hitting the wall

After 4 months of adapting to the invigorating and infuriating perks of Prednisone Mania (P.M.), my first weeks without Prednisone are proving to be severely fatigued, and I'm losing my hair in thick handfuls each day.   I did alright through the taper; mild vertigo and a joint ache here and there, but generally well progressed.  Now that I'm completely off, I've hit a wall.  I've slept in until 930-10am over weekends and struggled more than I ever have to get up in the morning for work by 7am.  Today, I finally gave in and called in sick to work in favor of sleeping in until 11am.  If it seems to you that I shouldn't be worrying about needing this kind of rest, know that I worked heroic 8-12 hr shifts last year that ran anywhere from 4am to 10pm, averaging 6am clock-ins.  So I'm disgruntled with this interruption to my upbeat morning lifestyle.  I'm also back to being too nauseous in the mornings to eat breakfast.

Fatigue is a common symptom of Prednisone withdrawal, as is hair loss (Murphy et al 2009; Miozzari & Ambuhl 2004).  So I guess I'll deal. 

On the bright side, I saw a dietitian today.  Unfortunately, dietitians/nutritionists within hospital systems tend to be... less knowledgeable than those of us who come in with specific questions might hope.  I mentioned my concerns for balancing

1) soy products (as I don't eat dairy and need my fermented foods, but have been warned about over-consumption of soy and inflammation),

2) grains (high residue, high carb, my interest in leaning toward vegetables to substitute most grains/breads, etc.), and

3) sugars (even when I was diagnosed twelve years ago, one of the first things I was told was that I ate a lot of processed/complex sugars which probably exacerbated my gastrointestinal sensitivity among other things, and to stay away)

Her response to my inquiry regarding all of these things was, "oh I wouldn't worry about that."  I kid you not.  I attempted to coax a more detailed explanation out of her, as I was eager for her opinion of what I had gleaned from my own research.  Nada.  She did not even allude to the Elimination, SC/Paleolithic, Mediterranean or any IBS-friendly diet.  I'm so glad that by some glitch in the system there was no copay for this appointment.  I understand that most nutritionists see patients who are new to approaching their medical care through a dietary component, and that many people just need to be told not to consume more than 200 daily grams of fat or drink more water or that they're allergic to some foods.  It's not her fault she couldnt tell me exactly what I wanted to hear.  It is her fault that she was totally unaware of how to answer any of the questions I asked -- I posed them to be specifically familiar to people in the nutrition profession (I have a friend who in nutrition whose first reaction to hearing the summary of the last four months was to ask if I had tried the Elimination diet and what it told me if anything).  Clearly, if I want a more straight-forward conglomeration of all the research I've been doing, I need to see a naturopathic nutritionist, or someone straight out of college who still knows how important it is to understand how nutrition and disease interact.

On the actual bright side, I made apple/fennel/butternut squash soup with supper tonight.  Pureed veggies are my saving grace.  H.B. liked it!  Yayer!

Chanukah Miracles

This year marks H.B.'s and my first holiday season together (get all the cooing out of your system now).  Chanukah is not a high holiday, and were I a good Jew, I would not be so excited about it.  However, I am a semi-Semite, a historical Jew, and I look forward to the opportunity to celebrate an event in geopolitical history.

Roughly 2300 years ago, the Graecian Alexander the Great conquered Judea.  At the end of his reign, his kingdom split into the tension-riddled Seleucid and Ptolemaic kingdoms, between which Judea was caught.  While the two Greek factions fought for political control, the Jews successfully turned Jerusalem into a recognized city while maintaining their Temple and practices in exchange for paying extraordinary taxes.  For a hundred years, taxes paid for peace until Seleucid King Antiochus entered the stage and attacked the Ptolemies.  Antiochus lost and was presumed dead, which invited his crown to be lobbied for, and a former High Priest began this revolution in Jerusalem.  Furious, Antiochus carried out a slaughter of Jewish people, declared martial law and decreed many Jewish practices capital crimes.  Desecration of the Temple ensued.  Judah Hasmonean and his followers revolted and successfully overwhelmed two of Antiochus' armies via guerilla warfare.

A year after the defeat, the chanukah of the rebuilt Temple -- chanukah being the Hebrew word for "dedication" -- was declared by Judah to last for eight days as a reminder of Sukkot, which also lasts eight days.  But things were not all sunshine and happiness in Judea; civil war lasted for twenty years following the defeat of the Seleucids until the Hasmoneans won and regained governing power.  And although there was warring in Judea, the Seleucid Empire was collapsing under the budding Roman and Parthian Empires who joined forces with the newly recognized state of Israel... and then exploited and retracted its independence as Octavian sought to out-do Caesar's expansion of the Roman Empire. 

Although the Hasmonean family governed for nearly a century, there was severe tension between them and the sages.  The myth goes that when the Talmud was finally written seven hundred years later, the story of the single day's worth of oil burning for eight days was the result of the sages not wishing to credit the Hasmonean family, and Chaunkah was regarded in somewhat of a tainted light. (The Book of Jewish Knowledge: 613 Basic Facts About Judaism).

But enough history -- onward to this year's Chanukah miracles!

1.  I am officially off Prednisone and am beginning to shed (very, very slowly) its various layers.

2.  A week after being denied by the two urologists in Oregon who my insurance covers, the symptoms of my mysterious infection-which-was-not-actually-an-infection-of-any-kind attenuated and are now almost non-existent.

3.  I have only woken up one or two times a night for the past several nights now.

4.  H.B. and I did some serious cooking on Night 1, which yielded almost zero Crohn's pain.

 

5.  My parents gave us a menorah which dwarfs my baby one from college in size and effulgence.

6.  We decided, this being the season for giving, and since our first anniversary is probably going to be amalgamated with my birthday and New Years, to each give four small presents to the other.  The miracle, here, is that we can both afford to give a few nice things not only to each other but to family.  Sorry, friends; a heartfelt letter of undying love must suffice.

7.  This has been a particularly challenging year for too many of the people I treasure.  Career stifling unemployment, seemingly insurmountable isolation, health obstacles without healthcare and the deaths of loved ones have played all too frequent and dominating parts in the lives of those who have met them with courage, passion and optimism.  One thing just seems to rear its ugly head right on the tail of another.  This year continues to be a very fortunate one for me, which has allowed me to continue to support the people I care about in whatever capacity is appropriate.  I am thankful to have not lost any of the people I hold most tightly.  My having not been touched by misfortune this year, and instead being flooded with opportunity and overwhelming happiness, is not really a Chanukah miracle so much as the universe being somehow content with my behavior... but I'll acknowledge it on Chanukah, anyway.

8.  The Eighth Miracle of my 2009 Chanukah is Aaron Zelinsky, and his article in the Huffington Post comparing Judah the Macabee to Barack Obama.  Yayer.

Chanukah sameach!

Remicade Round IV

Why Round IV was grand:

1.  They started me on a fancy new protocol last night for the super cool patients who have gone three infusions with no "problems".  Instead of coming in every 15 minutes to increase my rate, they're starting me off at full throttle and letting me run the 2.5 hours.  Apparently, this makes almost no difference to me in terms of time consumption, but saves the nurses the hassle of coming into my room every 15 minutes.  I am an awesome patient.

2.  No Benadryl or Tylenol.  This is also the first time I've appeared for my appointment without being high on painkillers or in raging pain.  Awesome.  Next time I'll be able to drive myself and spare H.B. the wasted four hours of his life (which he insists he does not consider as such, but who wants to spend Saturday evening sitting in a hospital bed entertaining their girlfriend?).

