Crons, Crones, Chrons, Cronhs, etc.

Radiolab has a new podcast up!

Guts

Yep, it's all about our glorious bowels. When one of my old college buds linked to it I clicked over to the site, thinking, damn, they might just do a story on IBD. And I wasn't disappointed: part 3 of the podcast is all about a dude who has Crohn's disease.

It never fails to amaze me how many people misspell Crohn's disease, but even as a self-professed lifelong spelling-and-grammar freak (yes, I WAS that annoying kid who won a lot of class spelling bees. It was all for the fame, glory, and whores, you understand) I must admit it's a strange, unintuitive word. But then, it was named after a person, so.

I get a range of responses when I tell someone I have ulcerative colitis. Usually I have to preface "ulcerative colitis" with "a chronic disease" so that people don't think I'm talking about a class or current events, but after that I get some knowing nods, some pretend-knowing nods, and some What's that, exactly?s. Occasionally I get a JFK buff who tells me all about Kennedy's intestines and steroid use and whatnot. But I think both diseases have a ways to go before they're household names. I'd rather UC/CD/IBD didn't become such common diseases just so everyone knows what the hell I'm talking about.

Really I just want more attention for ulcerative colitis. Crohn's, Crohn's, Crohn's, big deal.

In any case, the Crohn's part of the podcast reminds me a lot of how I felt during my surprise 2010 flare. I'm fist-bumping (fistula-bumping?) you through the computer, guy.


In other news A. and I are watching Breaking Bad. We're finishing up season three, and Bob Odenkirk is KILLING me.

More (worm) food for thought

From Science Magazine, more of what we know:

Western Diet Tied to Intestinal Disease and Allergies

*waves* Hellooooo, bacteria. Come on in. Let's face it, you can't be any worse than my latest fungal infection, can you?

Unrelated and purely for your enjoyment:

"Ira Glass" is now available for a buck via Adam War Rock and the Infinity Watch.

Famous colons you may know...

So sometimes I troll the web looking for famous people who have IBD. I figure, hey, if Beth Orton can kick ass and make records, I can take my pills and drink a little extra tea to stay awake.

Mike McCready I knew from A.'s astounding LP/CD collections and the CCFA commercial.

Alfred, King of Wessex? Lived to age fifty and known as the "Scholar King" or, when he was feeling a bit knotty in the guts, "Alfred the Great." Subject of this film.

There seem to be a lot of politicians or politically-connected people with IBD...we just heard about Tony Snow a while ago, and of course JFK (the universal acronym president) suffered from colitis among other things. While I like discussing politics and politicians, preferably with some quality beer at hand so the opinions can be as free-flying as possible, I've no desire to enter the field.

On the whole, I have a little more respect for some of the famous IBD-sufferers.

But sometimes, like the Dwarves of Moria, we dig a little too deep.

I've heard plenty about Neal, and Jebbers, and our dear dear Georgie W. But where's Marvin?

I guess Wikipedia will have to do. They don't seem to know much either. CCFA has the support of Barbara and some details about his condition. Me, I'm shocked to learn about the existence of yet another Bush, and that my speculations about "conspiracy theories" suddenly include him.

New York, New York

A. pulled up to the car rental entrance at the terminal. I dashed in and waited while the counter guy swiped my credit card and paged through his papers.

"Would you like a Chevy Trailblazer or a Ford Edge?" he asked.

Trailblazer... I thought. SUV. I requested a economy size. Ford Edge. That sounds kinda smaller. Edge. Edgy. "The Edge," I said. He passed me a couple of fat keys. "Row X, 78."

I ducked into the garage and hurried down row X. The cars seemed awfully...big. But no, there was an Alero parked here, a Sebring there....and there was space 78.

I ran back inside and waited for the counter guy to finish helping two girls squealing over their Trailblazer. "I reserved an economy size?"

"I'm all out," he said.

We got in about midnight to find our friends playing the Roxanne game with Coors Light, Grolsch and one sadly wasted six-pack of Newcastle. Must be one of those NYC things, A. said, and we joined in.

