Anyway, all the tests came back negative. Blood tests for celiac disease and other things, poop tests for parasites and bacterial infections and exocrine pancreatic insufficiency and other stuff. As anyone who has had to do them knows, poop tests are the worst: poop into a container, then, depending on the test, either mix some with various solutions in vials or just dump some in a container and freeze it. Then take it back to the lab. "Hi, here's my poop." Nice. We didn't bother with a colonoscopy because he said he thought it unlikely that anything would show up (and I agreed, based on everything I'd read); I ended up getting one a year or so later, and, not surprisingly, my colon looked happy and pink and unadorned with polyps or anything nastier. Two days after the test, my gut was back to its usual tricks.
So I'm left with IBS. IBS and all of its cousins and more distant relatives, like Inflammatory Bowel Disease (IBD), Crohn's Disease, ulcerative colitis, diverticulitis, etc., all suck on their own, but they're made worse by the fact that nobody wants to talk about them. And you never see anything about these problems in the popular media, unless it's to make a joke; aside from Adriana La Cerva in The Sopranos, who talks about having IBS before getting whacked by Silvio, I don't remember ever seeing a character who had a gut problem -- and even Adriana is made the butt of a few jokes (pun intended). Now, I understand this: it's not the kind of conversation that anyone wants to have.
"Hey, Bob, how's it going?"
"Not bad, Steve, although I was stuck in the bathroom for an hour this morning with diarrhea that just wouldn't quit. Had cramps and really awful-smelling gas to go along with it. How about you, how's your poop these days?"
"Good! Yeah, once a day for me. I get constipated every couple of weeks, but after a day or two I'm pretty regular again, though the first one hurts quite a bit."
Yeah, real good dinner conversation. Funny how absolutely everyone poops, but aside from the nerdier gastroenterologists out there nobody wants to talk about it. I mean, funny in a completely understandable way. The problem is that that leaves those with the problems feeling pretty damned isolated.
So I read some more. ibsgroup.org was a nice place to find a community that understood, and I learned about different diets that people try, and the latest ideas about the causes of IBS. I ended up learning about SIBO: Small Intestinal Bacterial Overgrowth. It's basically a situation where bacteria that are good in the large intestine but bad in the small intestine invade the small intestine and set up a little village. The more the village thrives, the worse you feel and the more negative symptoms you have. A lot of the symptoms sounded awfully familiar to me, so I looked into it in more detail. When I found out there's a test for it (which is, thankfully, not a poop test), I talked to my gastroenterologist about it. He mentioned the negative response that I had to a short trial of Rifaximin which should have had an impact, but I reminded him that it was only a 10-day trial, and at a lower-than-normal dose for this particular purpose (which was all because of the fucking insurance company denying coverage for the 30-day, higher-dose trial that would have been appropriate, which would have meant a $1,400 out-of-pocket expense), so he agreed that it would be a reasonable test.
The test for SIBO is a breath test. The bad bacteria feed on sugars that the body can't break down, and the by-product of their consumption of this sugar is excess hydrogen, which shows up in the breath when it gets to the lungs. So the patient fasts for 12 hours after a day of eating a very limited number of acceptable foods, then a baseline hydrogen level is taken, then the patient ingests a small amount of lactulose (a complex sugar that's undigestible by humans) solution, then readings are taken every 15 or 20 minutes for a few hours to see if the hydrogen level in the breath increases above a certain threshold. In my case, the level did increase above that threshold -- but it increased slowly enough that my gastroenterologist considered it a negative result. However, he was concerned enough to show the result to a colleague of his in San Francisco, who considered the result "borderline." How typical of my body, to show a result that's in some netherworld between positive and negative; I think I inherit this from my mom.
My gastrodoc was reticent to start me on drugs, and I was pretty reticent as well, given past experience. So I tried to "treat" the problem with diet and probiotics. But none of the changes I made made all that much difference, and the one probiotic I found that seemed to help only helped a tiny bit.
At some point in this process, I read about a book that sounded interesting: Breaking the Vicious Cycle by Elaine Gottschall.
It sounded interesting, and I was getting nowhere, so I bought it.
