My guts are gallivanting


The past few weeks have been… interesting.

me_wrysmile
Oh, dear.

I seem to have gastroparesis, because after every bite or two of food, I felt like I’d swallowed a cannonball, I’d still taste it up to five hours later, and even the thought of food made me nauseous.

At the same time, I seem to have wasting syndrome, because the other end of my GI system was working double-time and overtime. I was exploding on the toilet long after there was anything to explode with, whether I had eaten or not.

Toilet stall with graffiti covered with brown, yes, brown paint
It’s not what it looks like…

The weight loss has been a boon to my knees and hips, but the ground-in weakness is annoying.

The usual treatment is a “low-residue” diet, a shameful pile of poor nutrition and monotonous eating, consisting largely of things that I’m allergic or sensitive to — and steamed vegetables, which I can usually eat by the plateful, but can now barely manage a bite of, they’re so heavy with water.

I thought it over.

The Thinker, Auguste Rodin
Rodin’s “The Thinker”, looking very apt.

Both gastroparesis and diarrhea indicate an intestinal lining that is starving for antioxidants, and probably inflamed. Therefore, anything I eat is going to have to have antioxidants, because that is first-line treatment for tissues starved for antioxidants. Many antioxidant-rich foods are anti-inflammatory, so it’s useful for me to lean towards those.

The sluggish-to-trudging pace of intestinal motion, or peristalsis, is liable to under-stimulate the release of digestive juices, so anything I eat had better be easy to digest — or, better still, partly digested already.

Since I could only eat one or two bites at a time (and still feel rather ghastly afterwards), every single bite — in terms of both nutrition and flavor — had darn well better be worth the trouble of eating it!

Woman with eyes closed about to bite a cherry
Fabulous cherry by Jiri Ruzek.

I’ve been interested in good food since forever. My mother has been an outstanding cook all my life, and time spent helping in the kitchen was never wasted. She’s always been good at shoehorning a bit of extra nutrition into something in a way that improves the flavor. Dad would eat anything, so failed experiments were never wasted.

Because of my upbringing (traveling widely with a good cook on one side and a walking disposer on the other) I’m a fearless cook and a promiscuous eater, happy to try anything from anywhere, as long as it’s good in both senses of the word.

Earth with Place Setting. Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA
Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA.

On my sudden return from abroad in 2006, terribly weak, badly sick with CRPS, and having my heart broken in umpteen pieces by the most traumatic, trouble-ridden, devastating trip of my entire life, I found sanctuary with my friend L and her family. It took ten days even to notice which end was up, but then L said, as I snacked on something homemade from a jar, “It’s normal to eat a lot of raw food when your system has been deprived for so long. Give it another week and your appetite will get more normal.”

I considered being embarrassed, but I was too busy absorbing the impact of what she had said. I had heard her talking about “raw food” since I’d arrived, and I understood it meant cold-processed food that was carefully jacked to boost its nutritional value and digestibility.

I didn’t realize I was devouring it on an industrial scale.

backhoe, by Antti Leppänen
Veggie-loving backhoe by Antti Leppänen.

Knowing what I know now about the devastation at the cellular level that this disease can wreak — and the depth of disruption that even occasional trauma can cause, let alone a relentless, months-long parade of traumas — I’m not surprised. At the time, I found my attention sinking deeper and deeper into my body, and noticing a curiously profound ravenousness that only L’s un-cooking seemed to satisfy.

It actually took four and a half weeks… of grated beets lightly marinated in balsamic vinegar; young spinach dressed with fresh lemon juice and flax oil; pepitas dried with tamari and spices; crispy sesame-kale flakes; yogurt made from sprouted cashews; homemade nut milk; juice from apples picked an hour before they met their fate; tomato-leather from the garden’s surplus, stowed in the deep-freezer to make tomato paste and soup base in the winter. It was a feast of discoveries, or a discovery of feasts.

feast of beautiful food, most of it raw
Beautiful feast photo by Incase.

