January 31, 2012
Once again, I’ve managed to stop blogging entirely for months at a stretch (I’ve been on Twitter, but haven’t felt equal to a full length blog post). While I’m glad to report a vast improvement as of today, last semester was probably the most stressful of my life (to put that in perspective, the previous semester saw an evacuation from Egypt and a very painful two months of seminars to “replace” the priceless abroad experience we were supposed to be having). I did the bare minimum to keep afloat in class and at work, and spent the rest of my time sleeping or watching videos on Netflix, because that was all I could manage. I kept trying to push myself to get back up on my feet, but finally realized that I was only wearing myself out. I decided to pick one and only one thing to do every day. Often, that one thing was to take a walk. During the week it was to go to class. One day, I decided to go to the library. I got out of bed and put my clothes on, but before I got my shoes on I began to feel lightheaded and had to get back in bed. So that day my one thing became “get dressed”. That was the low point. In mid-December I made the very difficult decision to quit my Thesis, which cost me the “honors” part of my degree. That same week I begged a professor for some sort of extension on a research paper that was long overdue, and she gave me all the time I need. I could not have been more grateful for how supportive people were of me, when I felt I was letting them all down.
On November 11th I started Remicade. I had to get a bunch of blood tests and immunizations before I could start, but I finally got it. It helped a little, more with each dose, but it was by no means the miracle everybody said it should be. I had almost no energy, still, was getting very frequent headaches, and by December my appetite was gone (and when I did try to eat, I would get nauseous and stop). I was finally weighed in late December at a doctor’s appointment, and it turned out I had lost 8 pounds since September without realizing it. That day my nurse decided to double my Remicade dose, along with prescribing Omeprazole for the nausea and increasing my Lomotil. She brought up a dietitian to go through my diet with me and figure out how to get the most out of each meal (if I could only convince myself to eat once each day, I might as well get the most out of that one meal), and what to eat that wouldn’t make me feel so awful. Finally, things started to get better.
By New Year’s Day, I noticed that I had turned a page. I was running to the bathroom far less frequently, I could eat a little more, and my energy levels were higher. The headaches were going away. When I came back home after the holidays (a very needed 3 week vacation at my parents’ house) I felt well rested and ready to start getting back to my life. I didn’t dread the idea of going to work, for the first time in months. I can do more than one thing every day.
I’m only two weeks into my final semester at NYU, but already it’s going so much better than the last one. I am part time, only taking the minimum credits required to graduate, and I haven’t taken up any more hours at work. This means I am only in class three days a week and working two; they seem fond of putting me on for Sunday and Monday night shifts, so my week starts Sunday afternoon and lasts through Wednesday, leaving Thursday through Saturday entirely for me. I’ve been spending the time working on my resume and cover letter, and working on my (mercifully extended) research paper. I’m back to sewing again (my very kind sister has waited almost six months for me to get to work on her trench coat). I’m still sleeping and watching Netflix a good deal, but it doesn’t happen overnight.
I have an appointment with my doctor on Thursday, and two weeks after that is my next infusion. I hope that will help even more.
My best to all of you.
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 25, 2010
Wow, I was starting writing this thing with a nonchalant reference to “my trip,” and then realized that I haven’t told the internet about this yet! How could I forget?? So, before I get to the intended content of today’s post, let me say officially that I will be spending the first few months of 2011 in… Egypt! My spring semester this year is going to comprise various seminars on Egypt/archaeology/Egyptology, coloquial Arabic classes, an archaeological excavation in the oasis, and finally a month of travel to all the cool sites, well known and otherwise. This is going to take some doing as a Crohn’s patient. Filling scripts is not easy, nor is the mail reliable. I will be carrying in everything I need (plus some emergency antibiotics) for upwards of 3 months. Once I get there, staying healthy and minimally Crohnsie is going to be a matter of (luck and) eating very very carefully. We have a chef who cooks family style for everybody at the dig house, and I’ll be making very good friends with him, then remaining extremely vigilant about what I eat. I’ll also have a stash of my own food (I hear from a previous student with celiac that protein bars are great, and lots of people have liked having a jar of peanut butter) to fill in the gaps. Even so, all the first timers in Egypt get “Pharaoh’s Revenge,” which is 3 days of diarrhea, stomach cramps, and vomiting. Sweet. At least I won’t be the only one.
And now back to our regularly scheduled programming!
So this morning I went to see the doctor, to check in before I go back to school, and also to get everything squared away for my trip (there it is). I waited in the room for an hour and a half before he showed up. But once he did, I got hard copies of my scripts to take back to New York (a preemptive strike against the evil pharmacies of New York City) and some for Egypt so I can work out the kinks on the vacation override in advance. We also decided it’s likely that I am both lactose intolerant and sensitive to milk fat, but I don’t have time to get the test right now, so we’re just going to keep doing what works without the official test.
Oh, and he broke it to me that I’m going to need another colonoscopy next year. Awesome. I love that. Last time I had a colonoscopy was in ’06, and I spent the rest of the night hunched over on the couch with awful leg cramps that somehow resulted from the anesthesia (take home lesson: don’t let a man named Igor administer your morphine). That probably won’t happen again, but it still makes me nervous. Number 3, here I come.
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.