a coarse phrase. It's one of those cases where the word that describes the act is equally as disgusting or off-putting. Maybe it's because I use the word so much (to my friends, family, physicians, mailman....) but the word diarrhea doesn't gross me out the way "the runs" or (even worse!) "the squirts" do. At least "diarrhea" is somewhat respectable, and compared to the other terms, it's downright dignified. And when it comes down to it, I think that's what pisses me off the most: giving what to me (and a lot of other people) is a painful, unpleasant, occasionally debilitating condition a nickname is not respectful. It makes light of a situation that may be funny in the movies, but isn't funny in my real life. 

Back to the conversation: 

Me: Yeah sometimes. That's a part of it. 
FF: Well, that's too bad. 
Me (not really wanting to continue the conversation): Yup. 

Argh. Part of me wanted to justify just how much more Crohn's is than just a bout of diarrhea now and then: but wait! Don't you want to hear about the daytime pain? The night time pain? The endless doctor's appointments? The invasive tests? The dehydration? The malnutrition? The side effects from the meds? The sore joints? The night sweats? The hair loss!? I CAN TELL YOU ALL THE WAYS THIS DISEASE SUCKS!

But it wasn't the time or place, and I'm not the official ambassador for IBD. It's just frustrating to have someone reduce your experience to a piece of slang that doesn't begin to encompass the day to day struggles of Crohn's. Today, for instance, I ate peas for the first time in like 6 months and worried about that and had a lot of bowel movements and now I have a pain in my right side and I'm tired. And this was a good day! I ate out at a restaurant and ran errands and went shopping, all while keeping in mind where the nearest bathroom might be located. 

The last time I ate out and went shopping, a week ago, I was in the middle of Crate and Barrel when I felt that special feeling (cold sweat, cramps, pain) and knew I had about 2.5 minutes to make it to a bathroom or poop on the showroom floor. I did indeed have "the runs" and I did have to actually run to a bathroom and no, it wasn't funny, even a little bit. 

I know there is no succinct way to express this reality to people. I get it. 

If nothing else, what I take from this conversation is the desire to be more open and receptive when other people try to tell me things about their lives. To not assume I know all the answers, and to try not to belittle or reduce their experiences in any way. I'll try not to be as ass about whatever they disclose, and I'll let them tell me what it's like. 

Which I would have done with this family friend, if I thought she really wanted to know. 

Post #116: My holly jolly colon

Get in my face, you delicious little sugar grenades. 

Late night, 3 a.m. Awake and in pain. Sound familiar? This, my friends, is the worst kind of SSDD. 

I drenched the sheets with sweat. I remember, when I was trying to lay perfectly still so that I wouldn't move and make the pain WORSE, that I seemed to be sweating between my toes. Pain twisting my insides, shaking, forcing myself to take slow, measured breaths, failing and hyperventilating a little, and this is what pops into my head!?

Toe sweat: is that a thing? Do you sweat between each toe? Are there sweat glands down there? Is it weird to have sweaty toes? I mean, I always think of feet being sweaty, but not the toes, really. Is each little space between them like an individual armpit? Hmm. 

All weekend I baked (6 different kinds of cookies, in your face MARTHA), and then ate cookies and made myself sick. After a particularly sugar filled binge yesterday morning, I ate a veggie filled lunch to compensate. So, sugar or carrots? Cookies or zucchini? Peanut brittle or celery? What exactly set off my AAC? Hard to say. 

Not that it matters, whether it was the cookies or produce, when you're in bed at 3 a.m. sweating between your toes. 

But oh, that familiar holiday food paradox. I'm talking about the way the holidays (I'm looking at you Thanksgiving and the entire month of December) trick you into thinking that for some reason you DESERVE to eat real food during this specific time period, as if the unwritten (and unknown) laws of your tricky colon suddenly don't apply when the world is decked out in pine boughs and velvet red ribbon and holiday fucking cheer. 

It doesn't matter what your colon did yesterday, or the week before, because all of a sudden it's THE HOLIDAYS and you should let yourself enjoy that cookie, that candy, that giant roasted turkey leg (or whatever). Come on! You're around people who can eat whatever they want, and you soooooooooo want to be like them. The urge to "pass" as a normal eater is never so strong as during this particular season, so you let down your guard a little, relax your strict food rules, and indulge, as though hypnotized by listening to "White Christmas" one too many times. 

You swap Christmas cookies, and go to festive holiday lunches, and sample a few too many of the treats that you bake for other people. And then at 3 a.m., the pain comes, and the natural conclusion is that you DID THIS TO YOURSELF. This notion is further reinforced by the first thing people say when you tell them about your latest setback: "Well, was it something you ate?"

Nothing like a little internal (and external) food shaming to keep your sore colon company!

Here is what I know: my colon does this sometimes, and it doesn't matter what I eat. But it's hard not to draw the reasonable conclusion, especially during this season of unrestricted, mindless eating. I'm not immune to the lure of sprinkles, and I'm a sucker for stuffing. Guilty as charged! But this was not my fault. Fistfuls of Christmas cookies didn't help the situation, I'm sure, but the colon has a logic all its own. 

So now I'm sitting here typing and sipping my meals through a straw. I did have a pretty good run: I managed to swing Thanksgiving, and some of December, before my body got up and slapped me, reminding me that ultimately this is my reality, this 3 a.m. pain, not those few days of gleefully pretending my colon was the same as the other girl's. 

I can (and will!) enjoy the rest of the season, the first snowfall and the exchanging of presents and the visits from family. But now, as pain throbs in my side, I will do so with my mouth closed and my guard up. Depending one when the pain lessens, I might be eating soft foods till New Year's. Like it or not, that's just the reality of the situation, my situation, the one that involves an angry and unpredictable colon. I didn't ask for or cause this (repeat to myself a thousand times), and nothing takes the shine off holiday festivities like a bucketful of Prednisone, so I'll be taking it easy. 

And while I'm being kind to my body, I'll try to remember to be a little kinder to myself, and remember that this season can still be celebrated in a way that doesn't involve the massive consumption of butter, sugar, and eggs. There is, hopefully, seasonal happiness beyond the cookie jar.