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.



Post #109: Welcome Home!

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

Thankfully, my colon was pretty chill on vacation. 

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

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

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

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

I am so, so tired of all of this. 

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

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

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

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

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

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

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

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

Post #108: The Spinach Sprint

Lettuce: nature's leafy green ex lax. 

Hello neglected blog! I have been on vacation-relaxing, reading trashy novels, eating PRODUCE. 

WHAT!? I know.

Ever since I have started this new diet, I can now digest "skins" and seeds and a small amount of roughage. Green beans and tomatoes and unpeeled cucumbers, oh my! Still working on nuts, but PROGRESS!

One of the things I used to enjoy most about vacation was the unfettered access to delicious, fattening foods. Vacation was a time to eat out all the time, and if you did go grocery shopping, to buy sugary cereal. This was a huge thing in my household, which was firmly entrenched in the Grape nuts-Cheerios-sticks and twigs camp of high fiber cereals. But once a year-during vacation-my sibling and I were allowed to each pick out one box of nutritionally worthless, chemically altered, neon-colored, sugar saturated goodness. Cereals that had CHARACTERS (I salute you Cap'n!) and that were advertised on TV. Cereals that were so wrong, they were so right. 

I remember one year buying a box of cereal that was made up of tiny chocolate chip cookies. Cookie cereal! Mind. Blown. 

Vacation was different this year, and frankly eating out hasn't been the same since my colon became committedly angry. Knowing that I would have limited control over food options-at least for the first part of the trip-added a layer of anxiety to what should have been a relaxing time. 

At first, everything went swimmingly. Servers were accommodating about my weird menu requests and substitutions; basically, any restaurant anywhere will serve you grilled chicken breasts and sliced tomatoes. I was doing the tourist thing, I was eating out for three meals a day, and I felt OK. So I got a little cocky. Can you see where this is going? Let me take you there!

After a few days of being exceedingly careful and cautious, I was feeling a little more mellow about the eating out thing. That night the server placed my customary chicken on a nice bed of mixed greens. I felt empowered. Puny lettuce leaves!? You are no match for my relatively less angry colon! I miss salad-I love salad! I had three bites of salad and felt fine. A little smug, even. 

The next morning, I was calmly eating eggs and toast when my colon howled in protest. Without a word to my dining companion, I quick marched to the bathroom and bolted the door closed. The bathroom was between the kitchen and dining room, and there were people constantly walking past the door. 

** Warning! Here's where a little TMI happens. And then will probably happen some more. **

There is a special kind of desperation that comes with having violent bowel movements in a public place. Thankfully, this was a one room bathroom-no stalls-but people were constantly outside the door. I couldn't tell if they were waiting or going back and forth to the dining room, but it felt public, and I felt rushed and embarrassed and sick. Three times I thought I was done, had washed up and had a hand on the door knob-when I had to start the process all over again. It was incredibly frustrating.  For those of you with Crohn's, or angry colons of any variety, you know these things sometimes come in waves. 

A while later, I walked out and felt my cheeks burn as I took my seat, wondering if anyone else in the cafe had been waiting to use the bathroom, or had noticed I had been gone from the table for the past 10 minutes. Mentally shaking myself off, I prepared to continue my day. We headed off to the local giant bookstore, which is really like a literary mini-mall. I could spend hours there, lost in the stacks, inhaling the mingled odors of books old and new. I had just started browsing-I was in the C's-when I started to sweat. 

I ignored it-surely I had take care of all this at the restaurant? When I felt the alarms go off down under. Apologizing profusely, I broke up a conversation a clerk was having with another customer and asked for directions to the bathroom: down the hall, up two flights of stairs, and then down another hall. 

PANIC. 

As I raced up the stairs, I thought I might lose control before I hit the stall. When things are THAT URGENT, the last thing you want to do is JOSTLE THE SITUATION, or hike up a few stairways, flinging aside small children and loitering tourists. I was also carrying a stack of books, which I temporarily shelved on a cart, and made it just in time. To a crowded public restroom full of mothers and children. 

Sigh. 

At that point, I was just happy not to be pooping behind a bookshelf. I was feeling a little sorry for myself, thinking about the what ifs-what if there was a line for the bathroom? What if I didn't make it in time?

But I did make it in time-two more times to that particular bathroom alone. 

Feeling depleted and exhausted, I still managed to find a few books, and then downed some Imodium to prepare myself for the THREE HOUR DRIVE to our next destination. 

I'm not sure what I'm writing about all of this here-it certainly wasn't my finest hour, or my new diet's, or even my colon's. But sometimes, this is what it's like. Sometimes you get lucky and don't embarrass yourself (too much) in public. 

For me, this is just an example of how things can go from good to bad in an hour, or a day. How no amount of preceding health can negate the possibility of sudden sickness. I gambled with the three bites of salad (and I'm not exaggerating-literally, three bites) and I paid the price, but sometimes the reasons for the colonic onslaught (ha, that sounds like a metal band) are not so clear. 

You can do everything "right" and still find yourself in a desperate race for the toilet. 

All in all, I had two bad days on vacation. I brought my injectible medication and stashed it in a  hotel minibar. I made it through. It's easy to forget that when you focus on the desperate moments, when you're whimpering in a deli bathroom and willing your body to just let you be normal for a while.

