Free yourself, baby.

Listening to Ed Sheeran
He always puts me in the perfect mood to write a blog. Today I was at school and I had a long talk with my teacher. We got into the topic about my journey and for once I felt a little closed off, shut down. Like I didn't want to talk about it, It was like I wanted to be the Kayla Escobar that had no Health issues and honestly I didn't want him to feel sorry for me, but treat me as I,'m just like everyone else. Then I log on to Facebook and read  "you're my hero."
I had a smile that went from ear to ear because for once I felt like everything I've went through has its purpose, and the person that I wanna be and have always wanted to be. Is starting to mold.

When someone's pain is so great, and everything they are facing or battling is so strong and nobody seems to understand their struggles. Their day to day life. I wanna be that person that makes it better. The person that could give them a hand and not only tell them it's going to be okay, but reassure them. I wanna be someone's hero, and I wanna be the girl that helps. Not only the girl who has this stupid disease and has a story to tell. We ALL have those and I know someone's struggles are a million times worse than mine. I always was a strong believer "that someone has it a million times worse then me" and it's so true.

So today... I just wanna reach out and touch somebody's life. I want you to know you're not alone. And you don't have to fight your everyday battles alone and just because you feel different, doesn't make you different at all. You may not be able to share openly or you may not be able to talk to your sister, brother or parents. Maybe you can't talk about it at all. Blogging has really helped me. And since I've started this. I've had people write me and tell me their story.
That makes me feel so good, that one can read my struggles and trust me with theirs.
Sometimes you need that ear, that person. Sometimes you need to let it out, and free yourself of that pain. ...

Stoma-lily.

So I suggest if you have a weak stomach you shouldn't look at this. It's pretty amazing to me how over the years they discovered somebody can actually live without their colon and this is how.
My stoma-Lily comes out of my tummy and it is a part of me. You learn to get use to it.

At first I was extremely nervous and I'd get so shaky every time I had to touch it but now it's my new best friend and the fact that my three year old loves mommy's ouchie and protects me every time she thinks or hears somebody talking about it or making fun of me.// Makes me that much prouder to own this and face reality. by the way..She doesn't like it one bit even if you talk about my stoma-lily in a good way.

So this is where my ostomy bag comes into play. It's attached to me. And it's where I use the restroom. Pretty amazing huh? I mean, I would have totally of done this 3 years ago if I knew my life was going to improve drastically and I was going to be able to eat anything and everything and actually enjoy life and have mine back.

It's almost time for surgery #2 in this three-step process. And I'm more scared and nervous now for the 2nd one MORE then I was the 1st.
And believe me I was pretty nervous. But again I had my dear friend Elyse who talked me through the whole thing and even told me stories that will forever stay with me as I experience my own. I think the thought of actually having to reopen my incision just sounds so painful. I've joked that I'm going to flee the country or move to Hawaii but I'm started to really think that isn't such a bad idea. I mean I can really get use to the thought of having my bag my entire life. It's not so bad. Before all of this I heard horror stories about having a bag and how life was going to change but it actually hasn't. If anything, mine has gotten a whole lot better. I mean I can actually enjoy a beer with no pain maybe even an entire six-pack. My favorite is bud light. Thanks for asking!

So February 26th; set in stone and I'm going to be ready. I know I can do this, I mean I've gotten this far I have too. But if you don't hear from me on that date. I'm probably enjoying a cocktail on the beach somewhere and my name is no longer Kayla but Kawaliaka.

Just kidding.

But I still have another month.
And I'll be physically and mentally ready. Not so much emotionally because ill probably be a wreck but with my family and friends by my side. Ill get through this like I did the 1st time and how ill get through it the 3rd time as well.

You never know how stronger you really are until the only thing you can do is be strong. And you never know how great something can actually be unless you experience it for yourself.
And With all these challenges that have been thrown my way, I'll accomplish them with just a little help from god holding my hand.

Ps. Don't mind the outfit in picture one.

January 20th, 2013

Today has been eventful, amazing, unforgettable and one for the history books. My forty-niners are going to the Super Bowl, the Super Bowl. The feeling I got from that today was absolutely amazing and so exciting. I mean through all the things I have been through and I'm still going through this is bitter-sweet. I just hope my doctor will let me postpone my surgery until after the Super Bowl because I need to be able to jump up and down, scream, laugh and yell. My San Francisco forty-niners are going to the Super Bowl if you didn't already know.

Invisible Disease.

But you don't look sick... I get that all the time.

Trying to understand.

