A few things you should know about Crohn’s disease
Look, I’m as tired of writing about sick as you are likely to read about it.
This grammar felt wrong. My brain hurts. I’m so sorry.
Let me take this time to show you how huge Tyler is:
Tyler, slow down growing! You are a monster!
I gave him this outfit. It has a monkey face on the bum.
Anyway. I don’t want to write about this stupid Crohn’s stuff anymore, but unfortunately it’s a big ol ‘part of my life at the moment, so let’s talk it out a bit.
When people hear that I have Crohn’s disease, they tend to make several assumptions:
That I go to the bathroom a lot. (True.)
That I have “bad stomach ache”. (True, but let’s change “bad” to “F-ing terrible.)
That I have “Chron Disease”. (So wrong. Please stop spelling the name of this disease, especially if you have it!)
But since that doesn’t sum it all up, I want to help you by sharing a few more of my own findings with you.
And remember, I’m not a doctor. The only medical degree I am worthy of is a Ph.D in frozen yogurt science, and I don’t even know where to go to major in this area. Right on 16 handles? Or is there a higher power I should be looking for?
THIS IS MY HAPPY PLACE.
Everything I write about is based on my experience, my advice from doctors, and my research from various sources. Take everything with an easily digestible grain of salt.
You may have it – but you probably don’t. So you had to go to the bathroom after a weekend binge party? Raw vegetables don’t match your stomach and salad is your enemy? It’s okay, and it sucks. Suck all digestive problems.
But just because you had to go to the bathroom once or twice urgently doesn’t mean that you “definitely have Crohns”. If you really think you can have an digestive illness, please go to the doctor. Get a colonoscopy. Have some barium. Do you have a CT scan or an upper or lower GI. Do all of these things and then we can compare symptoms. Because I’m sorry, I can sympathize, but at some point you compare your cramps to Crohns, OMG is so frustrating.
I am not sick because I like to run. I always welcome feedback and advice, I really do. But if anyone else tries to convince me that I am “sick because I worked” I will go on and hit something … or someone. So watch out.
Yes, I like to work. Yes, I do it a lot, and yes, I am aware of it. No, I’m not an idiot. (Really, it’s not me. I’m just playing one on the Internet.) Crohn’s disease and exercise, after every doctor I’ve ever seen, and all the current research I’ve read are not intricately intertwined.
Obviously if I tore myself up my body won’t recover, and with Crohn on top of it will tear me apart. That, we can probably all agree, is a fact. But I don’t have any flare right now because of every exercise I’ve done.
What you read on my blog is not my whole life – just because I say I went to a Chisel class doesn’t mean I hit balls hard on the wall with super heavy weights to get on top of things jump that all parkour style. I know when to weaken it and I know what exercises my body can do (sit on a spin bike and just take it) and I can’t do it (fast running, boo).
In addition, every day – every hour, every minute – is different during a flare. On Sunday I felt okay enough to go for a run. Yesterday and today I couldn’t even think about putting on sneakers or a sports bra. It’s constantly changing and totally unpredictable, so I don’t try to plan workouts because I know they can’t happen and I don’t want to get discouraged.
Ultimately, exercise makes me feel good and most of the times it’s the one thing that keeps my mind from the fact that I’m flickering. So please stop telling me to stop sweating. I did absolutely nothing yesterday, except parking my ass on the couch and leaving a serious butt mark. I wanted to shoot, but I didn’t. Instead, I drank juice all day and was as lazy as possible. I haven’t even made a sick day to-do list. Look at me, everyone chill and stuff.
Lunch was turnip juice. Surprisingly tasty, and it suited my nails.
As comfortable as I have this disease and talking about it, it is still so embarrassing. Here’s an example: I spent most of my afternoon working in the bathroom on Monday. The public bathroom. The public bath with only three, not entirely private stands. The public bathroom with only three stands in a company that is 90 percent female, where everyone knows each other and which shoes you wear.
In other words, there is often no privacy, and that can make discomfort worse. So I stayed home from work on Tuesday. Crohn it is not a silent illness. I wish all bathroom stands were soundproof.
When I say I need the bath, get the hack out. Don’t stop your shower, don’t start twirling your eyebrows and tell me that you will be “just a second”. Get out. now. It’s my turn.