3.  Seinfeld was on for a bit.

4.  There was leftover stuffing for supper when we got home.

this impotence will not stand, man

I don't think it's that doctors are lacking in diagnostic intelligence, I think it's that they're lacking in communication skills.  No doubt they have reasons for taking certain steps before others (i.e. putting me on an elimination series of antibiotics and requesting five negative urinalyses and letting me rot for over two weeks before sending me to a urologist).  They are, however, TERRIBLE at explaining why.  Why they are unconcerned about the nervous spasms accompanying my loss of bladder control.  Why they have not gotten culture results back to me after five days.  Why they are not recommending me to a urologist after antibiotics, AZO and various other over-the-counter UTI treatments have done nothing (or exacerbated the symptoms).

Thanks to Moon Face, I was inspired to do some more research into interstitial cystitis, about which I asked the Dr during both my urgent care visits, and which they both brushed off like it was an impossibility (which I allowed because I was all but delirious on both occasions).  What they should have told me was that it was important to rule out infection because interstitial cystitis has so few direct markers that elimination of UTI by urinalysis and antibiotic regimens is part of diagnosing IC.  They also should have told me that if symptoms persisted despite the antibiotics, to tell them so that they could refer me to a urologist.  Additionally, they should have told me that since the first portion of my cultures were also negative, it suggests that -- in agreement with my urinalyses and lack of antibiotic response --  I may actually not have an infection of any kind after all.  Doctors, I have noticed, depending on their specialty, have very limited next-step projection skills.

There is a great deal of overlap between occurrence of IC and IBS which gives me hope that my GI will bring IC up as a possibility when he responds to my questions on Monday.  However, being a GI he may decide to attribute what's been going on entirely to Remicade or PPR (because that is what I suggested to his nurse last week).

The short time that this has been going on (two+ weeks) relative to the typical time span that it takes IC to be correctly diagnosed (weeks to months) suggests that this still may be neither infection nor IC, but I would appreciate medical input from any of the three Drs who are now involved in this diagnosis.  Really, any communication would be helpful, guys.  Responding to last Monday's calls would be a super start (yes, I have taken into account that Drs deserve a Thanksgiving break, too).

Epic Thanksgiving, 2009

Perfect.

I could not have asked for a more wonderful day.  Finally fell asleep around midnight, and then sporadically woke up a few times because Doxy seems to prefer to work -- or give the illusion of working -- during daylight hours only.  Felt relief around 7am and laid in bed until 9 soaking up the comfort.

Having baked two different pumpkin pies last night between H.B. and myself, and an experimental cranberry tart bar dessert, there was no work to be done today before heading over to my family's house around 3pm.  So we were lazy.  And I did some Chanukkah/Christmas/Birthday gift brainstorming.  Serious business.

Upon arriving at The House, there was the soup course followed by one of the most enjoyable board game conventions of my family's history.  The main meal followed, and was the single most rewarding meal of my life; turkey, my dad made me special stuffing without celery or sausage, cranberry sauce and mom's magical yam stuffed oranges (I could not indulge in the asparagus dish).  Ordinarily, I look forward to these dishes all year and stuff myself to beyond limits knowing full well that I will finish the evening with a Crohn's attack (and I usually do).

This year, I trained for a week beforehand expecting that my current flare would ruin my favorite holiday (above Rosh Hashana only because of the stuffing!).  I came armed with on-the-spot interventional drugs of all varieties.  I purposefully encouraged gaming between soup and main meal, and music/pool between main meal and dessert so as to allow maximal space to be made and used.

It worked.  No Crohn's pain.  Even during years when I'm doing well in general, Thanksgiving never fails to assert its domination over my intestines via pwning my self-restraint.  My first Thanksgiving on record with no Crohn's pain.

My mother arranged a three part harmony of Mood Indigo and some other songs, and convinced my brother to compliment her unparalleled jazz piano on his acoustic.  There were at least three hours of singing and playing between dinner and finally breaking out the Four Desserts, over which time my voice warbled out of its comfortable hibernation and finally relaxed into familiar bossa nova and even operatic ambitions.  This was the first H.B. has heard me sing.

Unfortunately, as the music-making ensued, Doxycycline turned in its time card for the day; the dreaded and presently unidentified nervous spasms began to resurface.  I made it through the music session and dessert, but was forced to take H.B. and some leftovers and leave thereafter.  So unfortunate; the gaming and music-making could have gone on all night.

The bitter end has had not the slightest taint on today's sweetness, however.  I am totally satisfied -- enamored, even -- and looking so fervently forward to the next family gathering that it is a good thing I can't sleep, because I have no interest in doing so :)

I adore my mother's squash soup.

 

And the wine that I could not drink.

 

... And the wine that I could not drink...  

The turkey.

I love my mother's hands on the piano.

 

And I love my siblings.

beam of sunlight

I fell asleep at 830pm last night.  There was no aggitated squirming, and no hot pad.  Between 830pm and 545am, I was only woken up three times.  Three.  In 9 hours.  Hoorah for Doxycycline.  This is cause for a tremendous celebration.  I think I will demand that it involve a turkey and lots of squash dishes.

I did wake up with a throbbing left leg this morning, because, well, if it's not one thing...  However, gone by the time I made it to work this morning, it proved to be harmless.

I have been training this week for Thanksgiving.  That's right, triathalon style training.  I ate dried cranberries on Sunday and cooked salmon and zuchini on Monday, more dried cranberries and garlic bread on Tuesday.  Although the garlic bread brought a bit of upset, I am otherwise six days Crohn's pain free.

Take a minute to absorb that one.  Like sunlight.

Bring on the turkey.

sick day 4: the final report (because i had better be well enough to go to work tomorrow)

The urgent care venture was interesting.  Mostly because the mystery was somewhat resolved in only a matter of... four hours (shock and awe!).

Apparently, I don't respond to Cipro even though I've never taken any other fluoroquinolone antibiotics and could hardly have developed a resistance.  So I've upgraded to Doxycycline, of the tetracycline family, with which my body is very familiar.  Additionally, I was asked to take not one, but two more HCG tests along with a CBC and a tissue culture.  The woman I saw today told me that my original HCG on Wednesday was positive, not negative as I was told by my goddess PCP.  Today's both came out definitively negative.  So, as you might imagine, I'm perplexed.  If my HCG were in fact originally positive and today's is in fact negative, it is implied that the Cipro did its job and the infection is obliterated.  However, the symptoms having gotten worse instead of better does not jive with this conclusion.  Therefore, as we press forward with bigger and better antibiotics, I am skeptical as to their capacity for success.

However, with the combination of Azo and Doxycycline I am feeling slightly better already.  Nausea and headaches subsiding.  Perhaps I really had a bad reaction to Cipro... dizziness, headache, loss of appetite, nausea and weakness of limbs are all adverse effects of fluoroquinolones.

sick day 3: sit rep

I can't really tell if the nausea is due to revitalized pre-flare Crohn's, or from the absurd amount of drugs I'm taking for all the other symptoms that have suddenly arisen.  The pharmacists assure me that they check my file every time they prescribe me something new to make sure nothing clashes, but they are just as full of BS as anyone else, I find.  Just because the cross-referencing of two (or thirteen) drugs doesn't pop up a glaringly flashy warning sign does not mean they are safe to take together.  Did the pharmacist count the number of prescriptions I'm on that are 1-3x daily?  Probably not.  So I really have no idea what's going on, except that I feel like a zombie.  A very nauseated zombie who hasn't slept in 2 days.

Since I last posted (at 230am yesterday), I have slept about four hours, which is to say that I have slept roughly four hours of the last 48.  This would be totally tolerable except that I'm ill.  And since I know that lack of sleep is working against me in terms of healing whatever is wrong, I am particularly irritated about it.  I have accomplished, however, an excessive amount of movie-watching.  My heating pad has contributed more to the electricity bill over the past three days than during any other time during this current Crohn's flare (also impressive... I'm very impressed with the artifacts of this medical enigma in general, it seems).

