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

Four Years of Jeans.

I am sick. I have a cold/flu/whatever. So I went to the doctors, armed with anxiety and worry, knowing that the way they would chose to treat me was via antibiotics. So I wait patiently and quite quickly the nurse called me back. She asked me to step on the scale and I did. Now, here's where it gets interesting.

Before Crohn's, I did not want to look at that scale. I wouldn't even let them tell me. I shut my eyes very tightly and just liked to pretend it would say a number that I could live with. When I got first started having Crohn's symptoms, everything changed. My first visit, I as usual, refused to look at the scale. When I went on my second visit, two weeks later to be re diagnosed (wrong again), the nurse made a comment about my weight, so I asked her. In the span of two weeks, I had lost close to 20 pounds. I had been so miserable that I hadn't even realized it. On the next visit (which she referred me to my gastro.) I had lost another 10. Today? I stepped on that scale and realized that in a span of 3-4 months (from flare up to now), I have lost a little more than 40 pounds. Holy f^&$ s&**.

It was hard for me to see it, because I don't usually notice weight loss like that. I felt my clothes differently, I heard people say it, but I couldn't visualize it. So I took a picture of some jeans...

The biggest ones? Those are from 2006-2007, my senior year of high school. Miserable weight. Horrible. The next are from the 2007-2008 year. I had started working more, started moving from class to class on campus, and the change was small, but an improvement. The next are from the 2008-2009 year. A slightly bigger gap between the two, but nothing major. And then this years jeans, a huge gap between the two. And those are not even my best fitting pair. Point is, I was losing, I was, but not like this. Not this huge gap.

So is this my trade off? My silver lining? I have this giant mess to deal with for the rest of my life, but BONUS! I will also lose weight for the rest of it? Will I get told I am prettier or get noticed more because my body has shrunk? People who say, "You look great! Have you lost weight?" I just don't know what to say. How do I tell them I didn't do this? That my body rebelled against me and forced me to. That is just crazy and I would never tell anyone that. So I just smile, nod, and change the subject as fast as possible. Because to me? This feels like cheating. I feel like this isn't me. Like if I were 40 pounds heavier still, people would not say a word about how I look.

I know, stupid little girl, whining about how she lost all this weight and didn't lift a finger. I would be thinking it too if I didn't understand it. I know this is my silver lining and I just cannot force myself to accept it. I wish I had earned it. I wish I had worked my ass of and got it that way. But I didn't. I want to be praised for my hard work and I didn't do any. It's maddening.

Stupid girl. Stupid Crohns.

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

To Vaccine or Not?

See this is exactly the kind of thing I was dreading would happen. I would have to make a huge decision based on the fact that my new compromised immune system sucks. Which, FYI, IT DOES.

Ok, so here is the deal. The summer is ending, the cold is approaching. When cold happens, illness tends to follow. Now, normally, this would not be a big deal, at least back in the old days. I would go to the doctor, get some antibiotics, drink clear liquids, and wait for my immune system to kick the ass of whatever little evil was attacking me. But now, now it's all different. As previously mentioned, antibiotics are the worst thing for me and letting myself get dehydrated and surviving on next to nothing is also a horrible idea. Plus, my immune system would rather attack my intestines so getting it to rally to kick the flu bug out? Hardly going to happen as easily as it used to.

So now I join the ranks of small children and old people alike, who get the sickness easily and have to take all the precaution in the world to protect themselves. Now, small children don't have much choice in this option, but old people do. The option is to get a flu shot. Which is something that I am usually really against. I personally believe that injecting yourself purposely with a strand of something that could do extreme damage to you (since the whole reasoning behind getting it is that you are too weak to fight it yourself) is just a dumb idea. I mean, it just seems crazy and dangerous.

But Dr. K and other specialists tend to think that it is not crazy and is not dangerous, and in fact, want me to go a step futher...ready...? When the BRAND NEW H1N1 vaccine comes out...they want me to take it. They want to me to inject myself with a disease that has been known to kill people with weak immune systems just like mine. Oh, and one that is BRAND NEW.

I...I can't. I mean, I know I have to listen to Dr. K, and do as he says, because he has my best interest in mind. But I can't help but doubt this every step of the way. It just seems like a very bad plan, to load me up with compromising vaccines in hopes that it can in some small way, build up my immune system to near it's former glory. But could you do it? If you were me? Would you put yourself at risk to possibly prevent yourself from getting something that you aren't guaranteed to get in the first place?

Like I said, these are the kinds of decisions I didn't want to have to make. I thought that I would have time to get used to Crohn's before I started dealing with the big stuff. And this, while it may seem like nothing to you, is everything to me. The decision I make is one that will determine how the next few months go for me. I just want to make the right one.

I need to make the right one.

M

When you date me, you date Crohn's.

I am not a fan of the first date.

