Eugene Fischer

Tag: Crohn’s disease

Some Lovely Words

In 2008, after the second misdiagnosis of the terrible wasting disease that had me bedridden and wretched, I sought the opinion of a colorectal surgeon. He did a cursory (yet still excruciating) examination and pronounced me “severely diseased,” a horrifying phrase to hear while lying on a doctor’s table. He said that when I found a new gastroenterologist we needed to reconsider the possibility that I had Crohn’s disease. Which, of course, I did. I started monoclonal antibody treatment for it in 2009 and began to improve. Crohn’s does flare intermittently, but I’ve responded well to the biological medications, and in the last few years suffered only rarely.

Yesterday I had my first colonoscopy since I was originally diagnosed. It was possible that my doctor would find evidence that my disease was still active–not enough to be symptomatic, but still enough to require more medical intervention. That didn’t happen, though. From looking at my colon and ileum, he couldn’t even tell I had Crohn’s. The words I get to take away from this examination are, “complete remission.” That’s a phrase I like much better.

“Adrift” Now Online

Asimov's Science Fiction (April-May 2010)Eons ago in 2010 I had my first publication in Asimov’s, a near future SF short story about oceanic technology and global politics titled “Adrift.” I wrote the first draft as part of my Clarion application, and revised it through a haze of pain and drugs during the ten post-Clarion months I was bedridden with Crohn’s disease. I sent it out, got rejected, sent it out again, just going through the motions, the vast majority of my attention consumed by the slow struggle back towards health and the contemporaneous crumble of my long term relationship. September of 2009 found me living alone in an apartment, in a body warped beyond recognition by a long course of prednisone, wondering where the last year had gone. So when I heard from Sheila Williams that she wanted to buy this story for Asimov’s, the good news struck me as a sparkle from very far away. It was like being gifted a fragment from the life I’d thought I’d have, the one where I left Clarion with artistic momentum, wrote more stories, applied to graduate school, began to focus on having a writing career.

Now, half a decade later, I feel I’ve finally arrived at where I thought I’d be in 2009. I’m healthy, I’m writing, I have the momentum of an inspiring fiction program behind me. And in April I’ll have a new story in Asimov’s, my novella “The New Mother.” But being here inspired me to look back at where I was, to reread “Adrift.” To my eyes now–eyes that have been trained by years of graduate workshops and teaching fiction students–it is apparent how the circumstances of its creation influenced the writing. I see, in its mannered sentences, a young man struggling through pain and fear to focus on the version of himself that he hopes, in his best moments, he may still get the chance to be. I see the first examples of some themes and concerns that would recur in my writing through grad school. I see things that make me cringe, and things that make me proud of my own strength. I see the intersection of so many circumstances still echoing in my psyche that, to me, reading this story is like traveling through time. And now, five years after it was originally published, I’m offering it again to you.

Read “Adrift” online here.

This Is Crohn’s Disease

Driving home I heard this story by Jack Rodolico on NPR’s Here and Now, and listened in a daze as my own hidden experiences were broadcast over the radio. Like Christina in this story, I too have to inject myself with Humira. I too woke up one day in completely intractable pain that I was embarrassed to discuss. I too was initially misdiagnosed as having ulcerative colitis. I too developed ulcers not just in my large intestine, but in my small intestine as well. Fortunately, my misdiagnosis didn’t lead to an ineffective surgical operation as hers did–I still have my colon. But this is what having Crohn’s disease is like. This is what it does to your life. Listen.

Mistakes Were Made

There I was, having a nice evening in, watching Star Trek: Deep Space Nine, impulsively shaving my beard into a goatee, and thinking it was time to give myself my biweekly injection of monoclonal antibodies. Things went somewhat awry.

I don’t do medical misadventure by half measures.

Finally!

I’ve been waiting for a fourth of a year to be able to take this picture:

My Humira Package

At long last, I have some medication that has a chance of being effective.  As I alluded to in my silliness yesterday, Humira is an injectable antibody for a cytokine called tumor necrosis factor alpha.  TNF-alpha is used by the immune system to mediate inflammation.  As I have inflammatory bowel disease, I am producing far too much of it.  Humira will, hopefully, inhibit this.

As it happens though, I will have to wait a little longer to find out.  After nearly four months of being on broad immunosuppression while I waited and fought for my more targeted medication, I have finally gotten sick.  I have an absurd cold or something that has me feverish and voiceless.  Meanwhile, Humira is a medicine that some people have adverse reactions to, so when I start on it any side effects need to be closely monitored. Unfortunately, one of the common side effects of starting on Humira is…wait for it…cold-like symptoms.  So until I’m over whatever I have, it will be impossible to isolate my health variables sufficiently to safely start my new course of treatment.

But hell, I’ve only been waiting to start this treatment for all of 2009.  What’s another week at the outside?  At least I have my drugs now.

Know Your Foe: TNF-alpha

The following is a classified communique, smuggled across the blood/brain barrier from counter-insurgency leaders in the cortex.

