To beget or not to beget...

I just received my free (!) copy of 100 Questions and Answers about Crohn's Disease and Ulcerative Colitis, the book that you too can get free here. (Thanks to RW at Tummy Troubles for blogging about it.)

A little ways in, the authors mention pregnancy and the possibility of passing UC/Crohn's on to your children. According to them, there's no predictable outcome; your kids could be carriers of the gene and not be affected, and there's always the question of your partner's genetic code figuring into the mix. Which is kind of funny, because A. has told me some side-splitting stories about gut-fun in his ancestry, including one about his dad, a pound of cherries, and an isolated construction site.

Which I will not recount here out of respect for privacy of bowels not my own.

The overall tone of the book is very hopeful. I can almost hear my old CNP, my third health professional who was also the first genuinely helpful one, outline colitis the way she did on our first session: bad parts first and fast, good parts longer and last. This was alternately good and bad in its own way. She got me to think more optimistically about my disease, but because we rarely discussed (and thankfully, had few occasions to do so) the awful side of UC, I find myself flinching when I re-read or hear things like "25 percent increase in risk of colon cancer when the entire colon is involved" and "newborn diagnosed with ulcerative colitis" though that last is pretty rare, I think.

It's not that I want to my doctors to blackout their windows and greet me with foaming blood capsules and bags of peeled grapes. I like to think positively about UC, and about the cancer that probably looms in my future, and about having children, even if I don't really like kids generally.

Because, parenthetically speaking, my children would of course be AWESOME.

A. refuses to discuss the subject because he says I change my mind about it too often to have a decent, reasonable argument. But I wonder if he sometimes has second thoughts about our relationship: if it's hard to deal with me when I have a flare-up, how would he handle a child with the same problem? Back to the point, I don't want to be told to prepare myself for the hard times ahead every time I shell out an office visit copay, and doctors must know that better than anyone.

But I love scary movies. That's scary, which does not always mean senseless gorefest a la Captivity. (Yes, the girl who enjoys They Live and Black Christmas and The Last Man on Earth does have some standards, but the publicity campaigns for Captivity seemed to have none.) Scary encompasses thriller, splatter, cornball, psychological and gothic horror. And this love of being scared could explain my magnetic attraction to UC and medication side effects lists.

Besides, what's freakier than being stuck in 28 Days Later or any apocalyptic zombie flick, for that matter, without your UC meds? Nothing!

Achy breaky colon

Anything I say about Billy Ray Cyrus could only help his career, so I'll keep my mouth shut.

Last night we cleaned out the fridge and I ended up eating a slab of no-bake oatmeal chocolate cookies. Gutwise, this was a problem anyway, as a slab of anything now equals a giant flashing DANGER, but sadly, the no-bake did not fill me up. So I made a batch of popcorn. With butter. And garlic salt. And shredded cheese.

My gut feels like the bacteria have declared civil war and are duking it out with Uzis.

In completely unrelated news, I seem to be stuck in a weird, inexplicable rut weight-wise.

This isn't necessarily a bad thing, since IBDers can have crap problems with weight gain. But eating slabs of cookie does not a healthy body make, so I'm on the lookout for new, unobtrusive di-er, lifestyles that won't set off the ulcerative colitis but WILL make some of the cookie-slab-chub dwindle away.

This looks interesting. A co-worker of mine owns the book, and lent me it. Invented by a doctor named Peter D'Adamo, (which reads like Adama...waves of trust are flowing into me) it bases your diet on your blood type and, consequently, your ethnic heritage. You get to feel special and singled-out, and you get to eat a certain, special singled-out kind of way. Most of the dietary suggestions seem healthy and balanced, especially if you're a B-, which I am. (Suddenly I feel so safe and classified! Hurrah, I'm special!)

However, Bs are not supposed to eat corn. Corn equals demon seed for Bs.

Oh, Doctor D'Adamo. You almost had me!

It's time for today's entertaining headlines!

Intentional or not? You be the judge.

IBS and Restless Legs Syndrome Linked

Constipation Costs may be Straining the Healthcare System

The second is definitely my favorite. I'm going to vote for "intentional" on that one.