The beer and my gut did not get along.

We went to Central Park anyway. The bathrooms had no toilet paper. But there was this...




...to admire.

We got to Washington Square Park and my gut finally wheezed defeat, so I ran for what looked like a bathroom. Inside a short, spindly cleaning woman stood between the stalls, holding the doors shut and rasping away at an occupied stall.

"It's Mother's Day. You think I want to be here? I can't leave until I clean this place up."

"Christ Jesus," came the voice from the stall. "What a world. Can't even shit in peace."

"Are you closed?" I asked, once I was safely inside my own stall with the door braced shut.

"No, honey," the cleaning woman said. "You go ahead and go. Mother's day." She muttered to herself for a few more minutes. And try as I might, the moment was over and the urgency back up somewhere behind my liver.

It took some serious pizza and one of the smallest bathrooms I've ever braved to regain equilibrium. I filled my purse up with napkins and waited for the next attack. It never came.

So I had some of this.

It was a very long ride home in the Edge. At least we had cherry slices.

"And lo, with shrieks, evil spirits came out of many..."

We interrupt the diet entries for a quick word from our sponsor:

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*results may vary. Stick here, then sign there.



My opinion? The giveaway about Prednisone is all in the rhyme. Pred rhymes with dead. Or if you like, Prednisone rhymes with deadnisone. (or Dead Zone, if you dig the King.) Either way, when dead pops up anywhere in a sentence, I certainly pay closer attention, while trying to appear like I WAS listening and secretly wondering what the hell I missed that merited the introduction of "dead" to the conversation.

Anyway. Prednisone, or prednisolone, is a steroid, or a corticosteriod. It slows production of and replaces the body's natural steriods, which is why it can hurt you to stop taking it suddenly. For ulcerative colitis, it smashes down on the immune system to keep it from attacking the sufferer's colon. A.'s mom told me once about a woman she knew who had been taking it for UC for years. The description of personality and appearance of health was not pretty. My own mom works as a pharmacy technician, and she warned me of all the threatening long-term side effects of prednisone. "Hey," I said, "It's only for a couple of months, I think. And I feel so much better! You have no idea."

In my case, short-term use resulted in glowing gorgeous skin, a bit of hair loss, and absolutely no blood in my toilet when I did the dutiful inspection. I felt high, exuberant. I raved about the effects to A. and he was happy I felt so great.

Long-term use, in my case meaning after two months into the drug, allowed the pred to show its teeth. I started going to bed earlier, but I could not sleep and would just lie frustrated and legs twitching, while A. snored away beside me. Whether the strange aggravations I felt were due to sleep loss or directly from the pred, I don't know. (I never tried to suffocate A., though, I was only trying to help him stop snoring.) More hair fell out. My skin changed from glowing to kind of poxish. I felt tired and ravenous most days, and gained weight quickly. My face swelled and sort of dropped - moon face is what they call it, I think, and everytime I looked in the mirror, I felt worse.

But the change to my mental state was without question the worst side effect.

I freaked out about anything. Being the primarily passive-aggressive sneakball I am, I was less harmful than I could've been. A. dealt with the most shit, which included the popcorn incident, crying jags, screaming fights about a miniscule peanut butter smear on the counter, and no fantastic make-up sex after said fights as my libido had dropped through the sub-basement alongside my personality.

I can't believe he's still around. I must be FANTASTIC in many, many ways when I'm properly medicated.

Anyway, the short NYT version of this is: Prednisone really is the devil. Seriously! The glowing skin, the exuberance, the obviously negated evil ulcerative colitis symptoms, all when someone has a chronic disorder; obviously there must be a red right hand involved! But "devil" and "demon" don't rhyme well...I may have to rethink my judging justifications.

I might take it again someday. If you gave me piles of money and cinnamon bears.

More on diets (and Batman, for real this time) coming soon.

Holy processed glop, Batman!

