September 28, 2011
Since I last posted, I’ve not been feeling my best. Despite everyone’s best efforts to lift my spirits* etc., etc., the fact is that I seem to have stressed myself into a real live flare, and it isn’t going away just because I’m starting to process this new information. It makes itself worse, because I’m too wiped out to do any of the things I need to do (never mind the things I want to do, haven’t been to the gym since August), but then I have to do them anyway which just fatigues and stresses me more, so that the next day I want to get up and go to class and work even less.
*A big shout out to my roommate, my parents, my sister, my manager, and very good friend from home. Thanks so much for your support, you guys make it so much easier.
One quick solution to this is that I’ve cut my hours at work to only two shifts a week. Besides the obvious “more time to rest,” I also get a few days in between shifts, so I don’t have to deal with the stress of many days in a row where I feel like I just left when I have to come back. This is helping. I now have far fewer days where I don’t get to come home from dawn until long after dusk (like normal), and this is really much nicer.
Even so it hasn’t fixed everything and I’m still feeling pretty bad. Yesterday I went to my voice lesson and explained what was going on to my teacher, who really got how much this was affecting me and decided to tone down the intensity of what I’m working on. The awful thing is how offended I got when she told me she had an easier song for me, with less ornamentation, that wouldn’t be as difficult to learn and sing. How dare she think I couldn’t do the harder song! But she’s right. I need a break. I want to sing, but it isn’t helping to push myself so hard. My pride and drive to be good at simply everything are normally what push me to keep improving myself, but now they’re working against me. I hate to say “I can’t,” but right now I can’t do all the things I want to do. I can’t read all the Greek and learn all the history and work out every day and teach myself to sight read right now.
So I’m going to try to be good to myself. Do what I have to to stay afloat in school and at work without sacrificing my health. I keep telling myself that once the colonoscopy is done, once I get my meds sorted out, it will all be better and I’ll be able to be myself and do everything again. And I really really hope that turns out to be true.
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.
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.
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.
August 30, 2010
Blogging to fill the time between eating lunch and leaving my appartment. Seriously, if I left right now it would be a half hour (spent walking) before I was at a bathroom, and I would start to need one about 10 minutes in. So I wait at home, let it all sink in, then bathroom, then errands.
Saturday was a driving day. At least four hours in the car, broken up variously, and that takes some intense planning for a Crohnsite. I wanted to minimize eating while actually driving, which meant that before we left I had to eat a pretty substantial, protein filled lunch without going to the greasy or otherwise problematic foods. I ended up going with meatballs, which worked out well.
We had reservations at a great place in Stamford for dinner that night, and after an excellent meal, out came the desert menu. There was an almond cream tart with raspberries, and with very little hope I asked the waitress if the almond cream portion was cream with almond flavoring or if it was actually made from almond milk. And since I’m blogging about the experience you can probably guess that it was made with almond milk! Almond cookie topped with a thick almond cream and whole raspberries, topped with a mint garnish and a dark chocolate drizzle. (I wanted to paste in the menu description but it isn’t on the online menu.) You cannot imagine how incredible this was. I was in heaven.
And now I’m back at school, armed with physical copies of my scripts so the pharmacies don’t give me a hard time, ready to take on the world. Or probably just my next semester of classes at this point. Classes now, world later.
April 11, 2010
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.
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.
March 18, 2010
Went to see the doc on Tuesday, as usual he was running 45 minutes late. So I walked around Boston; it was lovely out.
We figured out what was causing the bleeding: it’s a little cut, and seems to be healing on its own anyway, but we want to give it a little help and make sure it doesn’t get re-irritated or infected. So I started on Cipro (apparently the go-to antibiotic for those of us who are allergic to penicillin, and also for people who have been exposed to anthrax) Tuesday night, to continue for at least 3 weeks, or however long after that the doc deems necessary. The one issue with it is, it’s going to prevent me from having a lactose test, since you can’t have antibiotics within 2 weeks. :( I’ll get one of those when I come home for summer; hopefully I’ll be off the antibiotics by then.
The doc also gave the OK for me to go abroad next Spring! I want to go on a dig in Egypt, but realized that at least some of the time there will be a scarcity of bathrooms, and that I might have difficulties getting my scripts filled. But, my doc has a packet of info for traveling with Crohn’s, will send me with 3 months worth of all my scripts plus one for the Cipro just in case, and knows a couple of doctors in Cairo who might not know a lot about Crohn’s, but have my doc’s phone number which is just about as good. Now I just have to get into the program.