I’ll talk to everyone about what exactly is going on in the bathroom – except Brian.
“I do not want to talk about it!”
I’m pretty sure the majority of what he knows about my symptoms is hearing it in our tiny NYC apartment (that sucks for me and probably for him too) and reading about it on the blog. And maybe he googled it before or something. I dont know. I do not ask.
I am open to things very vividly with my friends, my family and complete strangers that I meet on the streets of New York. But do you describe these things for Brian, who I live with? No thanks. Not personally. Maybe at some point I’ll explain all of this to him in an email.
The worst thing about flare-ups is the stomach stuff – but there are other side effects that I forget every time. I always forget the fever (103.3 last night) and the night sweats. I forget the crazy joint pain that is particularly evident in my upper back. I also forget about tiredness and keep wondering why I am so tired and exhausted after doing things that are usually semi-strenuous (you know, like dancing at a wedding or going up the subway stairs).
ALL DANCES NOW. Crohn’s Crohn’s Crohn’s!
I don’t know what it’s like not to have Crohn. Whenever people ask what it’s like to live with Crohn, I’m stunned how to answer. Because for the rest of you, how is it, not Crohn s? What is normal stomach pain? Is it the same for both of us?
I have had this disease since I was 7, so this is normal for me. The flare-ups are not normal, but in everyday life I’m just used to everything. I usually have more problems digesting food than “normal” people, and I can never just wake up and exercise – I need plenty of bath time first. Furthermore, living with Crohn is easy … fine, I think.
I’m afraid Brian will break away from me because he’s tired of dealing with all of this. I’ve been literally sick almost continuously since Brian and I started dating. I am afraid that one day he will decide that I am too high-maintenance and that he no longer wants to deal with it.
Lately I’ve felt very guilty about being sick. When I get like this, I’m constantly worried about getting people down – if I’m the girl who has to leave dinner early, or if I’m the one who doesn’t order a drink at the bar, or I’m going 30 seconds ahead crammed my time in the church pool before I have to go down the aisle. I hate to think that my illness can affect people around me in any way. It doesn’t seem fair to them.
I’m actually not stressed out at the moment. I’m not too busy either. With the madness of spring behind me I look at my mostly empty June calendar. I learn not to sweat the little things (although the sweat is soaked in sweat) and try to deal with the not so small things better.
How can I be stressed out with this little man in my life ?!
I have no intention of “beating” Crohn’s disease. I know – and have to respect – that this is a chronic disease that currently has no cure. As much as I want to avoid this flare-up and then announce to everyone: “I hit Crohn”, I know it’s not a reality. There may always be further flares.
I’m still figuring it out. Even though I’ve had this disease for 20 years (whoa), there is still so much for me to learn and I feel pretty unsuspecting most of the times. I’ve had great success with Prednisone in the past, but after the last time it made me crazy, I don’t want to go back to this treatment. I still get Remicade every eight weeks – I actually hang out there now.
My giraffe came with me today. It’s on my necklace. His name is … giraffe, I think. I dont know. I hadn’t called him.
I would really love to maintain this disease with a diet change rather than being on so many medications. Since my diagnosis, I’ve tried a ton of different drug cocktails including Methotrexat, 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 at the moment I’m juicy.
This is Brian’s hand. Not mine. Although, really, my hands are pretty manly and are probably the same size as his.
It was only 24 hours, but so far the juicy thing is interesting. My stomach doesn’t feel better, but I noticed last night that despite illness, I still felt like I had more energy than normal. The goal is to fill my body with lots of nutrients, but unlike eating raw vegetables and leafy meat, this should be easier for my stomach to digest.
I have no plan with the juice. I’m not doing a “quick” or a “cleansing”, I’m just trying to give my body a break by not (exceptionally) filling it with manure. Breakfast yesterday was fruit juice of some kind, lunch was carrot and beet juice, dinner was a green juice, and breakfast today was a juice made with pineapple, banana, and strawberry. I also think Brian sneaked spinach and kale into every one of them.
I hope that I will soon get better between the Remicade and the healthy things, and then I will find a plan with a new doctor. Doctors tend to pump me full of medication, and I want to find a doctor who has an open mind instead of an overactive prescription pad.
I think that’s all.