Don't you know I have the INTERNET?

Last Friday I saw my gastro.

We have a very formal relationship. I come in and sign my name at the sliding window, write out a check for my copay, page through a couple magazines, and then he summons me to the last office on the left. His office is very cold and clean, and it smells like freon even in the winter. He sits down behind his monstrous bare desk, which takes up half the room, and thumbs through a single manila folder with my name on it. On the window ledge there is a pop-out rubber model of a liver squashed atop a pile of intestines. A medication brand name is painted in pink across the liver. Otherwise, the ledge is bare.

This is good, I tell myself. This means he's probably not prone to leaving instruments inside patients. Which wouldn't matter since he won't be operating on me any time soon as he is not a surgeon. He turns some blank pages and looks up at me. He never smiles. If I make a joke, he pulls the non-laugher trick from Seinfeld. Oh. That's funny.

"So how are you feeling?"

I explain the sedated feeling I've been having for...well, for a while now.

"Hmm. I've never heard of that as a side effect." He steeples his fingers and stares off behind me. "Well. You could always drink a lot of caffeine. Coffee, Mountain Dew."

I tell him that once drunk, coffee spends a nanosecond inside me before bolting, and that I'm trying to stay away from soda as it is soda.

He writes me a new Imuran prescription, I go to the pharmacy downtown and spend fifteen minutes finding necessaries such as flip flops and Yuengling. I drive home and rip open the prescription bag and read the side effects blurb:

All I need is Google! That's all I need!*

(Granted, it is a ways down the page, under What side effects may I notice from receiving azathioprine (imuran)? Side effects that you should report to your prescriber or health care professional as soon as possible. Yep, that's it: unusual tiredness or weakness.)

On the positive side, he was encouraging about my idea to gradually lower the dosage of Imuran from 150 to 125, whereas my previous NP pretty much bitch-slapped the thought away.


*Okay, so as the Eckerd link is no longer happy, I've posted a new one.

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.

Stop the Presses! Caped Crusader Consoles Colitis Crybaby!

Continued from Holy Processed Glop, Batman!


By day 5 of the Bland and Low Residue Diets - which seemed, in my opinion, to have entirely too much overlap - I was ready to throw the proverbial towel in the overflowing can.

It was the end of my final undergraduate semester. In Conversational Spanish my tummy rumblings sometimes drowned out the professor. My roommates and I ate as much macaroni and ramen as possible. I did not sign up to walk for graduation. A. and I planned our joyous communal living arrangements in Paradise, Minnesota.

Stress? Oh, yes.

When the Winged Vigilante knocked on my door, I was trying to eat a bowl of applesauce, (my third that day) tears running down my nose and mixing with the mush. Stop crying, I ordered. The added salt can't be good for the colon, can it? Apparently, when I was diagnosed with UC my tears ducts mutated into big crybaby canals.

Through the haze of emotion and lacy curtains on the door's window, I glimpsed the shadowy spikes of bat-ears. The rapping increased in volume substantially.

"Can you get that?" my roommate called from the bathroom. "He was rattling the window here, but I locked it. Pervy bat."

I pushed the applesauce to one side, stood and opened the door. He filled the kitchen with shadows, and I reminded myself to check the wattage in the bulb over the sink.

"Good evening," he said, in a low voice neither affectedly raspy nor booming with flamboyance.

"What's good about it?" I sobbed.

He cocked his head and put a ear through the recently patched drywall in the corridor. There was a screaming burst of static, and the Bat clapped a hand to his head. The static cut out. I had a strong suspicion that some expensive piece of equipment had just perished.

"Anyway," he said.

"I said what's good about it."

"Oh. Right. Well. You're looking...whole. No stabbings. No robberies or rapes - er. That's attempted
robberies or rapes."

"What about a feeling like someone's twisting a knife in my guts?"

"I don't cover dementia, lady."

I picked up the applesauce bowl and threw it at him, hoping he'd batarang it or something. Instead it missed him handily and slammed another dent in the drywall.

