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Yay! I have talked with a dietitian! I now know why the low residue diet is silly but necessary, and I furthermore have gained support for following an almost-but-maybe-not-strictly-"pure" macrobiotic diet. Not until after the low-res thing is taken care of, but the dietitian was helpful and actually gave me a timeline, unlike my eminently unhelpful GI who basically said "Follow these vague and unhelpful guidelines until we can set up an appointment for you to have a procedure that may or may not mean you have to have surgery."

No, now I have a very specific set of instructions: Stay low-res until the procedure, and if anything will make the surgery unnecessary, that will do it. If surgery is still necessary, then I can look forward to more low-res, but they will probably let me eat food with texture again after about a week, maybe sooner. And then I will be free to follow bizarre food regimes to my heart's content.

But until then, I really do have to stick with low-res. I had not understood the reasoning before, but basically the idea is that even if nothing appears to be wrong, any food with residue (i.e. vegetables, oatmeal, etc.) will leave the residue on the near side of my stricture. I wouldn't feel anything for a while, because liquids would be passing without a problem, but ultimately it could result in another partial obstruction or worse. The things I may or may not have eaten with residue this last week *innocent whistle* potentially have all piled up, but they may sort themselves out and go liquidy enough to pass through. And if the stricture is only inflammation, then giving it a week of plain, plain food ought to clear it up enough that they'll be able to tell that it was not a permanent, surgery-requiring stricture after all.

Apparently I am the sort of patient who really does need things spelled out, though. I found out that pretty much all the stuff that was not included on the list of allowed foods was not allowed for a reason, but even so, I needed the dietitian to explain to me why specifically. Peanut butter, for instance, has fiber, therefore has residue, therefore is not good for me right now. The thing my GI did not make clear to me, though, was that the low-res diet actually has the potential to fix the problem. The impression I'd gotten was that it was merely a palliative measure, kind of like telling someone with a headache to take an aspirin. They don't always take the aspirin, but it doesn't matter...
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I talked with my GI PA (physician's assistant: almost a doctor but not!) yesterday and became royally annoyed with her. After the hospital scare on Tuesday, I realized that I haven't really made an effort to follow up on the possible ways to keep myself healthy. For instance, I still eat cookies. Granted, cookies are very important to me on a reward basis and baking them is a nearly-ritualized destressing mechanism. But cookies and sugar in general are one of those things I overindulge in.

"So," said I to the PA, "I've been reevaluating and I think I would like to try changing my diet to see if that helps."
With horror in her voice, my PA said, "Don't stop taking your medications!"
"Um, I wasn't planning on stopping my medications..."
"And this is a serious problem (the stricture), which requires western medicine, you're just going to get yourself in trouble.""
"Um...I just thought maybe I should look at diet as something helpful...just, do you know a nutritionist I could talk to?"
"No. I don't know any nutritionists. I suppose I can look into it." And my PA ended the conversation rather quickly.

Upon reflection and a friend's helpful explanation of the difference between the terms "nutritionist" and "dietitian", I suppose I can understand why my PA thought I was going crazy...

"wanting to talk to a nutritionist, yep, she's going all holistic on me..."

Still...What the heck is a GI specialist doing not knowing any dietitians? Even if you don't want to endorse hippy-dippy alternative medicine, your patients could probably still use advice now and then on things like: what exactly am I supposed to be eating for the next month? Seeing as the clinic is taking its time on seeing me for the next urgent round of western medicine?

I pride myself on being in a medical field and understanding the science behind a lot of it. I am very aware of how hope and ignorance fuel a lot of false claims. I am also very aware of how there are gaping holes in our knowledge. The most common statement about IBD is "we don't really know anything about it." The second most common thing you hear is "there aren't any studies showing that diet affects it." Well, fiddle-dee-dee, there haven't been that many IBD diet studies done in the first place. It's one of those undertakings which terrifies researchers because of the sheer unwieldiness of the task. But as far as I can tell, the way the medical community has decided to handle it by dismissing out of hand anything that does not have a good scientific trial attached. As opposed to saying, "Ah-ha, here is an opportunity for a good scientific trial."

More to follow once I'm done with exams and can do some actual research and talking with people.
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Tonight is lots of pain. I forget about the pain. I complain about the mood swings and the jitteriness and sometimes the subtle twinge that sits just above my left hipbone. But I manage to forget what happens when the disease really gets rolling. It has been squatting just below my stomach, it feels like, making everything tender if I try to stand up. Then there’s actual cramps, distracting bolts of pain that are followed by a gurgling and momentary relief that leaves me almost lightheaded. Still can’t get up and walk around though. I mean, I can. But it actually hurts, and that’s what I forget.

Earlier I could feel a hint of it while I was at the nat, exercising. I should have stopped, maybe, and gone to take a break. Never mind about getting through the day efficiently. Crohn’s breaks down the partitioning that society loves so much, so it doesn’t matter whether this particular hour has a lecture you’re supposed to attend, or if you would prefer to walk back home for lunch. You can’t. You could, but you’ll pay the price when you upset your balance.

I did it by staying up too late last night. I only got five hours of sleep. I have trouble gauging my sleep needs. Prednisone sometimes wakes me up an hour early and I have boundless energy all day. It has a steep price, though. The next day will pay, or the next week. I wonder how much of today’s pain could have been avoided.

And how do we avoid the pain? It’s odd, but it takes a lot of self-indulgence. I somehow grew up believing that you’re only a good person if you push yourself hard. It’s an attitude common enough among my colleagues, even with the improved awareness of how emotional well-being plays into health. Now I’m learning a lot about how to indulge responsibly…I feel bad when I talk to colleagues and hear how much harder they’re working than me, but I’m learning to recognize which of those differences are due to the fact they are not sick. Until we know a heck of a lot more about immune systems and can cure this, I’m always going to have this illness.

I will have times of health, I have had quite a lot of good health recently, actually, but it’s a far more tenuous state of being for me. As nights like tonight remind me. I am caught between health and sickness. Even tonight, I am very aware of where I am on that spectrum. The stomach pain is wrecking my evening and my ability to study.

But I’m waiting it out, and what am I worried about?

That I’ll throw up. If I throw up, that means I have to go to a hospital so they can make sure it’s only my troublesome guts and not an indignant pancreas having a meltdown. Until then, I’m just in pain, but it’s temporary. It’s manageable. It’s not scary.*

Oh, another wave of pain. I sometimes compare Crohn’s to having a constant case of food poisoning. That’s what it feels like—like you must have eaten something wrong, and you just have to wait for it to work itself out of your system. I feel suspicious of carrots today. I had been avoiding carrots, and then a few days ago I decided to try steaming them. Oh, delicious! I had missed them so much. But I finished off, like, a cup of them today, and now I’m wondering if that was too much. I haven’t had stomach pain like this since I ill-advisedly had coleslaw this summer.

I would rather blame the carrots than say that my medications aren’t working. I would rather believe there was a preventable element. This is the other weird thing with Crohn’s, is that it just seems like there should be a perfect combination of meds, foods, and lifestyle that cures you completely.

Tonight I would settle for the stomach settling down enough I could get sleep.* That’s another belief—that with enough sleep, it will fix itself. Not perfectly, but enough.

*It's incredibly nice having another person around at times like these. Just in case anything happens, someone else will know, and that takes away a lot of the worry.

June 2014

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