Good news:  In the eb and flo of nausea, aching and other effects of what we will temporarily call "kidney infection" (even though that is clearly not what is going on), it escaped my attention that I have not had Crohn's pain for nearly five days.  Unheard of -- absurd!  And very, very encouraging.

As for the inauguration of Sick Day 4, I am off to urgent care shortly.

sick day 2; sit rep

I should, perhaps, not make documentations during the wee hours (no pun this time) when I am particularly irritated by the fact that I am not sleeping.

I jinxed myself, it appears, by bragging that I slept an almost healthy cycle last night.  The Gods of Pharmacy are having their sweet revenge (they are easily embittered).  Let it be known that throbbing is not always classified as "pain", and is therefore not always defeated by painkiller, a lesson that I am learning through practice at 2:30am.  Let it also be known that it is, in fact, possible for throbbing irritation to override the sedative effects of oxycodone -- a particularly impressive demonstration.  I am now semi-convinced that my negative urinalysis may not have been a screw-up, and I may be taking extra antibiotics for no reason.

Second unexpected report: Boost sent me to dust off the promethazine bottle after several weeks of successfully fended-off nausea.  Perhaps sugar was the culprit.  I also learned that although I typically do not react poorly to cooked carrots, dried carrot chips do initiate an allergic reaction.  Toast has once again won-out in allure, today.  And an egg.  

On the other hand, I'm plenty awake enough to do some reading without falling asleep five pages in (as has been my habit the last several days/weeks).

On that same, auspicious hand, I finished a draft of the textbook chapter today, which reminds me: my boss and coworkers are incredible, very few are so lucky.  I am plenty happy with it; the weekend will be for fine tuning and healing only.

Finally, the very same proverbial hand seems to have facilitated -- after painfully ridiculous and prolonged chasing down of various graduate admissions personnel --  the confirmed reception of all of my letters of recommendation!  You'd think a graduate school that promotes online applications but also accepts/requires portions in hard copy would have an efficient system of making sure the combined records eventually met in the same system.  Apparently, this is not a safe assumption.  Those universities which offer stubborn old-school professors the option of snail-mailing letters of recommendation do not necessarily have a system of marking that record in the online system (which, for the last few weeks, has listed my application as "unfinished" because admissions had not entered that particular letter of recommendation into the system).  All four of my schools are guilty of this, by the way.

sick day 1; sit rep

After my 3-6am outburst of energy yesterday, during which I worked on some graphs even though I said I wouldn't, I slept on and off for the entire rest of the day.  In 1-3 hr increments.  And got through nine pages of reading and Shrek the Third in between.

Slumber was interrupted only about four times last night -- only twice in cold sweats (score!) -- for bladder relief, which suggests that at least the antibiotics are helping even though my urinalysis was negative (?!).  The kidney infection debate is still open; however, I am considering it ridiculous and am ascribing the symptoms to the flu and its collision with my Crohn's treatment battery.  Nevertheless, my PCP (who, for the record, is a goddess and I almost asked her if she'd mind branching out and treating my Crohn's disease) requests another urinalysis when I'm done with the antibiotics.  I have no interest in resisting her.

Toast has never been so... ... much more appealing than any other food, including chicken soup.

if it's not one thing, it's at least three or four others

Right, then.  I am staying home from work today (gasp!), and tomorrow (come again?).

That's right, Mama's got the pig bug (which is to say I'm being treated for H1N1 although CDC reg's now restrict the conformational test to inpatients)... and a possible kidney infection.  1)  Good thing the VA did not get their next shipment of vaccine in last week when I was scheduled to get mine with the other high risk employees with chronic illness; the government is handling this distribution so well... 2) Funny thing how every single one of my symptoms is also a potential side effect of Remicade and/or Prednisone withdrawal.

Admittedly, I'm not entirely upset about this whole "stay at home sick" thing.  What better opportunity to get some actual rest (she says, ignoring the blazing 3:49am that reads in the far corner of the monitor)?  I don't think it's my fault that I'm 100% awake and alert right now -- I blame the triumphantly rebounding P.M. and my hyperactive bladder.

In all seriousness, I plan to spend today reading my book and allowing myself to pass out whenever my bladder will allow.  Cue Adagio e piano sempre.  I'll write the damn textbook chapter tomorrow.

I am pretty miffed, however, that I have to postpone my Remicade appointment which I just successfully rescheduled for this weekend so I could get that extra boost before Thanksgiving.  Never fear: I will be eating stuffing; end of discussion.

In other news: ANDY CAME! Two whole nights of food, friend and board games galore*.  When Andy visits, good food is created.  For your viewing pleasure, the progression of Ginger Chicken with Beets and Mushrooms...

 Butt Mushroom.

 Butt Mushroom on Legs.

 

*Andy had the pig bug back in April, so we're in the clear.

Food of the Day: Turnip

Last night, I made modified garlic mashed potatoes.  With turnips.  [Picture to follow]

I like turnips as mashed potato substitutes because when pureed with a little garlic, they retain enough of their own flavor after boiling (or roasting) that it isn't necessary to add any butter (yay!).

Turnips are nutritionally very similar to beets: high folic acid, vitamin C and soluble fiber content.

I may have to break out the dehydrator and make some beet and turnip chips soon...

application submitter's remorse, and other stories

Having officially applied to graduate school, I have slipped naturally into that realm of pessimism that often accompanies the "finalization" of any piece of work.  As of the moment my last application slid begrudginly into the priority bin at the post office, my stomach has been doing proverbial acrobatics (as opposed to Crohn's acrobatics... which are equally demanding of attention, but far less entertaining). 

Don't get me wrong, I'm thrilled that the preparation is over until interviews.  I celebrated with roasted carrots and mushrooms (notice how my reward system revolves almost entirely around "forbidden" foods), and spending my paycheck on boardgames (!!!) (I said almost entirely). 

I'm just simultaneously mortified that I wont even make the interview cut.  I have this lingering fear that my GRE scores will somehow emerge as the primary deciding factor in my academic fate and the admissions committee will not even get to reading my epic statement of purpose before discarding me.  For this fear, I blame The Compulsion, and having declared so, henceforth dissolve the concern as it is [hopefully] not grounded in reality.

In other news, I've woken up with throbbing knees and brains the past two mornings -- a symptom of Prednisone withdrawal that I have never experienced in all my steroid dabblings.  I informed my doctor that I would be holding my taper at 20mg for another week and then decreasing my weaning to 5 mg increments.  Sad face; I've always been fairly stable tapering by 10mg at a time.  This is a sign of old age, yes?  Incidentally, I would love for someone to conduct a longitudinal study of aging in Crohnies; I have this feeling we look more like a saturation curve (the sickos, at least) beside our age- and treatment-matched slow exponential controls.  Maybe CCFA will fund that one... 

Another side effect of tapering the Prednisone is that P.M. is wearing off.  Either that, or my body is just too tired to pay attention to it anymore.  Point being, I'm exhausted.  Consequently, work days are elongating.  I totally and completely do not mind this...  in fact, I look forward to spending  more time in the lab during the winter season... I'm not sure why, but this has proven to be its own independent pattern.

For the record; I am entirely, unequivocally and unexplainably happy.

Preface, Part II

For the record:

1.  I am totally, profoundly and undeservedly happy.

2.  This blog is an unapologetic record of both research, and personal progression.

the "no more pain until this remicade shit kicks in" diet

No matter how much research I do, my mother will always be smarter than me.

She will always be better at taking care of me when I'm sick than I am.  H.B. is new at all this, but someday he will be better at it than I am, too.  Mom is close enough to it to know the personal urgency, and far enough removed from it to consider what I have moved on from and forgotten is important.

