Paradigm Shift

September 19, 2011

Now that my weekend of self pity has come to an end, it’s time to get back on the blogging horse. I’ve been MIA since December for a number of reasons, chief among them that I was abroad in Egypt* and then traveling until the end of June. These travels are documented at One if by Camel, Two if by Carpet. One blog is really all this girl can handle. After that I’ll be honest and say it was just lack of motivation.

*A word to the wise: you will get Pharaoh’s revenge if you go to Egypt. This is not fun when you already have Crohn’s.

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When I finally got back to New York and tried to get my prescriptions transferred over here (always a hassle and a half) I found out that I had managed to go almost a year without seeing my GI and they couldn’t keep prescribing me immunosuppressants without checking in and getting some bloodwork. Oops. Unfortunate side effect of traveling for six months. I’ve been meaning to switch to an adult GI in New York for a while now but never quite gotten around to it because the pediatrics hadn’t bothered kicking me out and I could always schedule my appointments for school breaks.  But I’m not back in Boston until probably Thanksgiving, so this time I had to switch.

I had an appointment for the morning of September 14th, but apparently they switched the doctor’s schedule and didn’t bother to tell me, so when I showed up it was “your appointment is tomorrow, Miss Flowers.” What?? Really now. And to make it worse, they didn’t own up to having messed up. The girl just kept explaining to me how the schedule had been changed like I was too stupid to understand, and not like they had forgotten to call and ask if I could even make the new time. It happened could make it, and it was even a more convenient time for me, but I had already worked my whole day around the old time! I finally got the girl to tell me that the secretary was supposed to have called me but must have forgotten, which is fine. Annoying, but humans make mistakes, which I am happy to be understanding about. Just don’t pretend you were totally in the right.

When I finally got to see the doctor I was much happier. The reception was a disaster, but he (and his two associates I spoke to before him, I can only assume they were junior staff or something) seemed more than competent. I was really happy that they listened to my current case, said “you shouldn’t be living like that” and decided to shoot for symptom free. My old doctor never seemed to see symptom free as a goal. He wanted to make it better, but he was happy to settle for just a little better. The new guy wants it to be totally better.

But with that came the realization that my case is worse than I thought. I have an average of 7 bowel movements per day, at least one of which almost always wakes me up in the middle of the night. My appetite is patchy, and I never feel like I’ve gotten the proper nutrition out of the food I eat. I feel tired all the time. I have flares every couple of months but even in between I never feel really good. My old doctor never seemed too concerned, and since Crohn’s isn’t life-threatening, I just resigned myself to having to deal with this. I thought of it as being mild, compared to people with “real diseases”, and I really thought this was what well controlled Crohn’s was supposed to be like. I have problems, but everybody poops. I just do it more and it sucks harder. The new doctor told me he’d consider my case moderate to severe and doesn’t think it’s well controlled at all. He doesn’t accept that I should “just deal with this” like I’ve been doing.

And, higher expectations for where I can get to means more aggressive treatment, which scares me a lot. There’s a lot that I didn’t know (possibly because they don’t talk as much about the scary stuff in pediatrics?) about other risks as the disease goes on (I’m coming up on the 12 year mark now). Fistulas, cysts, colon cancer, all that stuff. I knew I needed a colonoscopy soon, but apparently now I’ll need one every 1-2 years instead of every 5. And they have to biopsy to check for early stage colon cancer.

And apparently, I’ve basically taken everything you can take before it becomes time to move on to Remicade or Humira. I have been so against these ever since I heard about them a few years back because that’s serious business, and my Crohn’s is really not that huge a deal. I don’t have the kind of disease where you have to go in to the hospital just to get your routine medications (or yes, I know you can inject Remicade at home, but I don’t like that either). Apparently though, I do have that kind of disease (unless bumping up my 6-MP dose is enough on its own, which the doctors don’t seem super hopeful for) so now I have to start seriously considering the possibility of going on the serious business drugs.

But first is the colonoscopy, so they can see exactly what’s going on, what the level of inflammation is, etc. October 11, 1pm. My dear mother is coming down to the city to make sure I’m okay afterwards (last time my legs cramped up for the whole evening, apparently a reaction to the anesthesia), and I’ve been forbidden by my roommate to go to class the next day.

All this has been really hard for me to hear, and consequently I spent the entire weekend, as I said, in one big pity party. I’ve been sewing like a madwoman to take the edge off, but it’s been really rough. As soon as the doctor told me I’m not doing as well as I thought I started feeling like a sick person. Nothing has changed other than my perception of my disease, but I feel physically much worse. This must be what they mean when they talk about the placebo effect. Your body physically manifests what your brain thinks is going on. So now I feel awful. Working is a huge burden, and I’m more tired than ever. I’ve been trying to take some time to myself to adjust and heal, or whatever, but it’s hard when I have so many things I’m supposed to be doing, including social interactions, which are just stressing me out at this point. I just wish I could take a week off and get it together.

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Super long winded post today, but there was a lot to say. A couple questions before I leave you.

Has anybody taken Remicade or Humira, or know about them, who can tell me about it? Should I be worried? Are there side effects, a rough adjustment period, etc.? Does it really work as well as the doctor says it will? Should I get a second opinion before starting this?