I think there's always been a part of me that needs to express herself. I have to let everything I had or have been feeling out. It's not always good to keep it bottled up inside, I mean that can't really be good for anyone right? I always try to understand things and put a why by it for instance "why was I diagnosed with colitis?" I mean why is anyone ever diagnosed with a disease. A lady I once met at my remicade infusion told me because sweetie God knew you could handle it over anyone else close to you. And yeah, I wouldn't want to give or wish this disease upon anyone close to me or anyone at all. But why did he think I could handle it? I know it's not the worse thing in the world and trust me I've gotten pass the worse I think, but still I always have to question why and I always have to try and understand things. Everything for that matter. I'm so grateful for my family & friends. Especially my parents for everything they have done for me when they didn't have to or shouldn't have. 
Without them who knows where I'd be. They give me great insurance because someone with my condition sure can rack up medical bills so I'm beyond thankful for that. My mom works her butt off to give me that benefit and I don't know if I've ever expressed how thankful I am for her and all the many things my parents have done the last 24 years for me, but everyday before I go to bed. I'm thankful and I'm grateful for them. They are my backbone and they have given me so much strength. I don't know how they stay so strong and one day I'm gonna to re-pay those two amazing people in my life.
God thank you for my parents and thank you for always being by my side even if I ask silly questions and always try to understand why. I know you wouldn't give me anything I couldn't handle. That's exactly why I'm able to write this because I know what will always be my answer, you gave me parents that would go to the end of the world for their children and that's all ill ever need. My mom and dad by my side. Holding my hand through this entire process...

Story of my life.

So in the last few months I've been asked "What illness do you have anyways?" Well the answer is ULCERATIVE COLITIS and the next question is always "is it serious?"
I'm not going to die even though at times it may feel like it.. I'm going to be just fine.  I have been for the last 3 years so I'm pretty sure I can handle another.
In my case I had rare case of colitis in which my entire colon and rectum were inflamed -
Usually with light medication and remedies there  is a solution BUT again in my case I was allergic or had side effects to almost everything.
I was beginning to give up and as I tried asacol, steroids, humira, 6mp, and remicade infusions. Nothing seemed to work and stress and anxiety only added to my list of reasons why I would flare up. I never really went into remission. My colon was pretty upset the entire 3 years. I was diagnosed when I was about 6 months pregnant. I always felt like something was wrong in Highschool but it isn't something you Normally talk about in home room, at volleyball practice or with your Highschool boyfriend. What are you suppose to say, "hey-- I'm bleeding through my butt!" It wasn't the normal talk you had that dinner table either with your parents.
So here I am bleeding at 6 months pregnant and I finally had to admit that something was not right with my body. As scared as I was the only thing I needed to know was that my baby was going to be okay. So many nights at the hospital and in and out of the emergency room. Nights where Malia's dad had to hold back my hair and sleep in the restroom with me, holding my hand and reassuring me that we were going to get through this.
The doctors promised that once my baby was born my colitis would pretty much go away.
But they were wrong. It only got worse and I spent nights in the hospital alone. Where I was throwing up and pooping blood. Nothing I did made it better. I developed kidney stones, anxiety, mood swings and I was unable to be myself. I always worried what-if I have an accident. I always need a restroom present. I was having between 8-15 bowel movements a day. My social life went out the door because I couldn't even enjoy a night out without feeling sick or fear I might just have an accident.
I'll skip most of the detail stuff. Things always got worse before they ever had a chance to get better. I was sick and believe me I was pretty good at hiding it. Everyone at work would always say you don't look sick but there were days when I just wished they could be in my shoes. That's one thing I always did was put my shoes on at 4 in the morning and went to work. . .
I had a baby to support at home and I was going to do whatever it took. Even if I felt my worse nobody could ever tell.
So ulcerative colitis to me:
Was losing weight. I was 125 by the time I had Malia then I gained about 20 pounds and by Christmas in 2009 I was 105 pounds.
I couldn't eat anything, it always made me sick. And the pain was so intense and extreme I would throw up between 3-5 times a day. The medications caused anxiety, break outs on my face, Swollen face which I hated and they just didn't seem to work because every time I went to the doctor my colon was still inflamed.
So as I faced a difficult time my colitis only got worse.
I was hospitalized for about a week in Fresno, CA before I was transferred to Cedar senai where I met the most amazing surgeon. I almost forgot to mention I didn't just have one doctor or two but four doctors who helped diagnose my colitis. A friend who is very dear to my heart named Elyse introduced me to Dr. Dubinsky who has been a true angel.
Through her I was introduced to Dr. Fleshner.
So the picture you see above is my new friend Stoma-lily.
My new friend which will be apart of my life for another six months.
Blog to follow regarding my ostomy bag!

Xo Kayla.