The Short Term, for instance.  I've been so enthused about finding new ways to make vegetables more benign that I've forgotten that if I'm still having pain, they're probably not a good idea at all, even cooked and pureed.  In the long term, the SCD-esque diet will probably be quite helpful in maintaining whatever level of pain-free I can achieve with the Remicade.  But I have not gotten there yet -- clearly.  In the short term, I have to allow myself to eat grains and starches: although they're probably feeding whatever gut flora are overgrown and causing problems, they remain the only food stuff that (unless consumed in large quantities) goes down with little to no pain.  At this point in time, the goal is to avoid  pain.  Balancing diet to maintain that state has to come later.  Horse before the cart, etc.

I've always had trouble with fresh fruits and vegetables; whether it's Oral Allergy Syndrome or Crohn's, it's an inflammatory reaction, which, if it's happening in my mouth and esophagus is probably also happening in my intestine.  Since I don't have a spy down there, and my doctors seem to think my scans are "clean", I can't know for sure, but I would postulate that since my left large intestine and mid-lower small bowel throw temper tantrums whenever meals reach them, there has to be either a bigger stricture problem than Dr. P and Dr. S could see, or an inflammatory reaction to the food itself.  Deductive reasoning says one of these things must be occurring.  Good thing I have an amazing doctor to help me figure out which so I can make it go away faster... oh, wait...

My mom and dad are also the only people other than myself who have been doing this as long as I have.  Granted, they haven't lived with me for some time, but they remain my health care consultants and medical advocates in times of need (which lately is fairly often, especially if I'm in drug-delusion mode).  They remember details from the Original flares from over a decade ago... I'll be damned if I can remember flares that accurately from when I was that young.  Pain has a unique way of making my brain cease to function.  I also have a sneaking suspicion that details stick in your mind better when you're trying to keep your child from suffering.

Veggies are too new yet -- even cooked -- to strain in my belly, it seems.  Given the ridiculous flares of the past three days, it was too soon to kick out so many carbohydrates from my diet; I need them to cushion whatever else I'm putting in (which at the moment is some variation of Boost, applesauce and sushi -- yeah, small quantities of raw fish are also harmless, go figure).  So, in my mother's honor, I'm admitting defeat and stepping back to the "no pain until this Remicade shit kicks in" diet.

why driving during a Crohn's attack is not a great idea

As soon as I stepped onto the bus this evening after an awesome sushi date with my ex-post-doc, last night's record mysteriously began to play itself again.  Only this time, it was dark and rainy and I was twenty minutes further from home.  Can you feel the suspense building already?
Well I must disappoint you, here; the pain was not quite so spine-stiffening as last night.  In fact, I read a full eight pages of my book, and absorbed roughly three (compare to last night's 2:0).  Once again, I requested H.B.'s assistance in preparing my hot pad, and as I stepped into my car I realized that I was about to embark on a unique four-minute journey.  It is a bad idea to drive during a Crohn's attack because when applying the brakes and/or turning the vehicle, you make more use your lower stomach muscles than you probably realize.  I've never induced a muscle cramp in my stomach from driving before, but one of the turns I made tonight mid-pain-wave was made tight enough by the rainy road.  I subsequently sat up straight to try to relieve it and, in so doing, released the spasms of my left large intestine and lower middle small bowel.  So I hunched over again.  This back-and-forth continued until I got home, had to park at the other end of the complex (on the solitary night that I would have preferred not to be caught in the rain), and had to shuffle-sprint (this must have been utterly hilarious to behold) an eighth-mile to my dominion.

Do not drive during a Crohn's attack.  It will give you muscle spasms.

What I forgot to mention yesterday was the resurfacing of heartburn.  It emerged a month ago when I began reintroducing solid/mush foods.  That was completely understandable as my esophageal sphincter was likely reacting to the transition from pure liquid to slightly solid -- an increase in pressure, provoking reflux.  This time, however, there is no new food.  I ate cauliflower soup, egg, chicken and rice yesterday.  I ate a bagel and a bit of sushi today.  There is no excuse for heartburn, yet here it is.  It is noteworthy that in eleven years of Crohn's disease I have only ever had heartburn when reintroducing solid food following a liquid diet stint.  Another new (or at least newly placed) symptom!  Hoorah!

Once again, I am thoroughly enjoying watching Mythbusters and tea whilst high (on oxycodone).

on waiting it out

No sooner had I convinced my poor parents that waiting it out was the best plan of action than I had another major attack.

I have had a somewhat intense past two days at work, but I don't presume that to be the cause.  I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset.  Leftover cauliflower soup, tuna/crab sushi, egg, toast.  These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower.  I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...

This was a fairly sudden attack, as they go.  I was fine the whole day until a few minutes before I stepped onto the bus home.  I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end).  I think I turned two pages for the sake of appearance, and read none.  This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each.  The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen. 

So I did it: I road the bus all the way home in peak rush hour traffic with an attack.  I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door.  He also served me a bit of prune juice with some oxycodone (my first dose in three weeks).  I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.

The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode.  The reason is this: I want to know what Remicade's potential is for me.  I want to get off the prednisone and see what Remicade can do for me without the aide of steroids.  I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself).  After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve."  These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action).  If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.

With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight.  I'll be alright.

the reluctant forfeiting of my faith in medical appraisal

Alright, I'm done.  I will keep weaning off the prednisone, as laid out in the original "plan"; I will keep taking the purinethol until after my fifth remicade infusion, as dictated; and I will continue on the remicade infusions until my body has a negative reaction.  After that, I'm done.  I'm shifting therapeutic intervention to the shoulders of diet and supplements... and I'll use my doctor for more dire incidents... such as a referral to a nutritionist that my insurance will cover. 

If you have not already supposed, tonight's sardonic ramble is in honor of finally hearing from Dr. S after his month-long hiatus.  I had left a message requesting that Dr. S look over my now-two-week-old SBFT and interpret the next appropriate treatment steps for himself, knowing so well as he does my history (refresher).  The point of this request, my friends, was to hone in on taking steps forward in figuring out what exactly the intestinal obstacle is here, and how to work through/around it.  I thought this was fairly reasonable to ask.  Apparently, I am gravely mistaken about the directives of palliative medicine.  Apparently, it is much more efficient to take steps backward, as long as so doing is sure not to increase medical malpractice premiums.

Dr. S's nurse called.  He wants to know what my current symptoms are.  Oh good, so he's going to make the connection that I made two weeks ago (see refresher) and assure me that this is clearly not a job for prednisone anymore, that remicade should kick in in seven more weeks and that until then it is important to stay on the purinethol which is still doing at least something helpful? (it is).  Apparently, he is not.

The most pressing component to the last five weeks of my condition's development, in my renowned doctor's eye, was actually not the new stricture in my small bowel (which he didn't seem to think was there, btw), nor the constipation (which could easily be explained by the PPR cocktail), nor the continued abdominal pain (although significantly less frequent than four weeks ago... I did an ANOVA...).  No, no -- in fact, the silver bullet onto which my doctor has latched his clearly very personal ambitions for my recovery... is prune juice.  Indeed, the very prune juice I informed him that I have been drinking for the last two weeks despite the overwhelming sugar content, which causes problems of its own.

"Dr. S recommends that you increase the number of times a day you take the prune juice. Maybe try it 2-3 times a day and see what happens?"  The poor, tired voice on the other end of the line tries to redeem some thread of medical integrity from the doctor's message.

"Well, what happens when I drink 12oz a day instead of 6oz is that I induce a Throughput episode on a pain-scale rivaling the one that put me in the ER when this began 3.5 months ago."

"Ah... well, let's keep it at 6oz, then."

"Right-ee-o."

I would have been totally cool with this discussion had it included any pharmacologically relevant reassurances such as those posited in the preceding paragraphs.  It really doesn't take much to please me -- he didn't even need to give a correct diagnosis; all I needed to hear was some kind of medical reasoning or postulation and I would have been on cloud nine because he turned a scientific(esque) phrase.

And so, you see, I'm done.  Certainly not with Western medicine, because it gives me the tools to interpret my condition.  I'm just done taking my doctor seriously.

