But first, some Crohn’s talk. Feel free to fast forward as desired.
In theory, I had the perfect Friday night.
I went out to dinner with coworkers at The Smith, one of my favorites, and then went to New York City Ballet’s production of The Sleeping Beauty. The food was good and the ballet was amazing. Lincoln Center is one of my Top 5 Favorite Places in NYC, so get me there and I’m a pretty happy Ali.
But in the reality that is “My Life With Crohn’s Disease,” the night was more painful than perfect.
I don’t know what happened. All week I had prided my body on getting stronger, feeling better and moving the latest flare-up into the past. Things were feeling good! I was back on board public transportation, I was getting through the workday fine and, as I’ve obsessed sufficiently, I was back to running.
I had planned all my meals for the week, I was getting ample sleep (or as close to “ample” as I think I’ll ever get) and I even went to a yoga class.
It was just the usual “Holy hell I’m in so much pain right now and I don’t care how rude it is to leave in the middle of Aurora’s Rose Adagio, I need to use the bathroom now.”
I had to do the “bathroom bolt” (well now, isn’t that clever?) multiple times during dinner — because that’s not at all embarrassing when you’re out with people you work with — and as soon as I walked into Lincoln Center.
Then, during the 2.5 hour ballet, I sat there in pain and discomfort, thinking less about the pirouetting onstage and more about when I could make my frantic exit. (The fact that press seats are always aisle seats is a constant blessing in my theater-going life.)
I didn’t sleep well Friday night because the Crohnsing continued, and Saturday morning wasn’t so good either.
Now, it’s Monday (you’re welcome for the reminder), and I’m finally feeling like I’m back on the “time to get healthy” track again. So maybe it was just something I ate. Maybe it was Crohn’s just popping back in for a casual reminder that it’s a chronic thing that won’t actually ever just leave me alone.
You fellow Crohn’s/colitis/IBD/IBS folks know what it’s all about. You know the embarrassment, the pain, the general inability to plan your life.
I can’t give you advice on which medications to take or which foods to eliminate. And I swear to Remicade, if you leave a comment about how I should really eliminate gluten or go Paleo, I’m banning you from the comments. Love you.
As comforting as it can be to talk to other people who share this disease, it can also feel unnerving sometimes. There are people who are my age, leading similar lifestyles, who can eat all the corn in the world and wash it down with a bucket of fried chicken and three cocktails. There are people with Crohn’s disease who can run incredibly high mileage and never feel fatigued. And, on the flip side of course, there are people with Crohn’s disease who can’t get out of bed (or the bathroom) at all. They are tired, their joints ache, everything is just really bad.
I fall somewhere in the middle of the spectrum. Even though sometimes I feel like I’m dying (really), my doctor has diagnosed my case as “mild to moderate,” though upon my hospital visit and all that close-up viewing of my insides, he deduced that the disease is “severe in the sigmoid colon.”
My point — I really was getting to one — is that I have no medical advice to offer you. (And if I did offer you medical advice, why would you take it? I’m not a doctor. Be smart. Don’t take medical advice from people like me.) This disease is so personal and each lifestyle, each method of treatment, is so different.
This go-around, my flare-up was treated by a combination of antibiotics and Remicade, and while I’m sure they eventually kicked in and are getting this disease to calm down for the time being, ultimately what made this flare easier than ones in the past is that my mental training was spot-on.
At times I think this disease is all in my head.
I know it’s not. I have proof that it’s in other places than my head…
But when I think about being sick — when I think obsessively about where the closest bathroom is and whether I’ll have time to use it before my next meeting or appointment — I panic. Being in transit is the absolute worst part of being sick. If I’m sitting in the office, I’m mostly OK. When I’m at home, I’m comfortable and pretty much fine. When I have to move around, though, be it walking to work or taking the subway, I just completely freak out. Every time, whether I’m hustling across the street or across town.
So as much as I can give credit where it’s due to Remicade and other drugs, I’ve also gotta give it up for Bejeweled Blitz.
Because my best tip for dealing with a Crohn’s disease flare-up is to stay mentally distracted.
It’s hard. It really is.
But the less I think about having to run for the bathroom, the less I actually have to do it.
This works when I’m on the subway. I play countless games of Bejeweled. Many high scores have been accumulated while on the Downtown 6. I just focus on the game and lining up all those little tiles, and I’m not so focused on the churning in my stomach.
It works when I’m running, too. If I’m out and I’m thinking about whether I’m closer to the tennis court bathrooms or the Great Lawn bathrooms, I’m inevitably going to need to sprint to one of them in pain. This is a pretty regular occurrence, unfortunately.
…and think about anything but my disease, I can cruise along for a while, and usually I can tackle a few miles without even realizing that I didn’t need to stop.
I know it sounds easy and trite and maybe even a little stupid and useless, but I assure you, more than any diet or meditation practice, just training myself not to think about being sick has made me feel less sick. Give it a shot.
ANYTHING TO ADD? Another thing that works for me is sitting down whenever I can. If I’m flaring and I see an open seat on the subway, I will fight you for it. Unless you are an old person. Then you can have it. I’ll just sit on your lap. No problem.