"So what do I have to do," I asked, "show you my colonoscopy video?"

"No. Just take this."

A white square of card stock fluttered out of the blackness of his cloak and into his gauntlet. He thrust it into my hands, and then opened the door. I turned the card over. It was blank.

"Wait!"

He paused on the front stoop, his hands full of black cable that stretched straight up into the darkening sky - somewhere, connected to something.

"Are you really Batman?"

He grimaced. "In Minnesota? Are you kidding?"

He flew into the night.

The cape whacked me in the nose as he took off.

Sniffling, I went back inside, blocking out my roommate's howls as her feet found the applesauce. Why would Batman give me a blank card? Was I supposed to take it as some sort of stupid business psychology American-dream lecture where I fill the card with my own super self-confident credentials? A big tear splooged off my sore nose and plopped on the card.

Crawling black strands grew out of the wetness. They twined into the shape of an O.

O. Must be a Batman thing. Time to call the Comic Book Guru.

Or maybe Batman just thought I should follow the bland diet and eat some wagon wheels. I went and boiled some pasta.

....


To be continued?

BAHAHA

I've been in search of such direction...

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.

It's probably too late to AVOID those chronic diseases, but still...

Nifty article from NY Times, Jan. 28, 2007.

"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.

...

Side Effects Vacation

I've been feeling extremely tired lately. Part of me blames the increased sunlight, while other, snarkier parts cough and point to the nightly congregation of parking lot yappers our apartment complex attracts. Finals are wrapping up, so kids are partying. But ultimately I'm pretty sure the culprit is the Imuran.

I read other UCers' medication testimonials and no one seems to be on more than fifty milligrams of the stuff, while my doctor started me on 125 and moved up to 150. The sleepiness would bother me more if I could remember when the hell I last had energy (as I am by inclination a proponent of La-Z-Boys and ice cream comas), probably in high school when I was still actively interested in batting tennis balls. I was under the impression that higher levels of Imuran fuss with liver function and pre-cancerous thingums.

Speaking of pre-cancerous thingums, A. and I have plans to drive down to the city this weekend. I am rehearsing my mouth-cancer images for after the first margarita and the scratchy smell of matches. However, my reasoning breaks down right about then:

A Typical Progression as the Second Pitcher of Belchfire Margaritas Sloshes onto the Table

1. This margarita has more alcohol than my whole apartment complex
2. Alcohol is bad for the liver - oh, hey, chips
3. Liver, liver, liver...paste? Bah, rich bitch food
4. Liver function! My liver is rotting. I should probably finish this anyway. There are dry drunks on the street, for godssakes
5. Perhaps a cigarette will counteract liver damage?
   
6. No. Mouth cancer!
   
7. Yes.
8. No. Mouth!
   
9. As long as it's a Dunhill. Because they're expensive. Might be some pharmaceutical shit in there.

By this point, any unusual bleeding or bruising will not be noticed. Also, sleep will be foregone, so of course I'll be sleepy. Plus our friends live next door to a restaurant that plays top fortyish dance stuff at eight a.m. Side effects will become reality!

I would like to take an actual medication vacation someday soon. As this blog entry shows, it is getting awfully hard to concentrate...

Okay, you primitive screwheads, listen up.

Tea and I will be going crazy this weekend, as crazy as a couple of restricted-diet losers can go, that is. Crazy equals haircuts and shopping and movies and Italian food and serious discussions about library science. Perhaps we shall see Spiderman 3?

Though I must be honest, I want to see it for only one reason:





Yeah, that would be the obligatory Campbell Cameo.

Yeah, that would be my copy of the book.

Related: Sam Raimi is supposedly a Bushie-contributer conservative. There is a lot of "You mess with insert name/place here, you mess with me/all of us/grandmas" in the Spidey films. At the time of the first film, I read it as post-9/11 sentiments.

Something else I noticed about Mister Raimi's films: they all have six or so working titles. Evil Dead III, the Medevil Dead? Army of Darkness: The Ultimate Experience in Medieval Horror? Spiderman No More? Spiderman 2 Lives? Obviously, all these title changes show a grave amount of flip-floppery in Mister Raimi. I am highly disappointed. HIGHLY. DISAPPOINTED. Heh. Heh heh.

