I love that you think I'm all brave and stalwart about using the medical system. That's not really me -- I'm a big avoider, too, although lately with better health insurance and now my new friend Crohn's Disease (the latest diagnosis) I'm navigating the system better. I seek out nurse practitioners, not MDs, and base my doctor choices on convenient location, if I don't have a recommendation or a particular person in mind. I was getting pretty fabulous dental care for a while there, but after a few visits my hygienist struck me as bossy and too talkative, and so I haven't been back for a few years because I haven't figured out how to stay at the same practice but request a different hygienist. It's more on this theme of passive barriers, and how certain small difficulties can make an important task into something that gets indefinitely postponed.
With passive barrier type situations I have the most success if I way overreact -- I'm either an avoider entirely or I take on a huge project, like The Year of The Definitive Cure.
Anyway, now we have a different name for what's going on in my intestines, but I don't know much more. I'm afraid you've scared our wise and thoughtful readers away from sending cures, strategies, hypotheses, kooky ideas, studies, and dietary suggestions our way -- please, friends, I want to hear what occurs to you, so don't imagine that the inbox has been flooded with better ideas. Below the fold, I'll tell you what I know, which is very, very, very little.
1) Crohn's disease and ulcerative colitis are different names for essentially the same condition: an inflammation in the intestines with an unknown cause. The reason what I've got is called Crohn's is because the location of the inflammation is up near the small intestine, plus at the bottom, near the exit.
2) These are autoimmune conditions -- no bad bugs are causing this, it's just my body acting up.
3) Nobody really knows much about autoimmune conditions -- they're super mysterious and frustrating. Why do I have this? What's the cause? How do I make it go away? Answers are unsatisfying.
4) The focus with these conditions seems to be on managing the symptoms. This makes sense, I guess, since that's all we've got -- we don't understand the cause, really, and there are no invading organisms to fight.
5) There's no "cure" (YET) but patients go through periods of 'remission' and recurring flare ups.
6) It can be really bad for some patients -- like, cut out your intestines and poop in a bag bad. Hospitalization bad. Debilitating pain and discomfort and uncontrollable diarrhea bad. Wacky effects on other organs, skin, weight loss, etc. Or it can be mild, like I have, where I only see evidence that something's wrong when I poop, and there's blood and mucus where I would prefer there were only brown.
7) Treatment approaches range from steroids (pills or suppositories) to something that tackles TNFs (which I forget what they are) to hookworms to surgical removal of the inflamed sections. Gluten free diet might help, too. This is the part I'm trying to figure out now.
8) Next appointment for me is on April 20th. I plan to read everything I can get my hands on before then. If you see something, please send it.
PS. Apropos of nothing -- I don't think you should get a dog. I can't figure out why I think that, because as a rule, I think everyone should get a dog. But I don't think it makes sense for you. You're about to have a baby, and you're already kind of living two places, and you like to bike off and have adventures. Doesn't seem like a dog fits.