—————

*URGENT MESSAGE FOR PARTISANS OF THE DEFENDERS OF THE DIGESTIVE TISSUES*

It’s been a long battle.  No one knows better than we do how entrenched and seemingly unstoppable are the rogue forces within the immune system that persist in waging their psychotic war against the innocent cells of the alimentary canal.  And no one knows better than we do the sacrifices our allies have made in the ongoing effort to protect and preserve the digestive tract for future generations.  Up until now, our only weapon against the autoimmune offensive has been the cortisol flood.  Our adrenal compatriots have been valiant in this matter, but we all knew it was never more than a stopgap measure.  Overproduction of corticosteroids takes too much of a toll on us all to be a long term solution.

But soon we will have a new weapon.  Our enemy’s weak point has been identified, and we are poised to attack.

tnfa_crystal_structureThis is our target: tumor necrosis factor alpha.  This cytokine has been identified as the molecule the enemy is using to regulate its illegal inflammatory actions.  Without TNF-alpha, the insurgents will be unable to continue clear-cutting our villi and ulcerating our viscera.  Their hidden macrophages will be rendered impotent, their detestable engines of apoptosis will grind to a halt.  We have the intelligence we need to end this war.  And, soon, we will have the means to act on it.  But we can’t do it alone; to strike this blow, we will need to accept help from an unusual source.

Your tireless counter-insurgency leaders have for some time now been in communication with extra-corpus agents.  We are aware that the idea of opening our borders to mercenary elements may be unsettling to some, but the reality of our situation is that such an alliance is our only path to victory.  The negotiations have been long and difficult, but, thanks to these efforts, we will be able to mount a new counter-offensive within one diurnal cycle.

humira-moleculeThe operation, code named “Project Humira,” will involve the introduction of an extra-corpus produced molecule called adalimumab.  It is an antibody designed to target TNF-alpha directly.  We currently lack the means to manufacture this antibody ourselves, but we have negotiated what we believe will be a steady supply, to be introduced into the circulatory system from without.  It is our belief that, with this antibody at our disposal, we can downregulate the insurgents’ inflammatory activity and finally end their destructive madness.  The unique and irreplaceable tissues of the digestive tract will be preserved for the appreciation and benefit our daughter cells and their daughter cells after them, down through the generations.  We will know homeostasis in our time.  Victory will soon be ours.

—————

Not for distribution within active inflammation zones.  Denature after transcription.

Sick and Tired and…Happy?

Yesterday I had a tickle in my throat that metamorphosed in the night into something more akin to a forest fire.  And I’m on day 2 of a weird, intermittent nose bleed.  And as I mentioned a little while back, I’ve lately been suffering from an increase in the severity of my Crohn’s symptoms.  But for all that, I’m feeling pretty happy today, for the following reasons, listed in ascending order of importance:

  1. Magic robe.
  2. I had an appointment with my gastroenterologist on Monday, and he decided that the backwards progression of my symptoms called for several aggressive steps to be taken on my behalf, including giving me stronger pain meds.  So now I have a magic robe and a big bottle of hydrocodone.  Even at this level of pain, hydrocodone seems to be strong enough to keep Zelazny’s Toothache at bay.
  3. If you have clicked over to the “Writing” tab since last night, you will have noticed that there is now a firm publication date for the story of mine that Strange Horizons is publishing.  I’m going through the galley now.
  4. I’ve spent the last three months on prednisone (which I was only supposed to be on for a matter of weeks) due to a protracted and ridiculous battle with my insurance company.  As of this morning, that battle is over.  I am finally going to be allowed to start on one of the class of medications my doctor first prescribed for me back in January.  If things go as planned, I will finally have a gleaming syringe full of specially tailored monoclonal antibodies delivered to me on Friday.

I’ve been putting off writing up a long, detailed account of The Harrowing Tale of E. J. and the Crohn’s until the insurance issues were resolved one way or another.  If I actually get my meds on Friday, that will give the narrative enough closure for me to be willing to commit it to text.  I expect it will be somewhat cathartic to write, though I can make no promises that it will be particularly pleasant to read.  And I might wait a little while to post it, as I’m not convinced that thousands of words about misery and blood and pain are what I want on the front page of this site when my first published story goes live.  But if my discussion of my health issues up to this point has, to borrow a phrase from Neal Stephenson, sounded like the terse mutterings of a pilot at the controls of a damaged plane, know that that has been more or less by design.  For the last 2/3 of a year, my life has been awfully one-note; limiting the degree to which I let it dominate my conversation has been an intentional coping strategy to force me to pay attention to more positive things.

Medicating, Sleeping, and Writing

Crohn’s patients, I have come to learn, frequently experience what are known as “flare ups”:  sudden spikes in the severity of their symptoms, often requiring agressive medicinal intervention to combat.  I had a flare up yesterday, and it had me–during my more lucid moments–reflecting again that “flare up” is a far less evocative phrase for the experience than I think it deserves.  I would prefer something like “perpetual stomach stomp,” or, perhaps, “gutsplosion.”  (How great a world would this be if students across the nation had to do PubMed database searches for gutsplosion references to write their papers?)