I made it through, and I had a good vacation. And I can go back to that bookstore next year with my head held high, knowing I didn't leave a little present behind the stacks. 

Post #97: I'll be the girl in the tube

Said no nurse to me, ever. 

Haha, nurse wood. 

So: mission MRE, completed. The hospital where I had the procedure just completed a fancy schmancy upgrade of their Radiology unit, which means the MRI suite was pretty posh. Soothing, back-lit pictures of verdant fields on the ceiling. Shiny new MRI machine. Slick wood floors, un-scuffed walls, that new car smell (well not really, but no antiseptic hospital smell either). Not that it mattered, really, as I was inside a loud whirring tube for the better part of an hour, but the upgrade increased the hospital's capacity by a lot (more machines! whooooo) so there was less waiting around after I finished my barium juice. 

Getting an MRI and a CT scan are two very different animals (I had a lot of time to think in the tube). When I get a CT, I feel like the blood in my body swirls and sweeps and rushes up and down in a current, like a half empty bottle of soda that has been forgotten under the driver's seat and rolls back and forth while you drive (just me?). An MRI feels like the cells in your body are being excited, like pasta just as the water starts to boil. For whatever reason, it feels a little like being simmered. You can feel your body heating up. 

It's not painful, or even unpleasant, but like so many medical procedures it can just be followed under WEIRD. It's a weird and unnatural feeling. When they inject the contrast, and your mouth fills with the taste of what the nurse has accurately described as a combination of paint thinner/nail polish? WEIRD. The fact that they have to strap what looks like a teenage mutant ninja turtle shell onto your stomach to get a better picture of your intestines? WEIRD. The fact that you are being shuttled in and out of a giant magnetic machine, easy listening being piped into your headphones, while a nurse gives you breathing instructions (STOP BREATHING NOW)? WEIRD. The whole thing is just weird. Amazing, and weird. 

As I was being slid into the tube, I had a momentary freak out, which I think is natural when they strap down your arms, cover you with a weird turtle shell thing, tell you not to move, and shoe-horn you into a loud, enclosed plastic cylinder. The give you a panic button (which the nurse let me squeeze-it sounded like an old-timey car horn, like on Chitty Chitty Bang Bang), but after a few seconds I realized that for the next 45 minutes or so, someone else was taking over my Crohn's. All I had to do was lay there and breathe. My bowels were coated; they injected something to slow them down; my IV was in (good job veiny!); I didn't have to worry or wait or think about it in any way. So I took the break, and it was nice. 

Then I came home, the bowel-slowing-down drug wore off, and I had explosive diarrhea all afternoon. But it was nice while it lasted. 

I meet with my doctor next week to discuss next steps. I am full of drugs (so many drugs!) and side effects and anxiety, but mainly I just want a plan. As I said before, I am worn down with waiting. It's not even a questions of losing patience; that isn't a concept that really applies here. I am worn down to the point where I  am afraid to have expectations. 

Whatever happens next week, I hope that I at least find some momentum. And, you know, a better solution for this whole Crohn's problem. And maybe a puppy. FYI: I would totally settle for the first two. 

Post #86: A day in the life (of an AAC)

After an exhaustive search, it was determined that I have no candy up my butt.

Oh, colonoscopies. First thing's first-everything is pretty much the same, which is still not normal, but (pending the biopsy results) also not worse. Hooray!? Now, let's make a pro/con list of this most recent procedure:

Pro: The morning of, a friend sent me the following encouragement:

"For tomorrow, because I have no idea what to say before someone goes in for a roto-rooting: [pounds fist against chest then raises it in salute]."

AWESOME.

Con: Prep. Even though the pill prep was less vomit inducing than drinking the "jug of fun" (as a pharmacist called it the other day), it still required swallowing 32 giant salty horse pills and then, you know, cleaning house. And by house I mean colon. And by cleaning....well, you get the picture.  

Pro: It's over!

Con: For whatever reason, they wheeled me into the treatment room 45 minutes early and left me there, giving me ample time to stare at the apparatus that would soon be introduced to my AAC. It is really, really long, and the controls look like a video game joystick. Also, I couldn't really explore the room (extra blankets and emesis basins and extra lube, oh my!) because my "tether" (whatever you call the tube connecting me to the IV) was too short. Not that I tried....

Pro: The nurses there are SO FREAKING NICE. The nurse in the procedure room was joking that I had really come in for a day at the spa, and when I left I would have a spray tan. My doctor joined in: "let me go get the cucumber slices!" I'm not sure what prompted this, or why everyone thought it was funny at the time, but I appreciated the attempt to bust out a little humor pre-butt scope.

AMPs for the win!

Con: This is kind of a big one. For a number of reasons, I wasn't able to be fully sedated for the procedure. I was high, sure, but also aware that there was a pokey foreign object in my colon. I kind of floated in and out, but I remember being uncomfortable and kind of panicked about being awake, but also too drugged to really panic, if that makes sense.
In a last ditch effort, they gave me some benadryl, but the problem wasn't a mosquito bite, but more a giant flexible hose in my AAC. At one point, I must have closed my eyes, and I heard my doctor say, "Oh good, she's finally asleep" to which I replied, "NO ACTUALLY I'M STILL HERE."

Good times!