A week after the doctor diagnosed me, I met with a dietician to discuss eating habits. She was friendly and smiley like a high school school council president. She had a nice office, with pictures of deer and a food pyramid graph.

"This is really a lifestyle change for you," she said. "Don't think of it as a diet, because you'll never get started."

She passed me some papers. I read the title on the first few.

Bland Diet. Low Residue Diet. Low Fiber Diet.

The dietician got out a notepad. "First, let's set you some goals. What would you say are your most important goals for eating right?"

"Um. Eating stuff that won't make me crap blood, I guess."

She frowned. "Can you be more specific?"

"I eat a lot of chocolate," I offered, feeling like a jerk after a few minutes of silence.

"Okay." She wrote down Go easy chocolate.

"And coffee makes me run. Um. With my legs, not - um. Look, this is pretty new to me, so whatever suggestions you can give me would be really helpful."

She scribbled away for a minute, and then handed me the paper. "Okay."

1. Bland Diet
2. Low residue/low fiber diet
3. Go easy chocolate
4. No coffee
   

"Try the foods on those lists and see how they work for you. Your eating patterns will start to vary and that might give you some stress, so take it slow."

As my eating patterns normally fluctuated between the ramen and Cheetoes groups, I could definitely foresee some major stress coming. I studied the sheets. The Bland Diet seemed to consist of white bread, rice, and applesauce, while the Low Residue had little to no roughage.

"Aren't some of these foods unhealthy?"

"Maybe from a general perspective, but we're concentrating on digestion here. Applesauce instead of apples, because it's easier on your gut. And you don't want to stick to these religiously - mix it up a little." She made a pot-stirring motion with her hands. "Try different foods and see what works best for your body."

"All right."

We made plans to meet again in a month's time.

...

Leg - still weird. Brain - was there ever any doubt?

I've decided that my future painkiller use should be monitored. Therefore, next time I flare my way to the ER or find myself lying sideways in a hospital gown, the notebook or the laptop will be there, too.

My last trip to the ER, I got a fabulous nurse with a bottomless pocket full of morphine, an ER doctor with the hairiest hands and chest I've ever seen (bedside manner lost fifty points before he spoke, but he failed the belly-prodding test as well) and a saline drip. The morphine was wonderful, but I can't really remember how it felt. Just numbing, I guess.

For my first and only Grand Colon Tour, the nurses gave me a cocktail (that word, I love it in this context, though it needs something as effective as Molotov or gin before it to really get me going) of Versed and Demerol. According to the ineffable Internet and my nurses, Versed induces "conscious sedation before surgery to relieve anxiety and/or impair memory."*

I salivate at the thought of Versed. That is how good it was. At least, for me, and mixed with the Demerol. It did not dull all my pain, or the slightly patchy memories of lying on that procedural table, but it turned off the care switch in my brain. Nothing mattered, and moving seemed overrated. So I probably wouldn't be able to type, or write without stabbing something.

"Here comes the injection. Feels fine, slight burning sensation. A nurse gives me a waiver to sign. Haha, wait, I've changed my mind. Signing waiver...hospitals are boring, but I'm a little nervouajfdfddeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Drool, drool, drool.

Okay, so the after-effects were awful, but Versed plus Demerol minus invasive procedure equals incredible relaxation. And hey, look, some creative types figured Versed would make a super rape drug because of the induced amnesia. Oy.

I think I'll ask to be put completely under when the Grand Reunion Tour comes around in a few years.

In other news, the American Library Association publishes this. Thank god for obvious signs; ne'er will I doubt my professional path again.


*Link

Isn't that precious?

When I was little and we had jellybeans,

(everyone should mistrust stories that start out like this, normally, because they either evoke this air of starving gentility and Scarlett O'Hara beating her fists into the earth, or your grandma talking to you about something while you watch television most un-surreptitiously over her shoulder, in the days before you learn to appreciate things like that, but this story is actually nothing like that! It's good! Find out! Keep reading!)