Anybody have great ideas for “low residue” meals I can make for the week before my colonoscopy? Or good clear liquids for the day before (I know it’s impossible to make a meal out of this)?

I hope all of you are doing well.

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I hate pharmacies. The bureaucratic rules that govern them are completely misdirected towards making sure people don’t have access to drugs they don’t need (even though what drugs somebody buys is nobody’s business but their own and their doctor’s), rather than towards making sure nobody who really needs them will have to go without. What pharmacies don’t seem to understand is that their customers 99% of the time are depending on the drugs they get in order to sustain some part of their lives. Most of us suffer some significant hardship if we go for a couple of days without our drugs, and the pharmacy just shrugs their shoulders and tells us to suck it up. They need to start taking personal responsibility for the well being of their customers. I’m sorry you have a hard job. I’m sorry everybody is always mad at you. But you must understand that there is something more at stake here than whether or not we get to have our favorite cookies when we want them, and the pharmacy making us jump through hoops to get what we need makes us a little testy and you should be a little more understaning. If I don’t get my drugs, all of them, on time, every day, I spend maybe an hour more of my day running to the bathroom rather than doing the things I’m supposed to be doing with my life, like passing my finals and doing my job. And of course, if I have to get up 3 times in the middle of the night, that leaves not only less time but significantly less energy for me to do these things. That’s what is at stake here, buddy, so I don’t need your contempt when I ask you when I can expect you to get me my drugs.

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It’s been 2 days without my suppository. Obviously, I’m not feeling too good. And to top it all off, I’m coming down with something.

Not Headrush

March 25, 2010

Today I feel: bad. And I will tell you why.

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So this afternoon I was at my desk doing today’s Latin translation, grazing on various things as “lunch”. I was having one of those days where even if you’ve eaten enough to be more or less full, you still don’t feel nutritionally satisfied (I’m particularly sensitive to this just because I have a pretty week constitution, and it doesn’t take much to physically conquer my body). Anyway I started to feel very mildly nausseus, and then the headache began. Awesome, I’m trying to study. So I had an ibuprofen and sat back down to try to work through it. No such luck. A minute or so later I experienced something I have no name for, but it could have been named headrush if we didn’t already use headrush to describe a different thing. Basically this feeling of numbness (not real numbness, but abstract numbness) and ear ringing crept up my head from my neck and chin up to my forehead, and stuck there for only a couple of seconds. At that point I decided to lie down rather than try to go to Latin.

Took a 3 hour nap, the headache and nausea are gone, the headrush-thing hasn’t come back, but my Crohn’s has been acting up. Generally my Crohn’s has a pretty quick response to any stress in my life, especially illness or nervousness. I’m hoping this was a passing spell, and not a confluence of symptoms that means bad news. If it starts coming back, I’ll get me down to the health center, but so far the nap remedy seems to have done the trick. Now I just have to deal with Crohn’s symptoms. :(

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Update: My mom solved it! I was dehydrated (lots of food, no glass of water!), and had a near fainting spell. I don’t know why I didn’t put that together, especially since my first instinct after the “headrush” was to grab a glass of water and lay down.

Blood

March 12, 2010

So last night I was not doing so great, and I can’t think of a reason why. Urgency, frequency, the works. And then I woke up this morning to blood. Not the extent I used to get as a kid, but more than I’ve had in a while. Plus, last week I was getting some cramps, nowhere near the right time to be getting them. I’m thinking that’s more likely related to this.

Now aren’t we glad I emailed the doc? Going in on Tuesday.

This was going to be a mini-post, but as usual I wax verbose. Apparently I cannot get anything said in just a couple of sentences. (except for that)

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I’ve been sick for the past week or so. Sorta. You know that “I’m about to get sick in like a day and a half” feeling? I had that for a week. Occasionally I’m able to put off getting sick by sheer force of will, and I just didn’t have the time for it last week. Then the weekend rolled around and I got a chance to sit down for a moment, and on came the sickness full force. Which was bad news for my throat and for my digestion. So little fun, I can’t even tell you. Anyway yesterday morning I woke up miraculously cured and now I’m all better! Mostly, you know how it is. But this time I got better significantly faster than I normally do. At 3:30pm I was too sick to get up and go to class, and at 8:30 the next morning I felt fine, which is especially odd for me because I usually feel worse in the mornings and get better as the day progresses. Anyway I’m thrilled to be back on my feet.

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Today is grocery day, and if you’re keeping up with my adventures in alternative milks, you know what that means: rice milk! While I was sick I wasn’t drinking any milk of any sort so as not to stuff up my nose (although I’m not sure, do soy/almond/rice milks cause congestion as well or is that just cow’s milk?), so I still have a good amount of almond milk to use up before I get started on the rice milk. I’m thinking Annie’s Mac and Cheese for lunch today, made with almond milk! I honestly have no idea how the almond taste is going to work with the rest of it, but I don’t see why it shouldn’t be delicious. The girl at Trader Joe’s told me almond milk is great for cooking, and she works at Trader Joe’s so she’s gotta know her stuff! I feel sort of silly for having Mac and Cheese with my almond milk, but so far cheese has been just fine for me, so long as it’s in small quantities. And there probably isn’t much actual cheese in there anyhow.