By the by, the Gastroenterology and Hematology department doesn't know of any nutritionists within the System who specialize in IBDs... but they suspect there are several who have IBDs patients all the time. ... Is there a reason they can't look into this for me?  I'm not sure I can think of one.
In all fairness, I am showing continual improvement in the pain and food-variety departments, it's just somewhat masked by all the other effects, some of which I can explain away and others I can't because, well, I'm not a gastroenterologist.

Food of the Day: Cauliflower

Cauliflower is part of the cabbage family, so admittedly, it does have the potential to make one somewhat gassy.  I don't know about my compatriots, but my Crohn's Baby is adamantly convinced that all food is from the cabbage family.

It is, however, also an excellent source of ascorbic acid, which aides the absorption of iron (Hallberg & Rossander 1984); vitamin C, an antioxidant and immune booster; folic acid, preventing anemia and promoting healthy cell growth; and choline, with anti-inflammatory activity.  The high indole-3-carbinol and sulforaphane content of cauliflower are also cell division regulators, and implicated in the prevention of certain cancers (Ambrosone et al 2004).  Cell division, also being part of epithelial turnover in the intestines, is important to moderate in autoimmune diseases such as Crohn's/Coeliac, etc.  Perhaps most importantly, indole-3-carbinol has been shown to inhibit NF-kB (a cohort of TNF-alpha) as well as its gene expression, an anti-inflammatory property (Yoon & Baek 2005).

In honor of this benign, SCD-approved vegetable, I conducted a food experiment today.  After trekking (more appropriately, shuffling on H.B.'s arm) to the grocery store to buy a food processor -- which I cannot affectionately dub Ninja on account of that being its actual name -- I made cauliflower soup.

Yesterday's post being such a profound downer, I felt it opportune to renew my own vigor by diving into the potential benefit of pureed vegetables.  The beatific solution to maximizing veggie goodness while minimizing the incidence of internecine Throughput: make it mush.  Yes?  We'll have results in two days.

Steamed cauliflower pureed with sun dried tomatoes (less acidic than oranges, pears or olives, by the way, at pH ~4.6) and green onion, then boiled in low-sodium chicken broth with some basil and garlic (this is me asking for trouble).

 

'twas really, really good.

Pittering

Good morning, P.M.!   I'm tired.  I'm tired of waking up at 4am almost every day after waking up at least three times during the night to oblige my full bladder and/or angry bowels.  It's like house training a puppy who doesn't have circadian rhythms.

My renowned GI, who supposedly got back into town last week, did not manage to communicate with me.  I'm about ready to give up on solving the mystery -- which is to say, the Diet and Doctor Experiment -- and just accept that I have a new pace with a heightened baseline level of pain.  P.M. and The Compulsion, however, who are rapt and scrupulous scientists, are not pleased with this option.  They prefer to encourage this moribund progression wherein I slowly lose sight of my sanity in the face of being overwhelmed with both task and absence of physical momentum to achieve said task, while continuing to conduct the Diet and Doctor Experiment.  

November is a horrendously packed month, and has the potential to be the greatest I've seen in quite some time.  It does require, however, that I be -- to a degree convincing to my boss, coworkers and family -- mentally and physically functional.  I'm so tired.  Let's go read some journal articles and finish those graduate school applications...

On the Evolution of Eating Animals

Everyone writes about vegetarianism and veganism in terms of either animal rights/worker rights/environmental sustainability or health/nutrition.  And never the twain shall meet.

I caught a post by Natalie Portman on HuffPost this morning about Jonathan Safran Foer's new book Eating Animals.  It may be the first time I've appreciated Natalie Portman since Leon: The Professional... or, perhaps, I'm just appreciative of the HuffPost editors.  In any case, I was frustrated, yet again, by the book's lack of discussion of the evolution of human health alongside the evolution of the animal farming industry.

Why doesn't anyone talk about how the need for meat in the human diet has changed with our changing physicality/intellect and industry/economy when the context of one is so important to understanding the other?

Closer, but no cigar.

I'm too burnt into the ground to explore this tonight.  When this rush-week is over and I've done my presentation, compiled necessary data for November's grant, finished my post-doc's manuscript, submitted my grad school applications, gotten an inkling of sleep between aberrant episodes of Residual Weekly Throughput and relieving the ever-full bladder... I'll do this subject follow-up-justice.

Curtailing Monday

It appears that I have lied again.  The Weekly Throughput has arrived... on Tuesday?  I attribute the 48h delay to PPR/food, and the significant decline of accompanying pain to the 6oz of prune juice which I have endowed my guts every day for the last week.

I supposed it is only fitting, since today is the 27th.

Slaking the Compulsion

The Compulsion and P.M. aside, I actually slept in until 830am on Sunday.  Granted, there were about four half-consciously bumbled trips to relieve my ever-shrinking bladder, but otherwise an impressively sound sleep.

The Compulsion wins when I am unable to turn off the barage of "what ifs".  If I didn't have a car, I would have had to walk to the transit station at 6am in the pouring rain and black freezing cold while having an attack... and I would not have survived.  If H.B. wasn't also currently stay-at-home-boyfriend, I would not be able to solicit his chauffeuring services on days when I don't think I'll make the bus ride home without an incident... and I would not survive.  The Compulsion doesn't like to let me enjoy these small pleasures, these cosetting habits of which I take advantage, because it thinks that without them I would be lost.  Thanks ever so much, Conscience, for reminding me in such anxious terms that I depend on certain luxuries in order to function.

This weekend is the first that I can report, aside from the bloated pains of having anything in my gut at all, there was no major attack. ....?!! That's right.  The oxycodone bottle sat neglected on the nightstand.  For the first time in 3 months.  Another luxury on which I depended this weekend, without which I would not have been able to put together my journal club presentation, or edit my post-doc's manuscript, or write an already belated letter to my aunt, or put together Halloween gifts for the lab. 

You know something, though?  This weekend was lovely because The Compulsion and P.M. did not win.  It's just not healthy to assess everything you do in life based on how easy you have it while you're doing it.  I've earned my life.  What luxuries it has, I've proven myself capable of functioning without before.  Just because I'm living easy now doesn't mean I've forgotten how to work around obstacles when things are not so pleasant.  In fact -- and hilariously -- I touted that strength in my Statement of Purpose.  Never convinced that I have enough time (when I always make sure I do); never convinced that I'm not taking the easy way out (which usually results in my burning the candle at both ends).  I blame P.M. for revitalizing The Compulsion, but I blame myself for letting it rule over rationale.

There is always time.  There is always warrant for method.

SBFTs and Poor, Confused Gastroenterologists

I'm having fun.  And more importantly, I think the hospital is having fun.

The results of my SBFT are as follows:  Dr. P sees strictures in the small bowel, but they aren't very tight, so he's not concerned that surgery is imminent, but he is concerned if I are still on 40mg/d prednisone... (which I am) 

The problems with this response are as follows:  1) Dr. P is the on-call doctor who is the surrogate for Dr. W who is my not-on-call surrogate for Dr. S who remains incommunicado until next week.  So basically, I have access to nobody who has a "complete" understanding of my history.  I may not be a doctor, but I was close enough to becoming one  four months ago that I can tell you that medical history is kind of important when interpreting the results of any medical test.  Sorry, that's just how it works.  2) Since Dr. P followed up his interpretation of my SBFT with the questions, "are you still on prednisone?" and "what are your current symptoms?", I have deduced that being on-call he did not feel compelled to look at my history before telling me what my SBFT meant.  Therefore, I can more accurately tell me what my test means than he can.  'Ya ready?

My interpretation is as follows:  I think that I was correct in predicting stricture(s) of the small bowel based on the observations that the location is new, and that the pain has been persistent despite the prednisone, which, were this a normal inflammation would have slaked the flare and turned it to scar tissue.  I think that the very slow evolution of nausea/emesis/bloating since April of this year to incredible new pain/back-up supports the idea that a stricture has been developing.