Pro: Even with the SURPRISE! discussed above, I am still not scared of having a colonoscopy. Nothing truly terrible happened, and I won't be developing a complex over this. The benefits far outweigh the downsides, and awake or not, I'll still have another when I need one.

So-colonoscopy? Check. Follow up appointment scheduled? Check. Back to eating delicious solid foods? Checkcheckcheck. Decision on whether to start the new scary medication? TBD.  

I feel like this was a hurdle (a hurdle I asked for, to be fair) that I had to clear to start off 2013. One way or another, that happened, so now it's on to the next.

Post #85: Extreme sexiness ahead

Hahaha, this made me  laugh. And I haven't really been laughing today.

So. I am a year older. It's now been exactly a year since my diagnosis, and to celebrate, I am going to have my innards roto-rooted on Friday. I don't want to write some depressing, introspective review of the last year, because I have been composing that particular essay in my head for the last two weeks. For the most part, the things that stayed the same have been frustrating, the things that have changed have been scary, and a healthy dose of uncertainty has added fun to the mix. Now you're all caught up.

A very funny, wise friend from college wrote on my FB wall "Congratulations on another turn around the sun!" and for some reason, that seems like the perfect attitude to adopt at this time in my life. I usually have some angst around my birthday, as I mentally tabulate all of my successes/failures to date, but this year I wanted to skip the angst and take a nap. Something about having a birthday so close to New Year's creates a  double whammy of existential pondering, but again, I only have so much energy for that kind of mental flogging.

I've postponed having a birthday party, again-when you have an AAC, why bother planning a celebration with food you can't eat, drinks you can't drink, and activities you don't have the energy for? It seems like adding insult to injury. I keep promising myself that when I feel better, I am going to celebrate the hell out of these two birthdays, but I would settle for a smaller affair where I just didn't feel like crap.

Speaking of feeling like crap, I am gearing myself up for the super fun time that is colonoscopy prep (I told you there was extreme sexiness ahead!). This is not my first rodeo, so to speak, but it is my first time using the pill prep (32 pills! yikes). While I'm SO FREAKING GLAD that I don't have to drink a gallon or two of hurl inducing salty lemon lime colon explosion juice, I am always wary of trying something new. My doctor will also be meeting my colon in person for the first time, and I have to say I'm feeling a little awkward about the whole thing. In the past, my colonoscopies were performed by a specialist I didn't really see clinically; I feel like I spend a lot of time with this current doctor, and now all mystery will be removed from our relationship. I know this is a stupid thing to worry about, but when you're constantly sobbing in front of your doctor and discussing sexy topics like malabsorbtion, painful gas, and the quality/quantity of your bowel movements, it's nice to think you have a little dignity left. Then again, if you spend the 18 hours before the procedure having explosive diarrhea like I did last year, you would pretty much let the mailman preform the exam if it meant getting hooked up to some fluids and getting a little sedation. So there's that.

After this procedure, I will have to make some treatment decisions, something I've alluded to in previous posts. I've been delaying it, and delaying it, and it's finally time to nut up (such a gross expression, but it makes me laugh every time) and take a long, hard look at my life and decide if I can tolerate how things are or if I am willing to add more medications to the pile for a shot at better quality of life.

I talked about finding a motto for 2013, and while I didn't settle on one, I've been thinking a lot about something my yoga teacher said a few classes ago. My leg was splayed to the side in some sort of super sexy deep groin stretch. Everyone else in class was groaning, and I felt like I could release my leg all the way to the floor, but I didn't because I was worried that it might hurt and no one else was doing it. My teacher walked over, grabbed my heel and repositioned my leg, stretching me farther than I thought I could go. "How does that feel? Is it ok?" I thought about it, and there was no pain, no stress. "Yeah, actually." As she moved to the next student, she replied, "Good. Never settle for less when you can do more."

That stuck in my mind. When it comes to my Crohn's, am I setting for less, or just settling in general (that last sentence felt very Carrie Bradshaw-esque. Like if she were writing about Crohn's, she would say that, and then go cheat on/with Mr. Big and cry about it over appletinis in between bathroom trips)? I've felt like crap for the last few days-a combination of eating like crap (it was Christmas! and then my birthday! and there were treats EVERYWHERE), sleeping too much, and going off my exercise schedule. My stomach is hard and bloated. I'm in pain, and my AAC is not pleased. I haven't really left the house in two days. Is that what I want the next week, the next month, or the next year to look like?  

I don't have answers to all my questions, and I find myself, yet again, waiting and dwelling in uncertainty. All that aside, I made it through a year with Crohn's. I should focus on that. I made a full lap around the sun, and I have some momentum as I start my next turn.

Post #84: Brought to you by the letter B

Most. Depressing. Advertisement. Ever.

Can you imagine if Santa really did have Crohn's? He'd have to tow a port a potty behind the sleigh....although technically he would have access to all the bathrooms in the world. It seems especially cruel to leave milk and cookies for IBD Santa, when what he would really want is candy coated Imodium. If you're on the naughty list, maybe IBD Santa clogs your toilet! Or poops in your stocking! Ewww. Annnnnd, we're done.

Why is this post brought to you by the letter B, you ask? B stands for bloated, balding (one baldish spot up front, now covered by bangs but still freaking me out), bitterness, bitchiness, BIRTHDAYS, and bananas (bananas are easy on your stomach, FYI).