At that point, L asked if I’d mind kicking into the grocery budget. (I turned bright red, smacked my foggy forehead, and started taking my turn at the grocery store.) I did my feeble best, but I’ll never be able to pay back the real value of what they gave me, in terms of sustenance for the body, balance for the mind, and stability for the soul. L let me know when she had had enough of gratitude, so at this point, I just do my best to pass it on.

I recently replaced my blender, as the old one was blowing smoke, and I got a dehydrator too. In light of my nutritional status, I put them to use.

Here’s an example of the sippy-cup-sized shakes that I make in the blender…

Blender cup with ingredients for small, mostly raw, shake next to it.
My mini-shake makings, with an aperitif of bitters to get my gut to gear up.

… and the partially re-created flax-cracker recipe we’d invented all those years ago — the ones that smell like hot-dogs and taste like junk-food, and have more minerals and omega-3s than you could shake a Triscuit at. Mine aren’t quite hot-doggy yet (I used a lot of sesame), but they are, wow, really good just the same. Especially with a touch of grassfed butter, when they’re out of this world.

food_myflaxcrackers
Homemade flax-sesame cracker, with grassfed butter. Mmmmmm.

It has been almost 3 weeks, and I can finally eat a small meal once a day without significant repercussions. Also, I can be more than an hour from a toilet without fearing for my trousers.

I’m so far successfully denying the fact that the endocrine shenanigans of this disease have made it so that I can’t drop this excess weight unless I’m literally starving. I don’t think I’ve gotten above 1,000 calories per day more than 3 times since this started.

I’ll think about that later. Right now I have a sliver of raw goat-milk cheddar and a sprouted sesame-flax cracker waiting for me.

baby goats under their dam. One goat looking at us, one nursing.
Cute kids from Fir0002.
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4 Replies to “My guts are gallivanting”

  1. Have you heard of the GAPS diet? Gut and Psychology Syndrome, by Natasha Campbell-McBride. Might be worth looking into for your GI and other symptoms. I’ve had chronic GI issues for most of my life and developed CRPS 10 years ago. Been using GAPS not quite a year and GI has improved and CRPS as well right along with it –the two are related. I’ve actually started sleeping at night more often now –first time in many years.
    Best wishes to you.

  2. Oh my gosh! My gut seems to inhabited by a family of rats with flamethrowers. If I had only known, or my medicos had known that gastro issues accompany CRSP I might not have been treated for h pylori based on a blood test, I might not have lost my ability to walk unassisted and I might not have wanted to kill myself from the nasty reaction I had from the mixture of bismuth, flagyl and doxy. I lasted 4 days and spent a night in the ER, where I was treated to a never used mega port, which no one would believe caused me excruciating pain. I went home a mess, because not only was I given no pain medication, a pair of crutches, a lecture about pain meds and medical marijauna with no info on how to get it, but an incidental finding of an 8mm brain aneurysm. Gee, maybe someone might want to help me deal with this. Think again. After 4 weeks of self-treatment with mastic gum, DGL licorice, ginger , a stool test confirmed I was h pylori free. The PCP said, “you probably did not have h pylori in the first place.” When I requested a follow up test in a month just to be sure I was told to have an endoscopy and colonoscopy. My inner voice told me to delay, so I wait day after day, scared, in pain.

    1. I’d dearly love to treat your medicos to the flame throwing rats… dear gods and little piglets, an ANEURYSM???

      Check RSDS.org for good info, and they have a doctor list somewhere. Check your phone book for medical marijuana — look for euphemistic keywords like herbal, natural, relief, patient solutions, green compassion, etc. Also, you could call a local hospice and ask them how to find a good supplier.

      If you can cope with Facebook, look for the groups RSD/CRPS Research and Developements (yes it’s misspelled) and CRPS Warriors, and mention this blog. I’ll see you there.

      1. Also, that aneurysm has to be addressed. Is there a teaching hospital anywhere near you? I’d hate to send you to the same perilously stupid turkeys who sent you home with it.

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