"Patients may not know that they have an intestinal stricture. The stricture may not cause symptoms if it is not causing significant blockage (obstruction) of the bowel. If a stricture is narrow enough to hinder the smooth passage of the bowel contents, however, it may cause abdominal pain, cramps, and bloating (distention). If the stricture causes an even more complete obstruction of the bowel, patients may experience more severe pain, nausea, vomiting, and an inability to pass stools." (1) 

I think that Dr. P's suggestion that I begin tapering off of prednisone is excellent, considering how long I've been on it and how little it's done to help the problem.  Finally, I think that Dr. P's suggestion that I go back on "soft foods and liquid diet and see if that improves things" is bullshit.  Had he looked at my recent history, he would have seen that I just started reintroducing solid foods, and he would have made the connection that it was probably not a good idea to tell me to take a step backward without suggesting how to help me move forward.  Am I wrong? 

Disclaimer: I know that being a doctor is hard.  I know that insurance companies and Big Pharma have infiltrated the world of medicine in the most destructive and back-breaking ways.  I know that 90% of a doctor's non-patient time is spent dealing with the utter nonsense draped before them by the two monsters that dictate the way they practice medicine.  However, I have absolutely no tolerance for the inability to take ten minutes to figure out what is going on with the patient before making a diagnosis.  The Bernstein paper I cited the other day says something about SBFT's being so ancient that very few are read properly unless they are read in a radiology center with a SBFT specialist.  This observation in concert with Dr. P's seemingly confused and half-assed diagnosis... has me concerned.  But I'm having fun.  Truly.

In other news, this is Lamar.  Due to the extrusive nature of the PPR-face this year, he is part of my Halloween costume.  What.

Tofu, Squash and the Microbial Squadron

In the quest to ween off of the short-term friendly diet base of breads and rice, I am finding two things:

1) My allergies dictate that a myriad of exceptions from the rules be formulated, and

2) These diets -- particularly the ones that are based on moving away from modern food-preservation and agricultural technology -- are far too nit-picky for my stress level.  That is fantastic for people who can and/or need to be that scrupulous with what they put into their bodies (often Coeliacs and Rheumatoid Arthritics, both malabsorption-centric), but not for me.

Current quests: 

1) to replace most rice noodles with various stringed squashes, and

2) replace most breads with tofu.

Current obstacles:

1) If my SBFT results come back rampant with strictures, I will not be able to eat stringed squash, and

2) tofu is "illegal" on the SCD diet (my guiding reference).

Current absurdities:

1)   Spaghetti squash is high in complex carbohydrates.  Why is it on the SCD diet if this is so?  Because these complex carbohydrates are not starches (2), the favorite sustenance of the microbial squadron.  Therefore, spaghetti squash is excellent for the SCD diet, but not so excellent for me... in terms of making it through my system, rice noodles are better.  Sacrifice the carbohydrate eradication or risk intestinal rupture?  This is going to involve a very slow process of replacing carbs with fiber one food at a time; elsewise, my poor brain will not be able to suppress the hormonal onslaught of PPR-bred anxiety.

2) The reason that tofu is illegal on the SCD diet is because of the ambivalence of its carbohydrate content.  Apparently, no one has bothered to figure out what carbohydrate prevalence results from the fermentation and processing of the genetically manipulated soy beans that beget tofu.  My condition at the moment is more defined by "solid substance sensitivity" than by my concern for entirely starving out the microbial forces in my gut (see above).  Therefore, the carbohydrate content of tofu being so minimal as compared to its protein and fiber content -- even as its carbohydrate chain specificities are unknown -- I will allow it.  I simply can't afford to eliminate everything by-the-molecule, only to reduce.  Baby steps.

Additionally, screw complete elimination of rice because if I cannot eat sushi once in a while life is just not worth the hassle.

Statement of Purpose

Today, following a morning of writhing on the bathroom floor and an afternoon of walking around PSU's farmer's market in the South Park Blocks, I finalized my SOP.  The following are a compilation of my recommendations for aggressively tackling this process.

1) Choose your layout strategically.  I had two separate drafts in front of me this evening.  The first was a statement by chronology, the second, a statement by subject.  Print out a draft, cut up the paragraphs, have a seat on the living room floor and rearrange your topics until they become more adhesive.  In my case, things were made much stronger by topical layout.

2) Show your SOP to your letter of recommendation writers. Your letters should fill in the blanks that your SOP doesn't expatiate.  My boss, for instance, included an anecdote about my being singled out by the benefactor of one of my undergraduate research grants at the reception following my presentation (which I did not know she was attending!), and that this woman is now a friend of mine.

3)  Keep the intro short and powerful.  Honestly, three sentences introducing your unique passion, your resolve and perhaps a plug for the program are all you need to be epic, here.


4) Every paragraph should relate back to your research interests, experience and future.  Don't talk about what a passionate, hard worker you are; show how you are and what you've done.

5)  Read out loud.  Seriously.  All of the errors that your eyes didn't catch will be like fresh wounds to your ears.

After five drafts, I am finally proud of my self-representation.  I struggled more with this essay than any other I have written in my life. 

On MRIs, Small Bowel Follow-Throughs and CT Scans

Dr. W is apparently my surrogate GI until Dr. S is back in town.  He is concerned about my symptoms (the Weekly Throughput and ossified left intestine), suspects an obstruction (stricture, fibrosis, or scarring) and wants to do a small bowel follow through.

At this point, I realize that without these magnificent instruments of medical speculation, I really have no freaking idea whether the left side distension/rigidity is my sigmoid colon or duodenojejunal flexure (the former being almost directly anterior to the latter).  I also have no freaking idea what's going on in my Prednisone-resistant mid-lower small intestine.  What I do know from historical diagnosis is that I have ileal obstruction (on the right side) which has been fairly reticent during this flare; not particularly helpful in addressing the small bowel pain and left side distension/rigidity.

In the last two months, I've been recommended an MRI, a CT scan, and now a small bowel follow through (SBFT).  The first two were suggested by Dr. S, the last by his surrogate.  The reason endo/colonoscopies are not on this list is because they have shown zero new information about my new symptoms as they have developed over the last eleven years.  Endo/colonoscopies don't span a great breadth of the intestinal tract (endo goes down to the duodenum, colono goes up to the top left juncture of the descending colon).

For those who are equally confused as to why their GIs can't make up their minds about which procedure is best for diagnosing which kinds of Crohn's or IBD symptoms, below is a compilation of my findings.  The general concensus seems to be that SBFT are more accurate in identifying strictures, and MRI and CT are better at identifying fistulas, abscesses and active inflammation in deep tissue.

In a study comparing MRI and SBFT (Bernstein et al 2005):

"SBFT revealed additional information in four [patients], including a stricture (none found on MRI, n=1), jejunal site of obstruction versus unclear site on MRI (n-1), and ileosigmoid fistulas (n=2)."

"For tight strictures, SBFT gave information on number but did not delineate findings between the strictures, or on extramural disease.  Obstruction and stricture detection was comparable but characterization was more detailed with MRI."

In a study comparing MRI, CT and SBFT imaging of the small bowel (Lee et al 2009):

"The mean number of bowel segments other than the terminal ileum with active inflammation per patient was slightly higher as detected by using CT enterography and MR enterography than it was as detected by using SBFT.  However, these differences were not significant.  The level of agreement between the readers was excellent for CT enterography, MR enterography and SBFT."