As you may have guessed, I'm steroid free, and my AAC is not loving it. Add to the mix a cold I picked up from some random lady who was hacking next to me during class at the gym, and a time of year that usually makes me introspective and moody, and whee! Welcome to the party.

It's pretty much my one year Crohn's anniversary (yeah! said no one). I'll have a colonoscopy early next month to see where things stand, but I pretty much know what my next step is going to be.

hahahahaha so true.

This year the prospect of planning a "fun" birthday is especially depressing. Last year, for my big milestone birthday, I was feeling like crap, and promised myself I'd plan mini-celebrations throughout the year to make up for the fact that I could barely drag myself out to lunch on the actual day. I thought I would be feeling better, and I looked forward to "getting back to normal." It's been a year now, and I still feel like crap (my stomach is very loudly agreeing with that last statement).

With the exception of a few good stretches brought about by my favorite little pink pills, I'm pretty much where I started. I've had more tests, I have more experience, but I don't have anything approaching a workable solution for the problem. This past year has been full of pain, frustration, fear, and uncertainty. It has also been filled with small wins, and some bigger ones, including the fact that I'm still standing despite all the shit that's been thrown my way in the past 12 months (I mean that metaphorically, there wasn't a roving band of monkeys throwing feces at me. Just to clarify). I'm here and I'm still hopeful. That in and of itself is something to celebrate with (dairy free, low fat) cake.

So I have a birthday coming up, and a colonoscopy, and the fresh slate of a new year (I wish it could be that easy-Crohn's was soooo 2012. Peace out IBD in 2013!). I don't know what's in store for tomorrow, let alone the next year, but I still find myself making plans, listing things I want to accomplish. I hope I will be able to cross some things off that list. I hope I will be able to have twice as many mini parties to make up for the past two years of shitty birthdays. I hope I will spend less time on the couch, bed, and toilet and more time out in the world. I hope-I guess that's the main thing. I still hope.

Post #81: The cookie conundrum

But also Crohn's, Cramps, and Constipation!

 

Yeah, no more enforced blogging! I have to say, that really sucked the fun right out of writing a Crohn's blog, ha.
 
Before I forget, it was great to see too IBD related articles on one of my favorite websites: read them here and here.
 
I'm watching Sandra Lee's Taverns, Lounges, and Clubs (TLC-get it?! get it??), otherwise known as the Sandra Lee alcohol appreciation hour. This chick loves her booze. You have to appreciate someone who managed to make drinking her JOB.
 
Back in AAC land, the tapering off steroids continues, as does the increase in symptoms. Shocking, I know, but I keep putting all of my hope in being able to maintain steroid-free remission without having to take new and scarier drugs. It's like watching the same movie over and over again and hoping for a different ending. Complicating the issue is the fact that I continue to eat as though I'm on a full dose of steroids. Smart! As I approach my one year diagnosis anniversary (for my one year anniversary, I'll be registered with Charmin-just kidding, I still HATE THOSE ADS), you'd think that some of the lessons learned in the preceding months would stick: fatigue is unpredictable. Decrease in steroids=increase in colon explosions. DAIRY IS NOT YOUR FRIEND.
 
I guess I'm a bad Crohn's student, because I keep having to take, and fail, these tests again and again. The desire for normalcy, represented nowhere more powerfully than on the plate, is constantly testing my resolve. For every time I avoid plunging my face into red velvet cake (yesterday afternoon) I go out and think that suddenly I can magically eat lettuce (yesterday night). I forget about all of the cramps and bloating (this morning) and really want a cookie (right now). It's a continual cycle of frustration and remorse.
 
Welcome to the cookie conundrum: the reason that eating is so fraught with fear and suspicion. If I do eat the cookie now, I will probably be sick tomorrow morning, thus interfering with Yoga, which is my favorite fitness center class of them all. If I'm extra sick in the morning, and still do yoga, I will have even less energy tomorrow afternoon, which means a longer nap and a disrupted sleep schedule. Riddle me this: how can you possibly plan two moves ahead when your colon could decide at any moment to throw a wrench in your plans? You can't.

You can't control variables like fatigue, and even if you only eat "safe" foods you still might end up feeling sick. One of the many annoying truths about Crohn's: a cookie is never just a cookie-but sometimes it is. I can plan five steps out to accommodate eating one of my favorite "normal" foods when I'm out with friends, and still wind up spending my morning in the bathroom. Conversely, I can think, screw it, eat two cupcakes, and lift weights with the ladies at 9am. You never know.
 
Basically, even if you make (smarter) choices that lesson the likelihood of symptoms, there is no fail safe diet, or ritual, or exercise or pill, that will prevent them all together (or at least, any that I have found). I'm still trying to wrap my head around that reality. I'm used to having a more logical relationship with food: eat well, feel well. Eat fried chicken, feel like crap. Eat chocolate, may as well have taken a laxative. A year into this Crohn's business and it's still hard to accept that these rules don't necessarily apply anymore. Sure, the fried chicken thing is still true, but a cookie didn't use to have the power to make/break my daily plans.

