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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3 Responses to “Paradigm Shift”

  1. Ken Flowers Says:

    Thanks for posting again. I hope you reach symptom free.


  2. Hey GDP, glad to hear you were out seeing some of the world!

    You sound like you’ve got a new doctor who has your best interests in mind. Going on the biological modifiers is a big step, and might not be an easy choice for you, with a new doctor and everything, but if he is any good, he will listen and answer your questions the best he can. I’ll try too.

    Remicade.

    For me, it was awesome. Immediately awesome. (Although, I do get a dose of corticosteroids with my infusion, so that helped too!) I felt great. My fistulas started healing, flares and bowel movements became less frequent, my diet could become a bit more varied and I didn’t feel the crushing fatigue that I was unaware I had become used to. I had energy. That was a big thing. I didn’t realize just how “normal” being exhausted had become for me…

    But there are trade-offs: you will likely get colds and the flu waaaay more often than you ever did before, especially since you are in school and traveling back and forth between Boston and New York in a world filled with germs. This can really take a toll on you, like when you have flare-ups, particularly around exam time, when there is just that little bit more stress. I found I had absolutely no reserves when I got sick. I was at rock bottom. That was tough academically, so make sure you have some support from your university to do make-up exams or deferments if you have to.

    The other elephant in the room is sex.

    You’ll risk being more susceptible to STI’s and you’ll still have to consider your risk of pregnancy and birth-control options on Remicade, even though those risks may better than those of azathioprine, 6-mercaptopurine or methotrexate.

    That is a tough one, particularly if you meet someone who makes your stomach go all sqwooshy in a strictly non-Crohn’s related way… ;)

    But seriously, get a second opinion. You *know* being afraid and stressed isn’t going to help your Crohn’s. Do what ever you need to do to feel comfortable with your decision.

    (BTW, the placebo effect is not what you described. “Placebo” denotes that there is some goodness or pleasure that is affecting you. Unfortunately, you don’t seem to be getting anything like that. I think “psychosomatic” would best fit the analogy you were trying to make, thinking dark thoughts → makes you feel worse. So let’s not dwell too much on those, okay?)

    Happier thoughts!

    Maybe this → http://www.youtube.com/watch?v=w7fM16pHDB8 will help?


  3. You are a brave young woman. I am glad to have an update on your condition, and most pleased you new physician believes you can do much better than you have thought. As always, I’m holding you close, and believing for what might seem the impossible for you. Sending love. Aunty Marileigh


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