Let the Journey Begin!

Hello Blog-Readers!

Thanks for visiting my blog and reading my first blog post! This was a long time coming.

So let's start with an introduction.

My name is Kayleigh Quinn. I'm 25 years old, and I grew up in Fort Mill, SC and attended the University of South Carolina (Go Cocks!), graduating with a Bachelor of Science in Experimental Psychology. I was in Gamma Phi Beta and was heavily involved with USC Dance Marathon and Big Brother Big Sister of Greater Columbia. I always knew I wanted to work with children, which led me to St. Augustine, FL where I am now pursuing my Master's Degree in Occupational Therapy at the University of St. Augustine for Health Sciences.

Probably the biggest part of my life has been the presence of an autoimmune disease. I was diagnosed with Crohn's Disease when I was 12 years old, and later diagnosed with Celiac Disease when I was 23.  I have definitely been through the ringer growing up with this disease, but it has made me who I am and I am proud of it and how I've dealt with it.

So that's what I am dedicating my first blog post to. I want you to know more about me and who I am. I don't want you to take this as a sob story. I want you to read this and gain something from it, whether it be awareness of my disease, some kind of inspiration, or just a really great survivor story. And along the way, I will explain exactly why I chose the title of my blog, Six Chances.

As I said before, I was diagnosed at age 12. But that isn't where it started. My mom always used to say that something was always wrong with me. Every kid loves to hear that, right? Well she was right. Something was always off. My diagnosis came after a series of random symptoms that never seemed to go together. I was a dancer until I was 18 and had never had more than a sprained ankle. When  I was 11 or 12, my ankle became the size of my neck for no reason at all. The doctor said it was probably just a sprain from dance, but I knew that wasn't it. I started getting headaches that would have me out for hours. I would get sick in the mornings before school and cry because I liked school. I didn't want to miss school because I didn't feel good. I had some blood drawn and they found I was anemic, which means my iron levels were low. The doctor immediately sent me to a gastroenterologist and he did some more extensive tests (like a colonoscopy, biopsy, and more blood work).  We went back for a check-up with Dr. Houck and that's when the news came.

I had Crohn's Disease.

I was only 12 years old and I was going to have this disease for the rest of my life.

I remember the room. I remember the smell. I remember the clothes I was wearing. I remember sitting on the table completely numb. I remember my parents asking questions but me barely hearing them. I remember my mom holding back tears. I remember walking out and keeping a straight face. Until I got to the car. Then I let it all out. I let it all loose and just cried all the way home and probably for the rest of the week.

I immediately started on medications. I had never even taken a pill before. My dad actually had to lock me out on the front porch until I took the medication. I sat there with two glasses of water, peanut butter, crackers, juice, and about six pills I needed to take before being let back in. Sometimes tough love works best, because guess what...I now take about 10 pills a day without a problem in the world. Those medications did what they needed to do until I was 14. That's when it all hit the fan.

I was in the hospital for a week at the end of my eighth grade year, which at the time, was the longest stay I had had so far. I again went in to see my GI doctor, and then came the "S" word. Surgery. I still hate saying that word, but I had to do it if I wanted to be healthy again, or at least healthier. We scheduled it for July 28th so that I would have time to recover and then I could start high school.

Well things didn't go as planned. I was very unhealthy. I was about five feet tall and about 80 pounds. That's not good. I had the first surgery, which was basically to remove the section of my colon that was narrowed and unhealthy. My surgeon later said it was the size of a baseball and because it was all so jumbled, they didn't know exactly how much they took out.

A few days later, my body decided to revolt and we found out that the section that was sewn back together was infected and they needed to go back in and remove more. So they did. A couple days later, the area abscessed, which means it was full of pus. They went back in again. A couple days later, another infection. This time the doctor pulled his colleagues in because he was at a loss for words. He didn't know what else to do. So they went in again, but instead of going through my original incisions, they went down the middle of my stomach so they could see everything and make some decisions. The decision was to give me an ileostomy. They told my parents I was very sick, but that if the ileostomy worked, I would be able to gain some weight and hopefully make a full recovery.

I don't remember much from these first few weeks in the hospital. I vividly remember three things, all of which happened at random times, and I honestly don't know what order they happened. My parents and family members always offer to tell me what happened, but I don't want to know. I know enough. God would give me those memories if He truly wanted me to have them. I feel I blocked them out for a reason, and that reason was so that I could live my life without the images I saw haunting me.

My "awakening" was quite vivid. I remember going to the playroom when my brothers visited one afternoon. I kept telling my mom that I needed to go to the bathroom, but she knew that couldn't be the case. She finally took me into the bathroom, I lifted up my hospital gown, and I saw the bag and freaked out because I didn't know what it was. Everything after that afternoon, I remember.

I stayed in the hospital for another four weeks. I eventually went home with a PICC line for IV fluids, an ileostomy, a wound vac that covered the incision down the middle of my stomach, a home health nurse, and a homebound teacher. I would miss my first semester of my freshman year. I would miss my 10th year of dance. I would have to mix my own IV medications every night. I would have to gain some weight if I ever wanted to get rid of my ileostomy.

And then it happened. I grew eight inches and gained 30 pounds. All within FOUR months. it was amazing. So we scheduled the surgery and on December 27th, I had a reversal.

I met with the surgeon for the last time and he told me this: "You were the sickest child I have ever encountered, but you beat it. And now you are my most improved and I couldn't be prouder."

Then he retired. We joke that I put him into retirement and that we basically paid for his vacation home on the beach somewhere, but in reality, he had been planning to retire regardless. He actually ended up staying with the practice until I was completely discharged because he wanted to experience the whole journey with me. So shout out to Dr. Attori, wherever you may be, for sticking through it and helping me get back to my life. Couldn't have done it without you.

Years went by with virtually no problems. Stress affected me most. So college was difficult. I struggled to stay healthy, but by taking an extra year (partly because I changed my major twice), I was able to graduate and come to grad school. In my last year of college, I experienced a lot of weight loss in a very short period of time. I had an endoscopy, and the biopsies and blood tests came back as positive for Celiac Disease, which is an autoimmune disease that causes your body to attack any kind of gluten you ingest. So I went gluten-free. Cut it out cold turkey. And within a few weeks, I started to feel better.

Then we move to now. Now I am in grad school, pursuing a career I could only imagine of having at the age of 12.

BUT, you'll have to tune in next time for an update on now. And with that update, you'll find out why I named the blog, Six Chances.

So if you've made it this far, I applaud you, because I know that was a lot.

I want this blog to be a little bit of everything. Yes, it will include a lot of updates, but I don't want it to only be about Crohn's Disease. That's not me. I'm not just a disease. So I will honor that by including my favorite things. Recipes, lifestyle and wellness tips, my workout regimen, my daily life, and my overall journey through life. I'm going to give you an up-close view into my life.

I invite you to join me, because without all of you, I wouldn't be where I am today. I am who I am because of the support I have received, the prayers that have been lifted towards me, and the kind words I have heard. My main role is to be an advocate, but not for what you think.

My role is to advocate for LIFE. It's a wonderful thing, and I enjoy it everyday!

So come enjoy it with me!!

XOXO,
Kayleigh