"The low level of agreement observed for SBFT may reflect inherent disadvantages of this technique, including incomplete evaluation of bowel segments located deep in the pelvic cavity owing to overlapped bowel loops and suboptimal evaluation of the small bowel distal to the tight stricture (10, 12, 32)." (Note: The paper doesn't specify how the SBFT were conducted, but I know that during this procedure they have the option of pushing your guts to one side or another to get a better image if they want to, so in my opinion this observation is inaccuate)

"CT and MR enterography were more capable than was SBFT of depicting extraenteric complications of CD, including fistulas, sinus tracts, and abscesses.  Although our findings are consistent with findings in most previous studies (4, 10, 12, 33), conflicting results have been reported for the detection of enteric fistulas and sinus tracts (4, 10, 33).  Bernstein et al (10) compared MR enterography and SBFT in 30 patients with CD and found that SBFT allowed identification of two ileocolic fistulas that were missed using MR enterographic images."

In a study looking at the accuracy of CT enterography preoperative diagnosis in the small bowel (Vogel et al 2007):

"For the 36 patients, the presence or absence of stricture or fistula was correctly identified by CTE in 36 (100 percent) and 34 (96 percent), respectively." (Note: Since "preoperative diagnosis" can be assumed to refer to the presence of a stricture, I think it is implied, here, that the CT scan is an accurate way to identify small bowel obstruction.)

"SBFT is accurate in the prediciton of fistula, stricture and mucosal abnormalities with specificity and sensitivity reported in the 85 to 95 percent range (MacKalski & Bernstein 2006)."

"In the 18 patients with one or more strictures, CTE was correct for stricture number in 12 (67 percent)."

A review of Crohn's disease imaging advancements (Grand 2009):

"The small bowel series and barium enema are essentially historic examinations for the detection and evaluation of inflammatory bowel disease.  These studies, while effective at detecting mucosal abnormalities, are poorly tolerated by sick patients, provide assessment only of the bowel lumen (particularly the mucosa) and are physician dependent, limiting their reproducibility.  A properly performed and interpreted SBFT or BE is unfortunately a lost art..." (Note: Again, SBFT seems accurate for identifying fibrosis, but not deep tissue inflammation in active Crohn's)

"The ability to assess disease activity is probably the most important advantage of MRe over CTe.  Clinically, it is often difficult to distinguish between active and chronic changes of inflammatory bowel disease in symptomatic patients.  This distinction has become increasingly important with the advent of new, boilogic therapies for active inflammatory disease which, while extremely effective, are expensive and may also be potentially toxic.  Although beneficial for patients with active inflammatory disease, these agents do not benefit patients whose symptoms are secondary to a fibrotic stricture.  Rather, these latter patients will require surgery for symptomatic relief" (Note: Since I am currently on biologic therapy, it's pretty important that I be able to figure out whether the last three Remicade infusions were not even necessary.  If I end up needing surgery for a stricture as Dr. W suspects... I'm going to be pissed that Dr. S put me on the PPR combo so hastily.)

"Because negative contrast is used for CTe, small abscesses may be difficult to distinguish from loops of bowel and regular CT or MRe should be employed if abscess is suspected or in the immediate post-operative state." (Note: In agreement with Lee et al paper)

Of Milestones, Aliens and Confused Symptoms

Well, two hours ago I had hoped to announce this weekend as the first during this flare which has not involved a major Throughput episode.

I had hoped to attribute this feat of baby-step recovery to my self-inflicted intervention with protein and soluble fiber, in concert with my third Remicade infusion.

I had hoped to say that the tide had begun to turn!

Now that Sunday's Weekly Throughput has occurred, I must report that, although sustained, its might was 2/3 that of its usual caliber.  Hazzah!  Hazzah?

Yeah.  It seems that the tide has just become indolent.

Evidently, I woke up in the middle of the night last night with a tightness in my abdomen, flailed until I woke up H.B. who, in turn, woke me up enough to tell him of the accompanying nightmare in which I was Jesse Ventura in Predator and had just had my guts blown out of me by a laser grenade, and proceeded to koala the poor boy until once again losing consciousness.  So, when the tightness in my left small intestine returned this afternoon, the half-aware nostalgia was bemusing.  Today was the first showing of this symptom which I attributed to Backup until the Weekly Throughput occurred.  Now that it's over, the tightness remains.  Noted.

Conclusions:  The attenuation of pain during the Weekly Throughput, although gradual and minuscule, is continuing.  This week I introduced tiny portions of cooked root vegetables and mushrooms, Tofutti BTCC, and low-sugar pomegranate juice.  Seeing as the flare has not responded in escalated rancorous retaliation, I am comfortable  suggesting that it matters slightly less what exactly I'm putting into my system, and more that I'm putting things into my system at all.  This has been my perspective from early on.  Apparently I have a message from another GI -- who Dr. S's nurse was kind enough to recruit in lieu of my latest symptom update -- to retrieve tomorrow morning; and, apparently, he has a suggestion for me...

SFN!

My poster is going to the Society for Neuroscience meeting in Chicago without me!

If you're going to be there, and if you are not presenting your own poster between 1-2pm on Tuesday (as are my favorite college professor and boss, about which I am really bummed cause they wont meet each other)... check me out.  I'm #CC-67.

On the Evolution of Diet

My experience has always been that during the ebb of a Crohn's flare, carbohydrates pass with the least residual damage.  In the long term, however, carbohydrates are increasingly the spotlighted culprit of havoc-wreaking; and not solely by way of Klebsiella.

I've flirted with the Paleolithic (or, SCD) diet before; before diving headlong into this most recent flare (2.5 mos, and counting), I was balancing quite nicely in a Me Friendly version of the Paleo diet.  Because I had only been doing so for several days before The Fall, and because my gastrointestinal condition had been sloughing downhill for almost a year, I wasn't able to give the diet a legitimate chance.

Now that I'm working on climbing out of this crevice, however, I'm trying to shift my current selection of solid foods away from Carbo Loaded and into Paleocentric orbit.  My Me Friendly version of this was additionally limiting the red meats (fats), nuts (fats and allergies) and very fibrous vegetables (obstruction).

What I aim to do nearly without:
dairy (no brainer)
sugar (no brainer)
salt (no brainer)
grains (categorically similar to dairy in terms of damage, but I don't seem to have a gluten problem so we'll keep those with low glycemic indices)
legumes (see above; I could never entirely eliminate legumes...)
red meat (fats)
nuts (fats and allergies)
berries (seeds)... These last three are part of the "Do Consume" stipulation of the Paleo/SCD diets; alas, knowing that they destroy me I cannot invite mucosal carnage.

What I aim to tolerate:
poultry and fish
eggs
fruit (without pulp or small seeds)
root vegetables (non-stringy)
fermented foods (this should be interesting)
other foods with low glycemic indices

I'm typically quite skeptical of the hardcore diet reversions that try to re-plant us in the days before preservatives and cooking.  Most of the diets that come recommended with Crohn's are pre-processing, or Paleolithic era (Dr. Balzer summarizes this nicely).  Atkin's, Raw Food, SCD-- they're all based on caveman diets.  And that's fine, except that we haven't been Cro-Magnon for 20,000 years.  Very, very few proponents of these diets take into consideration the evolution that has occurred in the human gut during the gap between then and now (not to mention the inherent shift in caloric intake).  I'm truly at a loss as to why. 

It's sort of like how Western culture touts that if we all ate three rice-based meals a day -- heavy on the salts and carbs, mind you -- we'd all sport Asian slender, low cholesterol and have beautiful creamy skin.  This false-cause fallacy forgets that one can train the body to produce the proper enzymes to accommodate such an adjustment, but it's not all about enzymes... there are genes involved (Ley et al 2008; Bengmark 1998).  The anthropologists argue that we currently evolve too rapidly for these genetic influences to accommodate (Kligler & Lee 2004); my position continues to be that epigenetics and post-translational modifications negate that stance.  The microbes that inhabit our gut and help us process food have co-evolved with us, any may respond to a dynamic change in diet either positively or negatively depending on your physiology and genetic predisposition.