I would pretend they were pills that I had to take, to cure whatever wasting Romantic Illness I had contracted. Mom says that any amount of actual medicine taken in such quantity would've been fatal in and of itself. I still maintain the potency of the pills was quite inadequate for the ferocity of my pains. And the bag of jellybeans or mini-eggs or fruit snacks would gradually flatten, and I'd run around outside for about five hours.

The weird thing is that these days, when I take my handful of actual weaponized pharmacologicals, I know my liver and spleen and whatever other gizzardy sweetmeats filter me out are rotting away inside under the chemical overload, and I still (sort of, somewhere, parenthetically) enjoy the takin' of the pills.


There is something too false about a confession like this - it feels TOO confessional, but (unlike a little girl who can't help spilling the beans about Mom's Christmas present stashed in the garage) contrived. But it's troooo.

(Now would be a good time to tell you I'm planning on printing this out and sending it to Post Secret. Damn. It isn't short and snappy and sloganified enough for that. Maybe with extra small font...)

The after-Easter jellybean sale will get me through this hard winter, and I'll never go without treatment again.

"And I was like, suh-WEET."

I am going to take this every wrong way possible. Liver problems? What liver problems?

Blue Agave and IBD, that Heady Mix

It's going to be one of those nights.

Hoo boy.

Today was my coworker E's last day. We ordered nine silver trays of Indian food from the restaurant down the street and stood on the sidewalk in the drizzle, waiting for our ride back. The smell alone (it crept all over me, I think that my coat is completely and irreparably [deliciously] smelly) was enough to get things roiling. But just to make sure I had two heaping plates of butter chicken, hot-hot eggplant and lamb curry. I like to play this little testing game with coffee, too. You never know. One day, the shits may not come.

Found an old article today about Lialda, the newest treatment for "active, mild to moderate ulcerative colitis." Mild to moderate means, I think, NOT pancolitis? But it's a once-a-day regimen, as opposed to the horse-pill-gobbling that Colazal necessitates. Side effects include:

1) Flatulence (really, how can they be sure about that with UCers? A. makes a point of telling me that my UC had NO exponential effect on my flatulence...)

2) Acute intolerance syndrome - which exhibits very UC-ish flare symptoms, so how you would tell, I have no clue.

3) Headaches, yo! Why do all mesalamine drugs cause this? I'm gonna leap and say it's probably not from an increase in brain power, but I've been wrong before. Wait.

And for some new information (to me) about "mesalamine medications."

4) "Reports of renal impairment have been associated with mesalamine medications. Caution should be exercised, and LIALDA should be used only if the benefits outweigh the risks." The fuck?

Luckily for all of us with chronic bleeding asses, Shire Pharmaceuticals (creators/proponents of LIALDA) has this nifty site, Managing UC, in order to better promote bowel care* and take care of their customers** while gaining a lot of insight into what your random IBD sufferer thinks about. (Today: chocolate, books, ass, in any order.)

It's funny. In my first library science course, we had to design and pitch something like this to the rest of the class, a faux pharmaceutical company database of their "patient" information. The biggest question we faced in the Q & A following our presentation?

"How do you keep this ethical, when you're a business and your patients are really your customers, and may be better off with a different medication?"

I am watching you, Shire. Your cutesy hobbity name doesn't fool me.



*Erm. My ASS.
**I dare them to call me their patient. Also, see *.

Flickr Link

It doesn't get any better than this, folks!

Don't touch my lesions, please.

This looks so great. I want to fly to Orlando.

It was not this sharp, ever.

Continued from a previous discussion of Incredibly Awkward Remedies for Crazed Bowel, I bring you one and all, the Rowasa Enema!

If I could play introductory music on here, it'd have to be the Star Trek fight music. You know, the da-da-DA!DA!DA! (etc) tune they trotted out every time Bill Shatner needed to trip somebody, or rip his shirt. (By the way, this is just killing me today.) Ah, Star Trek.
Sadly, I do not have photographic evidence of the RE, so the above montage will have to suffice. The RE has been my companion on a few adventures. I particularly recall some contortions in a bachelor pad bathroom, on a floor wet from showers, my face inches from suspiciously curly hairs...but enough romance, let's get back to basics.