I hate the awkwardness of it all. The getting to know you questions, the dull silences, the worry about what the other person is thinking about. It's really not my favorite thing to do. Once I get to really know someone, I'm fine, I'm great, I am totally at ease. But damn it if I don't dread first dates with all the passion in me. Even if I know who I am going on a date with. It just sucks. But I still did it. Just cause I figured one of these dates has to lead to something better, right?

So the other night, a guy friend of mine asked me to go have mexican with him. Not even really an official date mind you, and I said no. Why? Because do you have any idea what mexican could do to me? DO YOU? It could make things horrible and painful for me. But I couldn't tell him I didn't want mexican, because that wouldn't make sense. I am mexican. Of course I like mexican, or I did. But I can't tell him why, I can't tell any possible date why. Because I can barely choke it out to friends I have known for years, and I am supposed to tell a date? HA. So not going to happen.

Dating is supposed to be hard, I get it. I've been doing it for awhile and I know that rarely is it as easy as you wish it would be. But I thought it would get better as I got older. And now it won't. Because now, I have to worry about eating something upsetting on a date because I don't want to talk about it and therefore agree to go somewhere where I place myself in danger of having a flare up.

I know that doesn't seem like anything to you, but you've never had a flare up. I've been to restaurants where that happened during my last flare up, before I knew what was wrong with me. Every bite made me feel like throwing up. My stomach and intestines pain was so intense that I felt like curling up into a ball to make it stop. I had to excuse myself several times during these meals. I would literally sit there just trying to delay the next time I would have to get up and leave, because it was just so embarrassing.

I can't bear to do that on a date, I can't risk doing that on a date. So what do I do? How do I date? If I can't tell them, and something happens, what do I do? I know, I know, telling them upfront would just be the easiest option. But if you've been reading, you know that I am just not ready for that step yet. So what do I do, O brilliant readers?

I miss the days when all I had to worry about was awkward silences.

M

The Support Staff

You know, I think that if I didn't have anyone I would go crazy. I know that I said I didn't tell anyone, and that's true, but that's not to say that no one knows. And so, in a sense, they have become my support system. My very own legs to stand on. So that when I can't do this, I have them.

First of all, my parents. My parents of course, do the parental things, remind me to take my meds and ask me all through the day how I am doing. But really, it's the little things that make them all stars. Like how they make sure that I always have something that I can eat that won't upset my stomach, even if it means making something extra. Or buying new supplements or meds that will help me with fiber intake or replace protein lost. For reading books on the subject and for watching over me. My parents will always let me cry on their shoulders even if I am too stubborn to do it. They talk me down after I go all crazy and panicky after I read medical journals and horror stories about Crohn's. They never stop telling me that it will be ok.

My brother, who for the most part doesn't talk about it. And I love him for it. He makes fun of my special meals, reminding me that the world does not revolve around me. And I know he doesn't do it to be hateful or rude, he's just trying to make light of it. He keeps me from feeling sorry for myself all the time. He is my big heavy rock, grounding me from floating away sometimes. It's ok that he doesn't want to talk about it, because I don't. And when I'm around him, I don't have to think about it. I know he loves me, and I wouldn't want him to act any other way. I'm his big sister, I have to set some kind of example.

My best friend, who has protected me since we were three years old. Who I fight with from time to time, but when I need her she will always stand right there beside me. I always wanted to be as strong as her, as brave as her, she just always was. She was my big sister and she would make everything better, even scaring away the bullies for me. Now with this bully, she's still doing it, giving me the encouragement and strength I need to fight harder, live stronger. She's my best friend, and I'm glad she's always there for me.

The "stranger", the person I barely know, but I know reads my blog. For letting me talk about it, for listening to everything and always willing to be there for someone they barely know. I can't talk about it with many people, but it's nice to know I can talk about it with them. They show a kindness toward strangers that I didn't know was possible. I'm glad I know them, because their past experience has allowed them to understand what is happening to me, and because they are a great person.

My fellow Crohn's people, who happen to come across this blog, or who I meet. For giving me advice and sharing their experiences with me, for letting me know that I am not alone in all of this. For letting me know that there are people out there fighting just as hard as me and not all of them are horror stories. That people everyday live with this and go on to have happy lives. Thanks for letting me see that.

Those people? They save me. Everyday. They pull me through all of the pain and worry that I have about a disease I know so little about. They make me laugh and they let me cry and I feel better knowing that I have people like them on my side. Living with this is not easy, it's so incredibly hard. It's like a game of Russian Roulette and you never know what will end up happening to you once it starts. But that's life I suppose. My stakes are just higher than most people's.

I know that the biggest support is myself. I know that I am the only one who can really force myself into surviving and living. But I've done the whole do-it-yourself before. I've fixed a lot of my own wounds and trust me when I say it is nice to have people. It's nice to have people in your corner, jeering at the opponent. It makes me stronger. It makes me want to win.

You know those moments, right after all of the pain and suffering, when you have this moment of clarity all of the sudden? Like you realize that everything will be ok? When you could run outside into the night and sing "I Will Survive" at the top of your lungs just because you know you will?

I have those moments because I have those people.

M