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!

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.

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.

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.

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.