After the inital shock wore off...

It was good. Telling everyone all at once? It was kinda good. It felt good at least. I sat there the whole night I posted it and just watched the numbers on the views jump, knowing each time they did one more of my friends was listening to me from where ever they were. It felt like a monster weight was lifted off my shoulders and I could just be me again.


For the most part, everyone has actually been really good about it. No one has freaked out horribly, although some people initially were very concerned and had a lot of questions...which I expected. I welcomed actually. It shows people care. And while some had easy questions (does it hurt, what do you take, etc) some had really hard ones, ones that did make me want to cry because truthfully I don't know. I don't know what will happen to me. Chronic illnesses are ones that never leave you and are often the most unpredictable. It's just about how I take care of myself from now on.


I look back, and see how much I didn't used to take care of myself. How I let myself go really. And Crohn's is not a result of that, Crohn's is a luck of the draw type of deal, but still. It took a life long illness to make me see that I had to change how I was living. I should not have eaten fast food as much as I did, or eat sunflower seeds as often as I did. I should have used less sweet n low or drank more water. Because maybe then it would not have been such a shock to my body to go through everything I am now. Maybe it would have been easier. But then again, nothing with Crohn's is ever easy.

I do worry about the rest of my life still. How far my disease may progress or how it will effect my future relationships or lifestyle. When I went to my normal doctor for being sick a couple of weeks ago, she looked over all the forms sent to her by my gastro she said that it was just a little part of my intestines so far, but the so far kinda haunts me.

I think it's all about being strong. And not think about the so far's.

M

I don't want your pity, I want your support.

My dear friend,

If I could tell you this in person, I would. But I can't. I can't say the words to you without breaking into tears, I can't talk to you about what is happening without feeling my own heart swell up in worry. So read this, and just pretend I'm right there with you, explaining it all.

Remember when I got really sick a couple months ago? How I lost all that weight and just looked miserable? Remember how you would watch me clutch my stomach in pain? How I couldn't make it through one hour at work or one class without having to excuse myself? Remember how I had to keep going to doctors, and they kept telling me I was just sick?

Well, I was just sick. But it's the kind of sick that doesn't ever go away. I have what is called Crohn's Disease, and I'm telling you this because Crohn's will start to effect me in a different way. And I hope you are ok with me being quite frank when I am talking to you about this, because it's the only real way to describe it.

Crohn's Disease is a chronic illness that is also a type of IBS ,which, I know is kind of confusing. Basically, if you were a normal person, what happens when you eat something that upsets your stomach or intestines, they become inflamed, and that is what causes you to have gas, stomach aches, or long trips to the bathroom, right? Crohn's however, works differently. When my intestines become inflamed, my immune system thinks that my intestines are being attacked by something, and therefore go to work on it. However, the problem is that in all honestly my immune system is actually attacking my intestines, causing them to become even more inflamed and actually start to deteriorate.

Crohn's presents itself in people most often when they are in their late teens or early twenties, and usually happens as an after effect of another illness. I am 20 years old and right before I started experiencing the symptoms, I had just gotten over a virus. My symptoms included a lack of appetite, weight loss, constant bowel movement, lower abdomen cramps, and nausea. There is very little evidence as to what exactly triggers Crohn's Disease, or what causes it. DO NOT freak out and think that you may have it, I had my symptoms for over a month and it was only because I underwent a colonoscopy and endoscopy. They took biopsies from both my stomach and intestines and sent them off to be tested for a multitude of things. It took about a month for the final results to come back, and the biopsy from my intestines came back Crohns.

What I had back then? That was a flare-up. Something that occurred when everything I just described was set into motion. It was not a little one, like the kinds I have now, but an embarrassing month long painful episode. It was embarrassing to have to constantly excuse myself, to have to beg to have one of my coworkers come watch over the cafe so I could run to the bathroom. It was painful, because it is a constant cramp that you cannot ignore, because you are sore and bleeding. I've never been in so much agony as I was back then.

Right now? It's really scary. I take medication twice a day to help my stomach digest food and produce less acid, which will help inflame my intestines less. However, if I take it too late or early, it can mess with my system. I also have a restricted diet, with foods that I know I cannot eat. However, a big part of the diet will be trial and error, which makes eating a game of Russian Roulette. There are new treatments thought up everyday, such as IV treatments or raw food diets, but all these things are still options to explore. However, the trick will be figuring out the right combo of everything, so bear with me as I am tested like a guinea pig. However, from day to day I still have flare ups, which are painful and uncomfortable.