The first time I filled an RE prescription, my CNP made sure I had plenty: I walked out of Walgreens lugging two shopping bags loaded with boxes. I got home and ate some mashed potatoes, sat on the toilet a while and read The Corrections to get myself in the mood for later. I ignored the boxes, which was easy as I'd hidden them in the closet in the bin with scarves and hats. A. would never think to look there in August, I chortled to myself. A. came home, we watched a movie, he ate some pizza, I ate some applesauce, and we went to bed. I waited until I felt him twitch a few times, and then I slipped out to the living room.

"Put a towel on the floor the first time you do this," my CNP had said. "It can stain."
Feeling virginal, I spread a nice red towel on the carpet, dragged out the boxes and slit open the foil packaging. It felt like opening a science project, or maybe some freeze-dried spices.

The bottles were small with little caps. I spread the instructions out and tried to position myself in the least vulnerable way the manufacturers suggested. I gritted my teeth, hiked up my nightgown (oh devious!) and inserted.

"What are you doing?" A. asked.

It may have been obvious.

Mad Hot Bathroom, pt. 1

"Jesus god, strike a match!" A. says as he recoils from our apartment bathroom.

This really works, you know. The sulphury smell covers all hint of evil bad wastes in your toilet.

At work, there is an ongoing debate between everyone about the bathroom situation. As most Colitisites will agree, I'm incredibly fortunate to have a ladies' less than twenty paces from my desk, and the best part is that it's a giant, private single-seater, larger than my office space. The single bit is what most of my colleagues do NOT like.

"Really, it's big enough, we should just set up some stall walls and put in another toilet, because it's so inconvenient," R said.

"Why? Is it that hard to go downstairs? What's the big deal? I think it's nice." I started sweating and tried to slow down. "Um. It's just a bathroom. No problem."

I LOVE this bathroom. Althought there is the wild one, her identity as yet a mystery, who comes in every day about noon and can't seem to tear off toilet paper larger than a shred (which she then deposits on the floor and tries again, till it's a ticker tape parade in there).

There is the woman who, WITHOUT FAIL, comes whilst I am in the middle of a particularly noisy expression; she trips up in her spike heels, raps on the door twice and then without pausing leverages her entire strength and body weight against the frail deadbolt. It faltered yesterday, and I sat frozen with my pants definitely nowhere near my ankles. But she didn't notice her near success, and after heaving a tortured sigh, trip-trapped away again. She sounds light and airy on those heels, but she has the power of a pissed rhino.

There is the mad perfumer, who thinks that if she sprays enough scent no one will know she does what all women do, and there is the avid hand washer who does not lock the door (she's only washing her hands!) and then you rush in undoing your belt while she's lathering up. (Possible porno opener?)

Lately, I've been smelling a whiff of smoke in there. It's not the stale tanginess of cigarettes. Someone, I have not found out who, is Jesus-god-lighting a match to spare us all.

Mad Hot Bathroom, prequel. Or, diversions of the toliet bound

OH GOOD GOD.

Perhaps the sweepstakes will be geared toward IBD kiddos?

And maybe that Crapcake Hotel Heiress will donate all her money to CCFA research.

Can you take my pills? Can you take my big horse pills?

Tumeric! Or Turmeric! Either way, this Yellow Dusty Spice will soon be coming to an intestine near you! (and by you I do mean YOU -insert pointy finger graphic here followed by highfalutin diet advice that no one with a hearty chocolate addiction would deign to follow, much less read past the first "Sure, you can eat _____! In moderation-" and I mean me, of course.)

I would be interested to try this, but as I'm in remission and have been for over two years, I don't think I will wholeheartedly. It's hard to be open to new treatments when you can go to the bathroom and afterwards scream in abject, delirious happiness,
"Honey! Come look! It has shape, and density!" In fact, apart from the potentially mind-numbing side effects, I enjoy taking pills. According to my mom, when I was little I'd divvy up fruit snacks into different doses, take them all at once and make terribly solemn faces about my illness.