Maybe that should be a motto contender for this year:

It all starts with one cookie.
 
or:
 
C is for cookies, BUT COOKIES AREN'T FOR ME.
 
or:
 
JUST EAT THE DAMN COOKIE-you'll probably have diarrhea anyway.

or:

Take a bite of that cookie-do you feel lucky? WELL DO YOU?

 
I'll have to tinker with those.

Post #72: When colons stop being polite.....and start getting real

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

HAHA awwww......

 

Prompt: "My life as a reality show." Write characters, plots, the set, and why people should watch

 

Is that cat picture not the most appropriate representation of some of the uniquely invasive tests we (Crohn's patients, and I guess other super lucky patients as well) get to undergo? My favorite part is that the cat looks like a Muppet head, ha.

 

I have a colonoscopy coming up in a bit, so it's on my mind. Also, I know two people who are getting colonoscopies this week. SUPER FUN TIMES FOR ALL. I'm going to try the pill prep this time (as opposed to the "drink 9 gallons of this salty expired store brand sprite tasting" stuff)-we'll see if it's an improvement, although really, the process is not meant to feel like an internal shiatsu massage. Anyhoo.

 

I dislike the prompt for today: there are no child beauty pageant contestants or Amish teens hiding in my closet; I don't race around the world for money, and if it involves math I'm definitely not smarter than a 5th grader. Most "reality" TV is exploitative and staged; some of it is painful to watch.

 

My life is not a reality show: it's just reality. No one would be interested in my exploits, and I have no interest in sharing them. I am going to share a little anecdote that illustrates exactly why my life would make a craptastic reality show.

 

Today, the plumber came over to install a new toilet. Here's the timeline of events:

• 10:00: plumber calls to say he'll be over in 30 minutes.
• 10:01: have a last BM in old toilet. Thanks for your years of trusty service!
• 10:03: Obsess about previous action. Decide I probably should have used another toilet.
• 10:04: Flush repeatedly; no detectable odor
• 10:05: Ignore stomach rumbling, hop in shower, get dressed, don yoga pants (of course)
• 10:20: plumber arrives early. Is talkative. Consider other toilet options.
• 10:30: plumber wants to talk about politics and what "my generation" thinks about the election. Are we hopeful about the future? Which party do we think best reflects our concerns?
• 10:40: plumber brings up wet vac to vacuum up toilet water. Excuse myself. Pray for thorough flushing.
• 10: 45: old toilet is carried down the stairs. Obsess about potential toilet germs leaking onto the carpet. When I confess this to the plumber, he says, "Most toilets aren't as germy as we think they are!" I think, IF ONLY YOU KNEW, cheerful plumber. If only you knew what goes down in there.
• 11:15: new toilet installed! Is shiny and new and clean. Plumber wants to do a toilet paper test to gauge flush strength. Puts in a measly three squares of toilet paper. I innocently suggest a move robust test. He puts in three more. I raise an eyebrow. Three more. Eyebrow. Three more. Eventually the bowl is filled with toilet paper. It flushes. I breath an internal sigh of relief.

 

Now, this was about an hour in my morning. Was it interesting to you? Because it wasn't that interesting to me. Besides having a super nice (and inquisitive!) plumber, most of the action occurred in my head. This does not translate into ratings.

 

So, since my reality show is a no-go, allow me to share this bit of wisdom from the plumber. As he was conducting the flush test, he asked, do you have a small glass jar? Naturally, my mind went immediately to the bad place, and I thought, dude, if you need to pee we have OTHER OPTIONS. Seeing my side eye, he told me about the toilet paper test. First, you need a jam jar or other similarly sized, sealable container. Fill it with water. Then take three sheets (squares?) of your toilet paper,  place them into the jar, and shake vigorously. If the toilet paper dissolves instantly, it is septic safe and probably not going to cause any blockages. If it doesn't, your ass needs to get some new TP.

 

The more you know (shooting star......). I'm pretty sure my one ply, recycled, non-bleached toilet paper would ace that shit, but I'm not so sure about my beloved moist wipes. We will have to see how both fare in the new, low-flow (shudder!) toilet.

 

Tune in tomorrow for another exciting (sarcasm!) installment of "Real World: Digestive Tract."

Post #71: Honesty is the (potentially grossest) policy

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM


Jazz hands!!

Prompt: Write about something taboo

 

Hey prompt: news flash! Pretty much everything I write about on this site, especially the bodily fluids portion of the Crohn's talk, could be considered taboo. Gas, diarrhea, colon explosions, and flatulence are not exactly cocktail party friendly topics of conversation.

 

I think the term "taboo" can be conflated with a number of other descriptors: uncomfortable, difficult, controversial, overly emotional, forbidden, disgusting. I think it's the first synonym-uncomfortable-that best describes the "taboo" nature of all of my Crohn's talk. What's been interesting for me, as I'm pretty open about describing my symptoms with their actual medical designations (i.e. saying diarrhea instead of "tummy troubles" ugh), is that people tend to respond in kind. They'll bring up their hysterectomies. They'll talk to me about their hemorrhoids, and bemoan the fact that the generic store brand of Preparation-H just ISN'T THE SAME.