My bias is moderation.  Unless you have a predictable or distinguishable allergy, it is usually not helpful to eliminate something from your diet entirely.  Gluten, yes.  Dairy, okay.  Carbohydrates, not so much.  Fruit, definitely not so much.  I can't do a hardcore Paleolithic or SCD diet because I have never been able to limit my diet that strictly for an extended time without invoking a flare -- which is something else the caveman diet prognosticators tend to neglect; the importance of variety.  Variety is why people on the Homeopathic route take Probiotics. 

I also have a resistance to thoroughly processed foods heavy on the preservatives, sugars and salts; this resistance escalates to phobia when I am on PPR.  The Ley group argues that the evolution of agriculture and cooking didn't have an appreciable effect on our Gut Flora -- that the preparation of otherwise inedible grains which are the primary sustenance of our microbiotic friends did not significantly encourage their co-evolution.  Others suggest that these new tools were the paradigm shift that brought about an exponential predisposition to gastrointestinal disorders.  My bias aside, there is more sufficient evidence for the latter case from genetic, microbiological, anthropological and other fields (Cordain et al 2005; Wrangham et al 1999). 

So we'll see how this unfolds.

Of Sushi, Star Trek and Klebsiella

Enough of these Crohn's disease-linked genes!  I found this phenomenal post the other day from Dr. Ayers at the College of Idaho on a link between a particular flora and Crohn's disease.  Klebsiella pneumoniae is a bacteria that colonizes in the healthy mouth, lungs and intestines.  Dr. Ayers writes about the excess of this bacteria in the intestines of Crohn's disease patients.  Its role in Crohn's patients, he suggests, may be related to its ability to produce hydrogen gas, on which the notorious H. pylori feeds.  Here is the bridge:  carbohydrates feed Klebsiella, which produces the hydrogen gas that feeds H. pylori, which then destroys the mucosal and epithelial lining of the stomach and upper intestines...

Intrigued, I of course had to hunt down the primary literature of these claims (tsk tsk, Professor Ayers!).  Below is a compilation of my favorite excerpts; this is a beautifully put together review paper by Rashid et al 2009.

"Klebsiella microbes have been isolated from the large bowel biopsy specimens in more than 25% of patients with CD or UC [42], and relapses in patients with CD were found to be associated with Klebsiella intestinal infections [43]. In a study using immunohistochemistry, however, it has been observed that the majority of patients with IBD had negative staining
specimens for E. coli, L. monocytogenes and K. pneumoniae taken from the bowel mucosa [44]. These latter findings indicate that it is the microbial bulk in the intestinal lumen rather than at the sites of the pathological lesions, which is important in evoking both local mucosal and general antibacterial immune responses.

"Elevated levels of antiKlebsiella antibodies have been reported in patients with CD from six different centres in the UK (Table 2). Significantly elevated levels of antibodies against K. pneumoniae and Y. enterocolitica microbial agents were observed in patients with CD and UC when compared with healthy controls [48]. Similar findings were later shown by other groups from Scotland, where IgA antibody levels against K. pneumoniae were found to be elevated in patients with AS and IBD [49,50].

 "Klebsiella microbes possess a powerful debranching enzyme, pullulanase, which is a molecular complex consisting of 17 components and some of these exhibit molecular mimicry with several collagens. pulA cross-reacts with collagens I, III and IV [46]... Significantly elevated levels of antibodies against Klebsiella microbes as well as autoantibodies to collagens I, III and IV were observed in patients with AS and CD [55].

"The hypothesis proposed is that exposure to the cross-reactive antigens of pulA found in Klebsiella pullulanase leads to the production of autoantibodies that can have a pathological effect on the collagens found in the intestinal mucosa and eventually lead to the characteristic lesions of established CD (Fig. 2).

"In a study carried out by a group from Los Angeles, it was observed that the mean number of faecal Klebsiella microorganisms in individuals taking high-carbohydrate/ low-protein diet was 40 times higher than in those individuals receiving low-carbohydrate/high-protein diet [69]. In a comparative study, it has been observed that the mean number of Klebsiella was 10 times higher for simple sugars per gram of substrate compared with the value obtained after incubation with 11 different amino acids [70].

"A clear link is observed between increased intake of starch and the bulk of intestinal microflora, among which Klebsiella microbes constitute an important part. High dietary starch intake leads to increased growth of these microbes in the bowel."

 But what about the provision of hydrogen gas to H. pylori by an intestinal Klebsiella bloom?

Crohn's patients have a heightened immuno-sensitivity to Klebsiella microflora (Rashid et al 2009).
Klebsiella yields a high molar ratio of hydrogen per starch (Chen et al 2005).
Hydrogen gas feeds H. pylori (Olson et al 2004).
Klebsiella feeds on starches, mono- and disaccharides (Rashid et al 2009).
Ergo: starve out the Klebsiella with a low starch/carbohydrate diet, and in doing so, starve out the H. pylori.  Lowering your H. pylori levels, if this particular bacterium is a prominent contributor to your Crohn's, IBS or Colitis, may substantially alleviate a great deal of epithelial destruction, and suppress the inflammatory response.  I like it.  Go, science!

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In other, more important news, last night was homemade sushi and Star Trek night.  Tuna, crab, Tofutti BTCC, avocado, Insurrection.  There are just too few relaxing evenings that even come close to challenging that.

Food of the Day: Pumpkin Cheesecake

"To live in a creative way requires extreme and sensitive perception of the orders and structures of relationship to individuals, society and nature.  In this case, creativity can flower.  It is only when creativity is made subservient to external goals, which are implied by the seeking of rewards, that the whole activity begins to whither and degenerate" -- David Bohm & F. David Peat; Science, Order and Creativity

Yesterday's adventure to the South Park Blocks Farmers Market with my parents resulted in the acquisition of some very tasty treats.  Among them; chanterelles, orange anise sugared buns and a particularly eminent Sun Spot pumpkin.  A little inspiration from Mom lead to the conclusion that since everything I eat, no matter how mild, seems to feed this flare, there is no reason to so conservatively restrict myself.   Why not use the tools at hand to do some more creatively aggressive tracing of causal relationships?

The quote above from David Bohm and F. David Peat's book is an homage to our conversation in the bustling Market: I have decided that my GI's current adherence to "external goals", aka palliative diagnosis, is impeding on my recovery.  Deferring the goal of quelled symptoms to a more subordinate one, I can explore (carefully) the next steps in terms of testing my tummeh.  This quote -- and this book -- mean many other things to me, but as does most incite from these great physicists, it applies to the manifestation of every infinitely small constituent of existence... especially food.

In other words, my remaining October adventure will be directed at distilling a more comprehensive food-pain pattern.  The more closely I watch the 30hr digestion mark, the more easily I can isolate which episodes are Crohn's, which are IBS, which are from what food and which are/are not clinically improving from the Prednisone-Purinethol-Remicade (PPR).  We'll get into which medication is solving what problem later down the line... right now they are just superfluous variables, and that is bad science.

Therefore (!), avocado, beans, broth and bread; you're lovely, you're truly spectacular foods, but I need to feed my poor immune system some substantial nutrients... 

Tonight I made chicken and chanterelles in a white wine reduction and coconut milk sauce.  Rotini bed not shown.

This Sunday afternoon, however, was devoted to the Dairy-Free Pumpkin Cheesecake Experiment.  Using my Eminent Market pumpkin, I augmented this awesome recipe from Elana's Pantry.  Instead of using whole milk yogurt (which would unequivocally be my undoing), I used a 4oz tub of Tofutti Better Than Cream Cheese (which was proportionally perfect).  I also reduced the amount of Agave nectar, went light on the vanilla extract and added some nutmeg.

 

 

 

Sidenote: Yes, I do have a squash, pumpkin and general October obsession.  You are so lucky that I have refrained from posting about Candycorn and my glow-in-the-dark skeleton oven mit...