Also related: Ted Raimi appearing immediately out of nowhere when J. Jonah Jameson shouts for him (Spidey 2) still makes me die, lots.

Also related: Tobey McGuire is thirty-freaking-two? When did this happen? Everyone probably tells him, oh, you'll be glad they're still offering you the kiddie price when you get to be my age, and he says, Damn it, I am your age, when is this shit gonna stop?

Pretend on-blog-topic but secretly not and yet be proven: Deadites ate my colon.

"Right next to the dog face boy!"

I had my doctor's appointment. The leg verdict: tendinitis. Hurrah!

In other news:
Medco plays carnival tricks with my prescription prices, and I realize I must be wealthier than I thought.

Yesterday I went to pick up a refill of Colazal, the most immense and (unfortunately) necessary of my medications. I popped in at a busy time and joined the line behind the woman at the counter who possessed a giant red curly bouffant hairstyle. She was staring, dumbfounded, at the checkout clerk.

"But I saw the doctor last week."

The clerk murmured something, her eyes anxious and darting from the woman's face to the red bouffant, as though it might loll off the head and suffocate her.

"Well, I don't know his office hours."

The clerk murmured some more, and this time I caught the word "tomorrow:" that dreaded demoralizer of all scripp hopefuls.

"I can't wait till tomorrow. I CAN'T!" The bouffant wobbled. "What bullshit." She turned to those of us in line and glared Well? Don't stand for this! Join me! Take your business elsewhere, where they will call your doctor at home! She hoisted her purse and stalked off past the analgesics.

The clerk eyed me. "Can I help you?"

"Sure. I need to pick up a prescription for Axxx Xxxxxx, please." I spelled my name.

For some reason, this pharmacy can never find my prescription. It turns up behind the pharmacist's computer, or under the counter, or in a secret dusty bin hidden under the rubber car seat doughnuts. And yet, during the searches, they always ask me the same thing: "Can you spell your name again, please?" Because the spelling, like a talisman, will lure the pills out, or cause them to glow gold, or something.

The clerk put back the dozen bins, wiped the cobwebs off her sleeve and scanned my scripp.

"That's 82.93, please."

"Um. Okay." I did not want to cause an uncomfortable scene like the Bouffant Lady. Also, the line had grown from three to back by the milk and beer coolers. "Is that for a three month supply?"

The clerk checked the labels. "Nope. One month."

Of course it was, I should've known - the bag was smaller than a watermelon. "Ah. Did my insurance cover it?"

The clerk checked the labels again. "Yup. Medco? That's what we have."

"That's it." I paid, confused. If I purchased my pills at the pharmacy instead of their mail-order system, Medco was supposed to pay for about 80%, and my cost per month should've been under ten bucks. I stopped by the front of the store and bought a giant bag of spearmint slices - with real spearmint oil, only ninety-nine cents - to help me mull things over. Then I drove home and hopped on the company's website.

It did not take long to figure out where I had gone wrong.

Medco offers a "price a medication" feature, where you can find your drugs and compare pharmacy prices to mail-order. When you enter in a drug name, the system automatically defaults to the dosage of one pill, once a day. Sure, Colazal would cost me under ten bucks a month, if I just quit taking so damn much of it. I checked all my drugs, and found that, hey, to save cash, all of them will have to come through the mail from now on.

What can I say? I love the cotton candy, the funnel cakes, the house of mirrors. (Or, if you're from where I'm from, a glass of milk - white or chocolate.)

This is clearly a case of the willing sucker. Also, I seem to have an overwhelming fear of being the Entitled Bitch in the store, though the unappetizing display of the Bouffant Lady was clearly only one way to handle a situation. It's hard, though, when you're out of pills and just want to get the fuck out of there, to spend the time asking for a week's or more worth of medication, calling the doctor to get a prescription transfer to Medco, and then waiting, pill-rationing, for the mail-order to come. But it is doable. I wasted money.

At least I had crappy candy to help me deal.