 

At first, I was more circumspect, not wanting to cause anyone to be uncomfortable with discussions of my bowel habits, but to my surprise I was underestimating the over sharing threshold of my friends and family members. Granted, I'm not telling the barista at Starbucks about my morning cramps, but I also try not to shy away from being honest about what is happening to me. Look, there's a time and place for honesty about my AAC, and it's usually pretty obvious where the line should be drawn. General friends, acquaintances, and neighbors are not usually treated to a full rundown of my symptoms-that would probably make me as uncomfortable as it would make them. But if someone close to me asks the question "How are you feeling?" and I think they actually want to know, I'll be honest.

 

A lot of these prompts have really been coded questions about disclosure-who do you share with? How much do you share? When do you share it? As with anything else, I look for clues in my audience. It's not my goal to make anyone feel discomfort. But I think it's important to note that at least in my experience, my honesty has been rewarded in kind. I feel that my friends and family members are more likely to tell me things, potentially personal things, about their health. Keeping in mind that this is a group of people who have never shied away from bathroom talk, I still think that some kind of embarrassment barrier has been removed. That is great. If my AAC talk initiated any kind of de-stigmatizing effect in terms of talking about growths, lumps, bumps, hemorrhoids, or stomach concerns, all the better.

 

So if you come over for Thanksgiving, I won't bring up my AAC unless you ask. But if you ask how it's doing, be prepared, because I'll tell you.

Post #70: I never call BS on ranting

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

Won't you come join me? Pull up a chair, plenty of room.

 

Le Prompt: Call BS on something. What's something that is just ridiculous?

Well what do we have here? Another prompt that requires RANTING? OK!

 

 

I think this list requires a rating system; let's say 1-5 pooping cows. Obviously, the more pooping cows, the more bullshit. To the list!

 

5 Cows: Plug your nose holes

 

Doctors who say they can "fix" or "cure you

I was trying to figure out where my extreme distrust of gastroenterologists came from, and one of the reasons that I came up with is that pre-diagnosis, in the IBS days, 95% of the doctors I visited, be they gastros, internists, or even naturopaths, assured me they knew what was wrong and they knew exactly how to fix it. They had ideas, and plans, and a confident air of expertise. They all failed.

 

Maybe I wouldn't have raised my hopes so high if they hadn't been so sure of their ability to correctly diagnose and treat my problem, but every time I was left in a deeper and darker hole than when I started. One gastro, after prescribing 4-5 medications (bear bile, anyone?) finally looked away from the computer screen, propped his elbows on his knees, and said, "Well, I'm out of ideas." So what should I do next? "Maybe go see a different gastroenterologist." Thanks! And the saga continued.

 

Now, I don't think any of these doctors would have fed me the same lines if I had a Crohn's diagnosis-they're not quacks. But one of the reasons I like my current doctor is that he has never claimed to have all of the answers. He said in our first meeting that treating Crohn's is an ongoing process, and it would probably take some time to find the right medication combination that would give me the best symptom control. And that has always been the goal: symptom control, remission, quality of life: actual potential positive outcomes with this disease.

 

I'm still working hard to trust him, even though he has never tried to sell me a promise I know, deep down, to be false. It is, like the Crohn's, an ongoing process.

 

4 Cows: Grab a shovel!

 

Medication side effects that are worse than the actual disease

For serious. In the early days of taking one medication, I had this actual thought:

 

Untreated Crohn's is preferable to this drug.

 

Let that sink in. Crohn's is bad enough, but add in a laundry list of super fun side effects and the party JUST KEEPS ROCKING. Now, nausea and diarrhea (ironic, no?) are one thing, but then add in the really scary potential side effects: lymphoma, heart failure, fatal infections.....it's enough to make you want to crawl under a rock and suck your thumb. Beyond worrying about cancer or catching pneumonia, there is the great known/unknown conundrum. I know how crappy I feel with untreated (and, sometimes, treated) Crohn's-how exactly, and in what ways, will I suffer with new medications A, B, or C? It's never an easy decision to decide to cast your hopes on a medication that will potentially (and in my experience, frequently) make you feel worse than when you started, hurting you as it's "helping" your disease.

 

3 Cows: Fertilize those flower beds!

 

Colonoscopies

In the world of Crohn's, you'll hear this a lot: colonoscopies are the GOLD STANDARD of diagnosing and monitoring the disease. It's the best way to know what is going on up in your digestive business; sure, an MRI can show inflammation or strictures or obstructions, but nothing beats getting up close and personal with your mucosal lining with a camera attached to a giant hose. Here's the deal: WHY HASN'T ANYONE FIGURED OUT A BETTER WAY TO DO THIS?! Yes, there are those little pill cameras you can swallow, but it's not the same.

 

Dear science: first, focus on the cure for Crohn's thing, that's muy importante. And while you're doing that, I guess find better Crohn's treatments with fewer side effects and less toxicity. But if you have time, and want an extra credit project, can you work on creating a less invasive test to scope out my AAC? Maybe a "Magic School Bus" style shrinking ray for my doctor and a tiny colon submarine? Thanks.

 

2 Cows: Collect those Rocky Mountain oysters!

 

Insurance

Having to worry about getting and maintaining coverage if you have a pre-existing condition?  Let's work on that.

 

1 Cow: Mooooooooo

 

Fatigue.