Yes, it could get worse. I could have another horrible month long flare up. I could start to not respond to my medication. I could get put on a much stricter diet, one were there is very little for me to eat. Parts of my intestines could die, and I could have to have surgery to remove them. I can't die from Crohn's, but I can face bouts of dehydration and because my immune system is compromised, I will always have to be really careful about being around sick people. Some of my biggest debates at the moments are what immunizations to get. So how I am now? This is the best it will ever be for me, so I am grateful.

I didn't tell you because I didn't know how to. I was scared that you would look at me differently, or that you wouldn't care at all. I was scared that you would think I wanted your pity or your sympathy. I just wanted to be who I had always been. I wanted to just be me, but as I get further into this, I realize that I have to tell you, because it may get bad. I have to tell you because some days will be better than others and I may need your help to get through them. I want you to ask questions if you have them, or read through my blog if you want. Because it is extremely hard for me to talk about it, and it will help if you understand this all.

It's still me, it's still Marisa. Yes it is a different me with a different set of rules and a new outlook on life, but I created this blog so that I could get through this all. This is me dealing with it, and as I said in my opening post, this is my journey though this and I am going to tell it. You are more than welcome to come along for it.

It is after all A Girl's Guide to Crohn's.

M

The Next Step

Frequently I talk about how I am not ready to tell people. However, as I go more and more into this, I realize that I have to talk about it. So I took the first step, and called my old dance teacher, who suffers from Crohn's as well.

She answered the phone and I told her who I was, feeling the whole time I was about to burst into tears. And finally, as I started to cry, I said it,

"I have Crohn's and I'm scared"

The second I said it, I felt so much better. All the fear and anxiety I had left me the instant I said it. And she was so great. After asking about my symptoms and diagnosis, she told me her own story, so similar to mine. She gave me tons of great advice, both things I can do to avoid flare ups and what to do when I do have one. She also gave me tons of support, telling me what to expect and giving me a lot of hope. I just kept thinking,

"It's ok. See? You are going to be ok"

And not to say that there weren't some scary moments, because there were. There were some things that she told me, things that may happen to me in the future, like fistulas and such. She talked about painful flare ups and having to be a bit of a guinea pig while I figure out courses of treatments, but still. I felt such hope. Because she is still standing, still living, still moving forward.

It was a big step for me. I mean, it was a huge step. To tell someone who isn't my family or a close friend was a big moment. It's the first part of my recovery and acceptance, it's the first part of the me growing as a girl with Crohn's.

It's been a little over a month since I've been diagnosed, and I've only started to scratch the subject of who I am now, and who I will become. This disease has changed me, in a way that I never really thought that I would be. I realize now that because some of my days will be taken from me, I have to live the good ones amazingly great. Otherwise later I may miss them later on.

I can't promise that sometimes I still won't cry or break down. I can't swear that when I tell people I won't burst into tears. One of the best pieces of advice I've been given through all of this is this:

You are allowed to mourn the part of your life you are losing. You are allowed to be scared and worried. You can cry because this is scary. But you are strong, and you will survive this.

This is my life after all. My new one.

M

What do you say?

I have known, in my day to day life, exactly one person with Crohn's. She was my dance teacher and I never really understood what was wrong with her. I knew that she was sick and that sometimes she wouldn't feel up to some things, but I never knew what was wrong. Even when people would tell me, it wouldn't really register.

Once I got my diagnosis, I got into contact with someone that still knew her, and asked if they would ask her if she would be willing to talk to me. She said yes and gave my friend her number. I've had it for two weeks, and I haven't called her yet.

I mean, what do I say? "I know you have this crippling illness and so do I, how do I deal?" I mean, what am I supposed to say? I don't even tell my friends and yet I am willing to spill my guts out to someone I haven't talked to in years? How do I do that? What do I say? I mean, do I even have questions to ask her? If every one's case is different, then I don't know what she can do for me. But it would be nice to talk about it. I just don't know what to do.

This telling people. It's hard. I still am not really telling people. Because I'm not ready to have to explain my future over and over again. But someone who knows? It might be better, it might help. I've heard of support groups but never really thought about going. It's almost as though this is my support group. Those who stumble along this post and read and leave comments, those are the ones with the advice and help. Do I go somewhere where I sit and talk about my feelings? How scared I am?

Maybe I'll call her tomorrow, maybe next week. I may never feel ready to know what I am facing from someone who lives it. A doctor telling me is one thing, a first hand experience is something different. To know it all from someone who lives it, to hear about what is going to happen or could happen, it makes all the difference in the world. We'll see...

M