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.
July 4, 2010
This morning was awful. It was like a horrible flashback to my unmedicated childhood. Way back in the day when parachute pants were apparently cool, my life seemed like one continuous loop of running to the bathroom, sitting there for 15 minutes with nothing to show for it, leaving in defeat, rushing back 5 minutes later, and so on. This morning was back to that, and of course I was an hour away from home and shopping, so bathrooms were less than predictable. The worst part, though, was not the fear of not making it in time, but the sick feeling of my gut in the interim. It’s one of the worst feelings I know; it always reminds me that I’m not just a person who has to poop all the time, I actually have a disease. And I seriously don’t like that. (For this same reason I hate having to cut out milk products.)
If anything, though, this morning reminds me of how well my meds work. It’s been ages since I’ve had a morning like this, and it probably only lasted an hour (3 bathroom stops and 2 stores later). I know tons of people think it’s better not to take drugs and just let your body take care of itself, but I can only give these people a mildly tolerant laugh. No need to put my body through that.
November 25, 2009
Today I feel: not my best, but swinging back up from a bad few days.
Before I was diagnosed with Crohn’s, the doctors thought I was lactose intolerant, and they actually diagnosed me as such for a while. I believe this was somewhat after I was on an “ice cream diet” to gain back the six pounds I lost since becoming sick (I stopped wanting to eat once it became clear to me that eating led to stomach pain). Anyway, I am not lactose intolerant, and thank god for that because milk is my number one comfort food. Even so, really creamy things do tend to exacerbate my Crohn’s, as do really greasy things, and anything that can generally be described as “rich”. Which is nice, because that’s most of the really good stuff.
When I started out there were a lot of foods that were absolutely off limits for me, partly because my disease was in no way under control yet, and partly because I was ten. At nearly twenty, I still don’t always make the absolute ideal food choices (but who does, really?) so the restriction was probably good. At the beginning it was no nuts or popcorn of course, but also no apples, grapes, hotdogs, basically nothing with a skin on it. Back in the day I remember my mother peeling those tiny little breakfast sausages for me on Christmas, and my sister in the back of the car peeling me some grapes or de-kerneling popcorn. It was really sweet, but thankfully now I’ve been given the go-ahead for skin. The doc says I can cheat with popcorn (bagged is fine, the kernels aren’t as thick as movie-theater popcorn) and nuts as long as I’m careful, which translates to chewing them to a pulp and not eating too many at once, which is excellent because I love pistachios.
The doctor doesn’t have as much to say about my rich foods, though, probably because it’s an inconvenience thing more than an emergency room complete with stomach pumping kind of event. Unlike Boston’s beloved Mayor Menino, I have never been rushed to the hospital for eating Cracker Jacks and Fenway Franks, and in this I count myself lucky. As long as I follow the rules, I should be fine, right?
Well, not really. Donuts generally lead to me running to a bathroom multiple times within minutes, as does ice cream and pizza. Honestly, I am not a fan of this. But it’s a lot harder for me to remember not to eat these sorts of food than it is to not get popcorn at a movie, since they’re not technically off-limits, they just aren’t the best idea.
I haven’t been eating much ice cream lately- it doesn’t occur to me to eat it very often, and I’ve been trying to eat somewhat healthier. Generally, this has been really good for me in all aspects of life. I feel better, I have more energy, and my Crohn’s is a little easier to manage. But when I came home from college this past weekend, my sister took me out to ice cream. That was really sweet of her, and the ice cream was delicious, as usual. But after a little while I could feel it in my gut. After another ice cream outing two days later with the same result I put two and two together. My body isn’t used to having such rich food in it anymore, and so it reacts worse to ice cream now than it would have if I ate it all the time.
I don’t think the answer to this is to eat ice cream all the time, because it still isn’t good for my belly in any way, it just doesn’t shock my body as much when it feels bad that way all the time. And I’m not willing to totally give up rich, delicious food, especially not this close to the holidays. I think the answer is all things in moderation, and definitely not before I get on a bus. If I’m going to be at my house for a while, it’s okay to have a little of that ice cream or whatever else. Key word being a little.
I think I’m getting better at making good food decisions for my health, Crohn’s and otherwise. Tonight my family is celebrating my 20th birthday with dinner out, since I’ll be at school on my actual birthday, but I decided to go to sushi instead of Chinese. Seaweed, vegetables, and rice (I don’t eat fish)? No problem. At 20, I think it’s good to finally be able to choose Cheerios over a donut and soup over pizza.
November 24, 2009
In the past few days my Crohn’s has been a roller coaster. It was great for a while, not so much urgency, but then came some blood. But then, I went about 8 hours without seeing the inside of a bathroom (which never ever happens to me, usually not even when I’m supposed to be sleeping), 5 of which I spent on a bus. Since I got off the bus it’s been a different story. Urgency, repetition, no formation whatsoever, but luckily no more blood after that one time.
It’s stress. Midterms, sickness, essays, preparing to come home for Thanksgiving while trying to pull together Christmas gifts to take home with me- and they all band together to deprive me of proper sleep. Stress ensues and there goes my Crohn’s.
Same thing for nerves on a smaller scale. When I was a kid, I remember having fake Crohn’s emergencies (not like I was faking it, like my insides were faking me out) whenever I was nervous about something. I had to run out of the Splash Mountain line at least twice or three times in sixth grade because I was so scared to ride, and then I would feel like I desperately needed to get to a bathroom. Of course as often happened back then, when I got there, nothing came of it. (Happy ending- I eventually managed to get on that ride, and I loved it!)
Looking back, I’m realizing that since then, I’ve gotten great at this. I went to see 2012 with my Dad tonight, and had to go to the bathroom literally three times during the movie. But I managed to catch it before the “oh my god run!” stage and still time my exits so I didn’t miss anything monumental. It does, of course, help that my Dad pays enough attention during movies to give me a full recap of what I missed when I get back.
The other thing I’ve gotten awesome at is finding bathrooms. Has anybody else noticed this? Not only do I scan a location for the nearest bathroom as soon as I get somewhere, but most of the time I know exactly where to look, if the building plan is at all intelligent. My family routinely asks me where the bathroom is if they need it, even if I haven’t been there yet either, and I can almost always tell them. It’s sort of like a superpower- a sad, sad superpower.
On an unrelated side-note, “how was your poop?” has now come into my family’s arsenal of phrases. My Dad has asked it of me at least three times since I’ve been home, and it still makes me feel better. It doesn’t seem like it would, but it does. I’ve always known my Dad didn’t judge me for pooping all the time, but it’s nice to hear it out loud. Though I would not particularly appreciate hearing it at Thanksgiving dinner.
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).