Delicious? Off Limits.

November 25, 2009

Today I feel: not my best, but swinging back up from a bad few days.

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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.

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Superpower

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.

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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.

Details

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.

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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).

Lying about Poop

November 8, 2009

Today I feel: pretty alright. I haven’t had much of an appetite since I’ve been sick, so there hasn’t been much Crohn’s activity either.

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There’s one thing that has always been a problem for me, and that is the fact that there are no polite words to use in talking about Crohn’s disease. When your intestines get inflamed, the result that you feel the most directly is that your poop gets really nasty. And that’s difficult to say without grossing people out. My doctor uses words like “stool” and “bowel movement,” but that actually sounds much worse to me. One of the biggest blessings I have received recently was when, after I came back from the bathroom, a friend of mine looked me straight in the eye and said these exact words to me:

“How was your poop?”

How liberating! It made me instantly comfortable to have him cut right through the euphemism and ask me directly what was going on, and we went on to have a good conversation about what it was really like to live with Crohn’s. That’s exactly what I hope to bring to this blog: a frank and open discussion that makes no apologies for its own content. It’s uncomfortable enough to live with Crohn’s without stressing about what it’s okay to say.

In my opinion, one of the most difficult things about Crohn’s is the social stigma of it, because in our society, girls do not poop. People love to joke about poop, and my guy friends seldom poop without announcing their intention loudly and dramatically to the whole room. But having Crohn’s is like being ‘that guy’ who takes the joke way too far.

Not everyone in my life knows I have Crohn’s, just my good friends and my family. And even with them, I always feel uncomfortable saying so when I have to poop, especially for the third time in two hours. I usually lie and say “I have to pee.” I feel totally comfortable telling people I have Crohn’s, and having them know theoretically that I poop all the time, but I don’t usually like people knowing when it’s happening right now. Especially not when I’m using somebody else’s bathroom, because I’m always afraid they’re going to hear me! I know most people say they feel very uncomfortable pooping in public bathrooms, but that’s where I feel most comfortable because if it’s noisy, at least I’m anonymous. When it’s in my friends’ apartment, it was me, no question.

Even though I know my Crohn’s is in no way my fault (unless they find out sometime in the future that Crohn’s actually caused by nail-biting, in which case I guess it is my fault), I always feel like people will judge me for it. You poop all the time? Gross. I could hear that nasty poop you just took in my bathroom! No way are you ever coming back to my place! But honestly, this has never happened to me. And I don’t think it ever will unless I start hanging around real jerks, which, so far, I don’t. It’s my own insecurity, but it affects my life at least as much as the actual physical symptoms of Crohn’s do. But when I start really stressing about it, I like to remember my friend saying to me “how was your poop?” It reminds me that my friends are there for me, and love me in spite of my disease. And that makes it bearable.

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If you’re reading, give me a shout out! I’d love to hear from you and get a sense of what you want to see here.

Sorry this took so long to get up, I’ve been really sick lately, and the antibiotics I’m taking for it have been a big drain on my energy, which doesn’t make it easy to write well.