(Damn you, Genes. Is this how you get your kicks, or was this an early warning system, telling me that fruit would be a fickle friend in the future?)

My sidekick drug is Colazal. It is a sidekick in every sense. When taken alone, it does absolutely nothing for my gut; the big bad immune system ties it to a chair and dangles it off a skyscraper, waiting for the real shit* to show up. It is also the biggest pill, and doesn't quite know what to do with itself if Imuran dawdles. Unfortunately it does enough punching and kicking to help in the alley fight, so I notice if I forget to take it along. It comes in a giant bag (one that pharmacy workers can never find until I slip them some cash for their trouble) because of my 3-3xday dosing schedule. It's all about size, not stamina, with Colazal.

It also likes to melt in the heat of my hand. Like M&Ms, except disgusting and greasy and not chocolatey at all.

But it lets me eat chocolate on a regular basis, which is good for my stress-free lifestyle. If turmeric can offer a similar compromise, we might be in business.

If not, well, suck it up, liver.



*All off-color puns in this blog are purely unintentional and are sponsored by Baritop.

Format in error. Please begin again.

So I've been following other blogs. Postmodern Sass makes me laugh, but I'm not sure why. Maybe because she says it's all stories and not a really confessional or daily real-life happenings. (Or it could be? But not necessarily?) Obviously I watch Neil Gaiman's blog because he updates almost every day and talks about himself and his doings. (Notice the updating part is higher on my list.) I've fluttered around dooce and petite anglaise and neil kramer, and with each funny story my panic rises. Here is MY blog and there is absolutely nothing of interest on it.

Last night, as I sat on the toliet for the twentieth time of the day, wondering what to blog about and simulataneously wondering if this would end as an Enema Night (and how they deserve their capitalizations!) and meanwhile pondering the relegation of serious self-ponder to Emo kids, and likewise waiting patiently without straining for the, er, faucet to stop dripping...

Eureka! Ulcerative Colitis!

So I'll record all related doings : doctor appointments, meds, issues, single bathrooms vs. multiple stalls, ER trips, furtive purchases, diet restrictions, stress, the stress of consciously trying to be unstressed, and on. I have a fantastic fellow who is more supportive and all-ears than anyone I've ever met, but even he needs a break sometimes, and really, one audience just isn't enough for me. I need IBD-dedicates and sympathizers. You know who you are.

I was diagnosed in 2003 after a very trippy colonoscopy, during which I vaguely remember seeing the insides of my intestines on a little tv, but since I was lying on my side and doped with a lovely mix of demerol and Versed (you dog, you!) I don't remember much except the doctor saying, "Yes. See that? Umm-hmm" and that the lights were pretty dim considering they'd just been bright half an hour ago.

I remember immediately after the procedure, the nurses set me in a chair and someone whom I don't remember properly as I couldn't control my drool reflex, so naturally I was concentrating on that, someone sat next to me and patted my knee and explained things in a really fast whisper. The next thing I heard was my mother, saying my name.

"Are you...you're drooling, honey."

My folks came to visit for the procedure and took me out to eat afterwards. They ate, and I cried into my soup for thirty minutes...I'm not sure, but I think I really wanted more Versed. Then they took me home, and a week later I received a typed, formal letter from the doctor saying, yes indeed, I had ulcerative colitis.

Yay! Positive diagnosis!

So! First question (one that I've asked one nurse practitioner, and she scared the bejesus out of me in an attempt to comfort my fears) : does Imuran cause white brain lesions in some patients? I only ask because of a random study I came across while searching Ebsco at work. Also this morning I had my tea scooped and the water was boiling and I was ransacking the kitchen shelves looking for my mug, and then the living room and the bedroom, and then I came back determining to use a second but equally favorable mug, when I saw that my tea strainer sat upon the mug in question...

Definitely lesions, I think. Too bad Imuran somewhat works well. Sort of.