Random Update

I will get back to medicine once of these days. Heck, if things stay as good as they are, I might never have anything interesting (even to me) to say about my gut ever again.

The UC/Crohn's disease diet is not one I would have considered "colon friendly". It's mostly about limiting insoluble fiber (lettuce, raw veggies, skins, etc) and things that could irritate your gut (pineapple, alcohol, fried food). I'm not sure where watermelon, berries, and nuts fit into these catagories (they don't seem terribly high fiber, or irritating), but they're out too. In fact, it's not a diet I would have ever thought to recommend to a patient. Limit fruits and veggies to 4-5 servings/day. 8 servings of bread (and friends) (none of which should be whole wheat). 6oz of meat or more a day (except sausage which is out). Deserts "as desired". Fats "in moderation".

And I don't know how I got so sick so fast, really. Ok, I do know, it's because my usual trigger of the otherwise innocent-appearing URI then got followed by my other usual trigger of working too darn much. The two in combination seem like a particularly powerful provoking stimulus to my dysfunctional immune system. So, then I got sick, and got sicker because I had to work even more and more to make up for the time I missed while I was sick. That apparently made my immune system angry. And you wouldn't like my immune system when it's angry. :)

This time, my extra-intestinal stuff (especially the annoying tendonitis/arthritis stuff) was actually more disabling than the intestinal manifestations. I still have a collection of erythema nodosum, but only about 4-5. They appear to be hanging around, but are really only minimally annoying.

The thing is, I am a bit angry. I'm angry that I spent almost a year feeling terrible or on 40 mg of prednisone. I'm pretty annoyed that old gi doc, instead of trying some different stuff (the UC/CD diet, which isn't magic, but may have taken me a long time to come up with on my own; or the Lialda, which is the same drug as the asacol/mesalamine but in a different formulation where it more reliably delivers the drug to my colon), just kept doing the same thing every time, despite the fact that it didn't seem to be working. I got exposed to a ton of prednisone, and had all sorts of annoying side effects from it. Now my only real side effects are insomnia (really only noticeable if I take it later in the day) and a small amount of edema (just a bit of ankle edema and a general feeling of puffiness). That's on 10mg a day. I even might be able to get away with less after I've been better for a while. Heck, with the Lialda, I might be able to get off of it and stay off of it for long periods of time. (I've spent 8 of the past 10 months on 20-40mg prednisone/day, and it sucks. I hate the mood changes, irritability, insomnia, apetite increase, puffyness, bitchyness that I get with it). And even 10mg/day minimizes side effects to a tolerable level, and reduces risk to something tolerable.

I'm angry that old gi doc never talked about what it might be reasonable to expect. I figured I might always feel at least a little sick. New gi doc says that I should expect to be able to find a way to feel well most of the time, and that I may have to put up with some stuff (the erythema nodosum can be hard to eradicate, I'll probably always have to be a little bit careful with the diet; I'm thinking I may end up making some career decisions based on allowing myself to get enough rest to feel well most of the time); but that there's no reason for me to feel so bad for so long.

And most of all, I'm angry with myself that I let old gi doc get away with it for so long! I feel like I lost 8 months of my life to Inflammatory Bowel Disease. I'm angry that I spent 10 months of my life listening to old gi doc say, "It's just UC, it's not that big of a deal, you'll be fine. Everybody goes through periods where they have more disease activity..." But it is a big deal, and I wasn't fine, and it didn't take that long to fix. But at some point, you just got to say, "Here's where I am, how do I go forward?" I guess. The other thing? I'm a doctor. They gave me all sorts of "special considerations" because of that, but I would give up all of those perqs just to have had good care.

But as much as I am angry, I'm also hopeful. Maybe the UC/IBD/Whatever it is that I have can be controlled well enough that it really won't be a big deal, most of the time.


Anyway, thanks for listening!

And PS, I have no intent to rush into a colectomy, it was just good, in a way, to hear it talked about as not the worst thing ever, anyway. Because there's almost a 50% chance I'll end up with one no matter what I do, eventually, so it had been scaring me.