Anyway.  I spent nearly all of yesterday in a drug induced stupor, sleeping when I could and downing pain meds and reading when I couldn’t.  After about 20 hours of this things began to improve slightly, and I decided to get out my computer and see if it would be possible to get any work done.  Despite the end of the month deadline, working on the story I’m writing for the Genomics Forum competition, for which I am still figuring out the characters, seemed too hard.  So I opened up the file for another story I’ve been arduously revising for the past month.

Words started falling out of me like grains from a split sack of rice.

I have no explanation for this.  Up until yesterday, revising this story had been like pulling teeth.  But last night I could suddenly see through the haze of the story as I had written it once clearly through to the end of the story as it should be written.  I think I will be able to finish the revision today.

No deep thoughts here.  Other than perhaps that it is surprising how far ending on a bright note can go toward changing one’s perceptions of a miserable experience.

Fighting Central Obesity with Lose It

Check out the “signs and symptoms ” section of the Wikipedia article on Cushing’s syndrome.  I am experiencing most of these; not because I actually have Cushing’s, but because I have Crohn’s disease, which is currently being treated with prednisone, which ups my cortisol levels–functionally giving me an artificial case of Cushing’s.  One of the symptoms on that list is central body obesity: weight gain that affects the trunk and head but not the limbs.  After I started on prednisone I very quickly gained 30 lbs. and was suddenly at risk of needing to buy a whole new closet full of clothes.  That, plus the acne, plus the moon face, meant that I had traded chronic pain for a host of body image issues.  I think, on net, that’s a good trade, but still is less than ideal.  So, despite my doctor rolling his eyes and saying, “On prednisone? Good luck with that,” I decided to try going on a weight loss regimen with the hopes of at least stabilizing my weight before all of my pants stopped fitting.  Since the symptoms from my Crohn’s are still at a level that makes exercise difficult, I chose to focus on dietary weight control.  To that end I downloaded an app for my iPhone called Lose It to help me track my calorie intake.

That was a little over four weeks ago.  I’ve lost 9.5 lbs.

Lose It is more than just a calorie tracker.  It calculates your resting metabolic rate and assigns you a daily calorie budget to meet your weight loss goal.  Every day you put in the food you eat and, if you so desire, the exercise you undertake, and it keeps statistics about your budget management on a daily and weekly basis.  What makes it really effective is that its interface for tracking diet is connected to an online food database that makes it largely unnecessary to know the caloric content of what you are eating beforehand; you can find the the meal you just ate, or a reasonable approximation thereof, from within the program itself.  The database has specific meals from many national restaurant chains, most national grocery brands, and any individual ingredient you are likely to use.  You can input custom recipes and foodstuffs, and the app remembers them so you need only select it the next time.  I’m not an eater of staggering variety, so after a month of using Lose It I very rarely have to search for foods anymore; most of what I eat is there to be selected from my list of previous meals.  I’m also not a person of great willpower, but the subtle feedback of my green calorie bar turning red when I go over-budget for day seems to be enough to keep me in line.  I’m averaging about one over-budget day a week, making me consistently under-budget on a week-by-week basis.  And, as I mentioned, it’s working.  I’m losing weight.

Lose It (iTunes App Store link) is a great.  It even has nutrition tracking functions, which I haven’t used because I’m more interested in vanity than health, but I’m sure they’re excellent.  It’s a free download, so if you are an iPhone user there’s no reason not to check it out.

Zelazny’s Toothache

In Roger Zelazny’s Hugo award winning story “Home is the Hangman” there is a line that, in one sentence, captures what has been the primary theme of my life for the last seven months as I have been scrabbling my way out of the pit of Crohn’s disease.  “Even the most heartening of philosophical vistas is no match for, say, a toothache, if it happens to be your own.”

I don’t know if everyone’s brain works this way; I can imagine raging against discomforting and unavoidable distractions of the senses in a way that drives productivity rather than retarding it.  But that isn’t what happens for me.  I am subject to Zelazny’s Toothache.  Today the weather in San Antonio could not be more pleasant, and I awoke with an energy and eagerness for my various writing projects that usually prefigures a satisfyingly productive day, one of the days where, instead of fighting for every word, the top of my head will unfold like the fronds of an anemone and easily pluck images from the currents of my fictional world.  But then, with no warning (and there is never any warning, or any observable pattern), I feel the fist begin to tighten deep in my abdomen and the tendrils of productivity slam back inside my skull.  My entire focus shifts to my physical being, and I head home and crawl into bed and take pills and seek out escapism and do anything else to further the one truly important goal:  finding a vector of comfort to cling to.

But if I can’t force my focus onto the areas in which I want to be productive, I can at least experiment with being productive about the things on which I’m focused.  Which is the point of this particular post.  Just keeping my fingers moving on the keyboard as I wait for the storm to pass.

I suspect I will be writing more about Crohn’s in the future–hopefully with a far more retrospective slant.  For now, here’s a link to a comic about Crohn’s disease that Tom Humberstone did for 24-hour Comic Day in 2007.  His experience is different in some ways to mine, but page 19 is dead-on.