Also, getting blood drawn never gets better. Easier to deal with, yes. But deep down, I think we all turn into little kids and want to cry about it. More on this later, but I’m exhausted (nice weather really takes it out of you) and I think I’ll go to bed now.
January 10, 2010
Wow, I took a longer hiatus than I expected to. Sorry about that! I hope you all had a wonderful holiday season, I’m always glad to spend Christmas and New Year’s with my family. But now it’s time to get back to the proverbial grind.
Today I feel: middling, for me. No major problems, just the day to day annoyance of having to deal with Crohn’s (my thought as I wake up every morning and have to get myself to the bathroom first thing: “It’s still here? Oh come on.”).
Just a few days after my last post I got a new job, which has been incredible so far. I worked almost non-stop my last week in the city, including an overnight shift (and all this starting mere hours after my finals ended). It’s great to be getting paid again, and I’m so glad that I got a good job rather than having to take whatever I could get, but they did manage to run me ragged in that one week. I had one 12 hour overnight shift that threw me completely off my sleep schedule, which I found out is disastrous when you take your meds “when you wake up”. I know I missed at least 1 day of meds that week, maybe 2. Which isn’t great when you then have to continue working constantly. On Friday night I managed to get myself into a spot where I had to run off to the bathroom 3 times in a half hour. That was extremely unpleasant. Apparently I was really sick the whole time (said a nurse I saw a few days later) but through sheer willpower I managed to ward it off until the morning my bus left to take me back home. So of course I spent Christmas with a bad cold, which, again, is not terribly much fun and not so good for Crohn’s.
Lesson learned: when you’re most stressed out is the time when you tend to neglect the things you need to keep you healthy, like taking meds on time and eating right. But it’s also the time when your body is most susceptible to bad things happening, so you need to take extra care so you don’t pile on one more stress!
This vacation has confirmed for me that I cannot eat ice cream anymore. I started craving it and went into the ice cream shop where my sister works, and predictably was tethered to the bathroom all night. I have a theory that I may be able to get away with frozen yogurt to feed the occasional desire for ice cream, because of the different source of the “cream” part, but I haven’t experimented enough with it to say for sure yet. Does anybody know if frozen yogurt is at all better than ice cream in terms of not exacerbating the digestive system?
November 12, 2009
So, I realize that thus far I haven’t said much about the particulars of my disease, which seems pretty relevant. So far, you know that I was diagnosed 10 years ago, and that I’m doing okay. Good starting point, but let’s be a little more specific.
I am currently in a really good spot in terms of symptoms relative to how it’s been in the past, but I still have plenty of symptoms on a daily basis, and I end up having to poop about 6 or 7 times in a day. There are a couple things I’ve gotten used to with Crohn’s that are still not normal, but are par for the course for me, even in good periods like the one I’m in now. I always wake up 2 or 3 times a night to poop, and I have to use the bathroom as soon as I wake up in the morning, usually twice (I don’t know why this happens more often in the morning, but there you are). Having just flushed the toilet does not give me any sense of being “done” for a while; I could easily be right back there 2 minutes from now for no apparent reason. That being said, I no longer (and this was a huge part of my Crohn’s years ago) have many instances of being fine one moment and then the next being in an absolute crisis and needing to get to a bathroom now.
I’m on a bunch of medications, but not enough I believe to constitute an actual “cocktail”. Right now I have 6-MP, an immune suppressant which keeps inflammation down, Lamotil, an anti-diarrheal which slows intestinal movement, Culturelle, an over the counter probiotic that promotes good bacteria growth, Anucort, a steroid to combat inflammation, in suppository form, along with a Multivitamin and Iron and Calcium supplements.
Fun fact: I used to have ½ cup of yogurt every morning “prescribed” to get the same effect as Culturelle.
That’s all I’ve got for now, but if you have any questions, please let me know; As always, I’d love to hear from you.
Exciting news! I’m applying to be a Youth Leader for the CCFA’s National Youth Leadership Council (NYLC). If I get it, I’ll get to be part of a lot of Crohn’s awareness and fundraising events locally and nationally, which would be the coolest experience! I’ll know in late December if I’m accepted, and y’all will be the first to know (after me, of course).