I really, reallllllly have to call BS on Fatigue. I know it's a symptom of my disease, and actually of some of my meds, but I would like to get through the day without having to take a nap. I would like to, say, attend a yoga class (where I worry about colon explosions a lot of the time, btw) and know that I have enough energy to complete the class AND stay awake for more than an hour after it. It's frustrating to only have energy in fits and starts.

 

All of the things on this list are bullshit worthy. You know what is NOT bullshit worthy? The fact that this is my 70th post. Holy crap. Through flares, brief periods of remission, colon explosions, new meds, old meds, and now a month of daily blogging, my ass (and my AAC) has been writing post after post. Thanks for reading about the goings on in my colon, and I hope your own AACs aren't angry at all.

Post #68: I am not FB friends with my AAC

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 



You went out for "thirsty Thursday" with your friends?! You have opinions about the election?? GET IN MY PANTS NOW.



Today's prompt: Should people post about their (or loved ones) health on Facebook? Why/why not?

 

Oh, Facebook. Home of sunny vacation pictures, carefully staged food photo ops, and babies of varying degrees of cuteness.

 

I was a latecomer to the FB game; I joined after the initial frenzy, and as a result I have a reasonable number of "friends" (i.e. not over 500). I can't imagine broadcasting news of my AAC to even that pared down list, let alone a collection of hundreds of virtual strangers. I'm not going to judge people who do post about their IBD, but I am not comfortable talking about mine on FB. I don't even "like" Crohn's organizations or blogs. I don't want people to know that way.

 

Here's the deal: FB is mostly about three things. First, it's where you go to show how awesome your life is. People post engagement pictures, wedding pictures, new baby pictures.....FB has replaced old timey life cycle announcements in newspapers (unless you are super fancy/loaded, in which case you will always have the New York Times wedding section). In my baby book, my mom cut out my birth announcement from the local paper; that was how her friends knew I had been born. Today, she would post a picture of me in my little hospital blanket and baby hat on facebook minutes after I was expelled from her womb.

 

Second, Facebook is also the home of the "humble brag." I was reading an article in a lady magazine when I first encountered this term, and it's so freaking applicable. A few examples:

 

1.) My back is so sore! Loading those pallets of diphtheria vaccines for Doctors without Borders can sure tire a girl out!

 

2.) Marathon training is hard, but I'm doing it for cancer research! It's a good thing my new boyfriend Steve, the doctor, is there to help bandage my wounds and rub my bloody feet. Thanks honey!

 

3.) Wow, my new job is hard. I don't have time for a social life, but I guess traveling the world for the Gates Foundation and ensuring that all of the earth's children have access to clean drinking water is worth missing a few happy hours.

 

People have become MASTERS of the humble brag on FB; it's natural to want to share the details of your fabulous life/job/relationship, but you don't want to be an asshat about it. What you realllllly want, of course, is validation about your (awesome!) life experience in the form of a virtual thumbs up.

 

Finally, FB is the place to demonstrate your highly attuned social consciousness or offer biting tidbits of social commentary. It's the new place to show off your smarts. This became glaringly apparent during the elections, when suddenly every single FB friend turned into Thomas Friedman, offering solutions to fix the economy and bon mots about the quirks of the American electoral process.

 

So. If FB is about sharing awesomeness or humble-bragging or proving that you read stuff, how exactly does Crohn's fit into that mix? Here are things you will never see me post on Facebook:

• Going in for my colonoscopy-who spent 18 of the last 24 hours having explosive diarrhea? THIS GIRL!
• Just got back my weekly blood work-I am the inflammation queen! #blooddrawallstar
• At least all of this medication related hair loss is making my hair easier to style! (SMILEY FACE)
• Had to cancel lunch plans -sticking with toast and Gatorade today! Whooooooo!
• 3 doctor's appointments in one week? How did I get so lucky? AWESOME SAUCE!

 

Ok, I don't really talk like that, but you get the point. These are not momentous life events that I want to share-these are frustrating, everyday occurrences that don't merit posting on the FB wall of awesomeness. Unless my AAC wins a Nobel Prize while vacationing in Tahiti with Colon Firth (ha!), you're not going to hear about it.

 

When I first got diagnosed, I briefly toyed with the idea of making some grand announcement on FB, because I knew my friends and "friends" would offer kind and supportive words, but ultimately I decided that this was one thing I was going to keep private. I choose to do my over sharing on an anonymous blog. A few friends know about it; if they want to know how my AAC is faring, they can come here. If not, they can read my status updates about the election. It's their choice, and that's important.

Post #60: An AAC on Halloween

Luckily, I have an AAC. Thanks Crohn's!

Boo hiss.

My colon is angry today. I've had to cancel plans with two different people. I thought I could "tough it out" or "power through" or any one of the many different cliches for sucking it up and going through life despite having a wayward digestive tract.

I thought I could order a sprite at the restaurant and at least get some face time with a friend who I haven't seen for a while, ignoring the delicious smells and sights of real food all around me. I wrapped up her birthday present and bought her a funny card, in preparation.  Alas, my AAC had other plans, and I need to be near a bathroom.

I can feel my guts getting ready for round three, so I'll keep it short: THIS SUCKS. Lately, I've been doing my best to pretend that my Crohn's is not a problem. I decided to delay the scary new meds. I've been working out. I've been thinking about making plans, commitments.