Elaine's hypothesis, based on the experience she'd had with her daughter and a bunch of scientific evidence obtained from a bunch of doctors, was that most gastrointestinal problems are caused by a small intestine that's not doing its job correctly, which leads to a bunch of bad bacteria taking up residence and damaging the small intestine, which leads to the small intestine not doing its job correctly, which leads to more bacteria, etc. The short version of the root cause is that after some sort of initial damage to the small intestine, the microvilli of the small intestine are unable to process complex carbohydrates correctly, and a vicious cycle ensues. The solution is to remove ALL complex carbohydrates from the diet until the gut can heal, then re-introduce them slowly. How long this takes, and whether or not one can ever go back to a "normal" diet, depends on how damaged the small intestine is.
In my case, leaving aside the sharp uptick in symptoms after the appendectomy, a reasonable question is: what would have caused the initial damage to the small intestine? The answer to that is easy: buckets and buckets of antibiotics when I was a kid. I was the sickest kid in the world, and this was back in the dark ages, when antibiotics were the new wonder drug (I get really angry when I hear how often they're still prescribed for mild cold-like symptoms). I'd have a terrible sore throat, take antibiotics, get better, and no sooner was I better than I'd get sick again. I had my tonsils out when I was a couple of years old, much earlier than they usually did that operation even back then, and still I got sick all the time. I took Penicillin, Erythromycin, Tetracycline, and Declomycin (gallons of the stuff, it's the only one I liked because it was cherry-flavored). I think there were other Penicillin-family drugs as well, like Amoxycillin; I definitely took Dicloxacillin later in life for an infection after an ingrown toenail operation. When I was a teenager I took Sumycin for acne, and I still think that was a terrible choice by the dermatologist, but again, this was back in the dark ages, and what the hell did I know, I was just a teenager. I read someplace a year or so ago that if you take five courses of antibiotics your gut flora has been thrown out of whack; if there's even a shred of truth to that, my gut flora had no chance whatsoever, it might as well have been napalmed. In the past decade I've taken some of the newer antibiotics, like Cipro and Zithromax; but after having antibiotics turn my teeth gray (another wonderful side effect of massive amounts of antibiotics) and probably trash my gut, unless I have a bad fever I'll go weeks now before I'm willing to take an antibiotic for something.
So, is SIBO the problem that I have? I don't know, the test result was borderline, and therefore inconclusive; even if it is the problem, why things got so much worse when I had my appendix removed still remains a mystery. If it is the problem, will this diet help? I don't know; while the explanation in the book seems plausible, I don't know enough about how the gut works to know whether or not this approach should actually do any good, and even if it should, if it will in my particular case.
But I decided to give it a try. Unfortunately, being a vegetarian made this very difficult. Elaine provides an intro diet, and then suggestions about how to proceed after the intro phase, but all of it is very meat-intensive. This is not surprising, given the almost complete lack of carbohydrates in the diet: all you're left with are proteins and fats, and since most vegetarian protein sources (e.g., beans) are high in complex carbohydrates as well, there's not a lot of non-meat foods available, especially in the intro phase. So what I did instead of the intro as Elaine described it was simply eat anything on the "acceptable" list, without any intro period. This didn't work: there was only a slight change in my symptoms, and I was hungry all the time. I mean, it was like the jokes you hear about Chinese food: I'd eat an enormous meal of a salad and whatever, and two hours later I'd be starving. Elaine discusses the possibility of following the diet as a vegetarian, saying, in part, "Since soy products, including tofu, are not permitted on this diet, it will be very difficult, but possible, for a strict vegetarian to obtain sufficient nutrients and calories."
Well, it wasn't possible for me. So I bailed after only a week and a half.
And now, a couple of months later, I'm sick enough of my symptoms that I'm willing to give up my dietary choice of over 20 years to see if this will help, even without any sort of guarantee that it will. I'll be following the intro diet and meal plans that I found at scdlifestyle.com: they go into excruciating detail about how to prepare things and how to move from one phase to another, which will be very helpful to someone who hasn't cooked meat in over 20 years.
Tomorrow is shopping day, the next day is cooking day, and the next day It Begins.
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How funny to get up in arms over a free endorsement. I had never heard of your book before, but took note when I saw the image. Since reading this comment I no longer have any interest.
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