As comfortable as I am having this disease and talking about it, it’s still so embarrassing. Here’s an example: I spent the majority of my afternoon at work on Monday in the bathroom. The public bathroom. The public bathroom with just three, not-at-all-private stalls. The public bathroom with just three stalls at a company that is 90 percent female, and where everyone knows each other, and what shoes you’re wearing.
In other words, there is often no privacy, and that can make discomfort even worse. Hence why I stayed home from work on Tuesday. Crohn’s is not a quiet disease. I wish all bathroom stalls were soundproof.
If I say I need the bathroom, get the heck out. Don’t finish up your shower, don’t start tweezing your eyebrows and tell me you’ll “just be a sec.” Get out. Now. My turn.
I will talk to anyone about exactly what is happening in the bathroom — except Brian.
I’m pretty sure the majority of what he knows about my symptoms is from overhearing it in our tiny NYC apartment (that sucks for me, and probably for him as well) and from reading about it on the blog. And maybe he’s Googled it before or something. I don’t know. I don’t ask.
I’m open to discussing things quite graphically with my friends, my family and total strangers I meet on the streets of New York. But describe these things for Brian, who I live with? No thanks. Not in person. Maybe I’ll explain it all to him in an email sometime.
The worst part about a flare-up is the stomach stuff — but there are other side effects I forget about every single time. I always forget about the fevers (103.3 last night) and the night sweats. I forget about the crazy joint aching, which is especially evident in my upper back. I also forget about the fatigue, and am constantly wondering why I’m so tired and exhausted after doing things that are normally only semi-strenuous (you know, like dancing at a wedding or walking up the subway stairs).
I don’t know what it’s like not to have Crohn’s. Whenever people ask what it’s like living with Crohn’s, I’m stumped about how to answer. Because for the rest of you, what’s it like not having Crohn’s? What’s a normal stomachache like? Is it the same for both of us?
I’ve had this disease since I was 7, so this is normal for me. The flare-ups aren’t normal, but on the day-to-day, I’m just used to it all. I generally have more trouble digesting foods than “normal” people, and I can never just wake up and work out — I need ample bathroom time first. Beyond that, living with Crohn’s is just…fine I guess.
I am afraid Brian is going to break up with me because he’s sick of dealing with all this. I have literally been sick almost continuously since Brian and I started dating. I worry that one day he’s going to decide I’m too high maintenance and he’s not going to want to deal with it anymore.
Lately I have been feeling extremely guilty about being sick. When I get like this, I constantly worry about bringing people down — when I’m the girl who has to leave dinner early, or I’m the one not ordering a drink at the bar, or I’m cooped up in the church bathroom 30 seconds before I have to Maid of Honor down the aisle. I hate the thought that my sickness can in any way affect the people around me. It doesn’t seem fair to them.
I’m actually not stressed right now. I’m not excitingly busy, either. With the madness of spring behind me, I’m loving looking at my mostly-empty June calendar. I’m learning not to sweat the small stuff (even though all sweat is good sweat) and trying to be better about sanely handling the not-so-small stuff.
I have no intention of “beating” Crohn’s disease. I realize — and have to respect — that this is a chronic illness that doesn’t currently have a cure. As much as I’d like to bypass this flare-up and then announce to everyone that, “I beat Crohn’s,” I know that’s not a reality. More flare-ups may always happen.
I’m still figuring it out. Even though I’ve had this disease for 20 years now (whoa), there’s still so much for me to learn and I feel pretty clueless most times. In the past, I’ve had major success with Prednisone, but after the last time, when it made me into a madwoman, I don’t want to resort to that treatment again. I’m still getting Remicade every eight weeks — that’s where I’m hanging out now, in fact.
I would really love to be able to maintain this disease with a change in diet rather than being on so many drugs. Since my diagnosis, I’ve tried a ton of various drug cocktails, including Methotrexate, Lialda, Asacol, Prednisone, Remicade, 6 MP and more. They all have side effects and almost none of them have been tested for long-term effects. That scares me.
So right now, I’m juicing.
It’s only been 24 hours, but so far the juicing thing is interesting. My stomach doesn’t feel any better, but I did realize last night that despite being sick, I still felt I had more energy than normal. The goal is to fill my body with lots of nutrients, but unlike consuming raw vegetables and leafy stuff, this should be easier for my stomach to digest.
I don’t have a plan with the juicing. I’m not doing a “fast” or a “cleanse,” I’m just trying to give my body a break by not filling it with crap (for once). Breakfast yesterday was fruit juice of some sort, lunch was carrot and beet juice, dinner was a green juice and breakfast today was a juice made with pineapple, bananas and strawberries. I also think Brian has been sneaking spinach and kale into every single one of these.
I’m hoping that between the Remicade and the healthy stuff, I’ll be on the mend soon, and then I’ll figure out a plan with a new doctor. Doctors tend to want to pump me full of drugs, and I want to find a doctor who has an open mind instead of an over-active prescription pad.
I think that’s all.