And then a day like today: a day where I can't leave the bathroom, and then don't leave the couch. A day when it feels like I have a fever, even though I don't. A day when I want so badly to do things that make me feel normal: order food at a restaurant, spend some quality time on the treadmill-but just can't. A day when the realities of this disease wash over me, leaving me sad and spent.

It's been raining here, a strong, steady rain, like the kind they use on relaxation tapes. Sometimes I imagine myself standing outside and letting the rain wash the disease away from my body, like an impurity that can be cleansed and purged. Then my stomach gurgles and heaves, and I know it's not, and will never be, that simple.

Before this post becomes anymore depressing, I think it's time for adorable pictures of pets in Halloween costumes.

I'll get you my pretty! And your little dog too.....oh wait.

This is kind of genius.

Harry Potter cat is displeased. He will be shedding his costume in 5.....4......3......2....

Pugtato!

I just found my next Halloween costume!

Gah....so cute! It's probably a good idea to dress them up while they're too young to maul you.

Ok, I feel better. And, silver lining, thanks to my AAC this will probably be the first Halloween when I don't eat half of the candy from the bowl.....

Happy Halloween!

Post #49.9: I brake for fake crab

 

You win this round supermarket sushi....

Yesterday, I was paying bills and shopping and going to appointments and going to the bank and getting gas (for my car, I feel like I have to specify on this blog) and being social and returning phone calls and writing emails and giving advice and NOT napping and making plans and doing laundry and laughing and buying presents and EATING ALL OF THE THINGS.

I had a great three days on steroids, and I got a little cocky.

A lot of carbonated beverages, supermarket sushi, chocolate sorbet, deli salad, and almonds later, I paid for my hubris. You know that stupid saying "a moment on the lips, a lifetime on the hips?" I believe the Crohn's version of that ditty is "a moment on the lips, a lot of bathroom trips!" Or, more accurately, a lot of painful uncomfortable bathroom trips wondering WHY DID I NEED TO PUNISH MYSELF WITH  BY EATING _____________(insert offending food of choice here)!?

As I shuttled between bathrooms (variety is the spice of life) this morning, trying to take deep soothing breaths as my bowels twisted and snapped like virile rubber bands, I pondered this very question. On the haunted toilet* I lamented the fish stew I ate out at a restaurant. In the vindictive spider powder room** I bemoaned the waffles that seemed like such a good idea the morning before.

I was looking at my steroids, and the ensuing regularity, like a vacation from Crohn's. I deserved a break! And on vacation, who sticks to white bread and Gatorade?

I felt normal. I had energy (granted, a little too much energy, but who would compain about that!? I was getting shit done). I had the time and mental clarity to do the things I enjoy, and those things include eating. I remember thinking to myself, this is how it should be-this is what I am working towards. This is what I hope is possible again. I thought that this little interlude would give me the inspiration, the motivation, to stick with the new medication through all of the terrible side effects, in the hopes of getting to this place without steroids.

And this morning, it all came crashing down, in a most painful, explosive fashion, and I was left exhausted. Did I just ruin steroids for myself? I am such a moron. To explain how I got to this place, and how I may or may not have broken the steroid's magical ability to tame my AAC, let me try to explain how it feels when the steroids work.

Imagine that you've been sick for a month or two. You have no energy. You spend your days sleeping, eating things that are beige, and watching the new crop of daytime talk shows that are jostling to replace Oprah (I'm looking at you Marie, Ricki, and Katie, not to mention Anderson, Jeff Probst (??), and Nate. Side note: Katie Couric is a serial blinker. It's seriously exhausting and distracting to watch those eyelids fly. Someone get that chick some drops!). There is pain, nausea, and fatigue. There is considerable time spent in the bathroom. Early in the day, you are spent. Sometimes you're dizzy and your muscles quake, and you feel breathless. There is dehydration and heartburn and some super fun medication side effects that make you feel bloated and sweaty and wrong.

That's about right. Replace beer cans with pill bottles and add a sports bra.

THEN. Oh, then. You take a handful of the good stuff:

A spoonful of steroids make the Crohn's calm right down, oh, the Crohn's calm right down, the Crohn's calm right down....

And suddenly, it's like someone shoved a spark plug up your ass and you turn into this:


I can run on the beach! My quads have DEFINITION. I CAN EAT ALL THE THINGS!

If you've been miserable for long enough, your brain can be excused for wanting to jump on the GOOD HEALTH NOW, COME AND ENJOY IT! band wagon, even if a small part of you knows the medicine might be making false promises.

If you think that I'm overstating the change-from Homer to bouncy chick in a matter of days-that's really what it's like. It's overwhelmingly deceptive. Every part of you wants to believe that the preceding days (ok, months) were a bad dream, and you've finally been restored and rebooted. Every part of you wants to use these days, enjoy them, because steroids are a limited time only hall pass from the crap that is waiting for you back in real life.

So I guess the point of this post, if there is one, is that today was a bad day, and I both blame myself for making it that way and understand why I did.


*it makes haunted noises when you flush
**a medium sized spider has been doing gross spider laps around the edges of the ceiling but comes to stand over me when I need to do my business, thus making me fearful that he will drop directly on my head and causing awkward pants-half-mast crab walks to the haunted toilet (not to be confused with the passive aggressive spider who used to live in the mailbox)