Introduction:
My name is Shyloh Star and I am five years old. But some people like to call me Miss Sassy Pants ;0) My nurses tell me that I am very silly and sassy. I love to play with words and to talk about ideas. My favorite singer is Selena Gomez. When I grow up, I want to be a singer, photographer, and a nurse. But for now, I am the team captain for TEAM SHYLOH STAR SASSY PANTS!
My Symptoms:
After 15 days of bowel rest, I no longer have painful, bloody, snotty diarrhea and nausea and vomiting. But now the test is…can I tolerate food?
My Story:
When I was only three years old, I was diagnosed with ulcerative colitis; but I have been suffering since I was born. Ulcerative colitis is a form of inflammatory bowel disease; this means my colon is very sick. My mom says she can count on one hand how many times I’ve pooped “normally” in my lifetime. And now that I’m learning to read and write, I definitely know how to spell p-o-o-p.
Because I’ve had to stay in the hospital so many times, I have made lots of friends at the Santa Barbara Cottage Children’s Hospital and at Sierra Vista Regional Medical Center. I am really lucky to have so many people in my life that care for me and are there for me when I don’t feel good.
At the moment, I am in the hospital healing from pancreatitis. My pancreas got really inflamed because it couldn’t handle one of my IBD treatment medications. When ever I would eat something, I felt the most horrible pain all over my belly. The pain in my pancreas was different than the pain I often feel in my colon.
I had to stop eating and drinking to make the pain stop in my belly. My mom said that if I stopped eating for a while, my pancreas and my colon would have a chance to heal. So the doctors put a Picc Line in my arm that pushes nutritional fluids up near my heart; that way I get all the minerals, vitamins, and fats that my body needs to survive.
Today, is the first time in 15 days that I have been allowed to eat or drink by mouth! I had chicken broth and it was the best soup ever :) I really hope I can go home from the hospital in a couple of days.
My mom and a team of super smart GI doctors are working together to determine the next plan of action in getting this disease in my colon under control. Unfortunately, there isn’t a cure yet for ulcerative colitis and Crohn’s disease. And since, I am allergic to most of the IBD treatment medications that are available right now, there aren’t many options left to try. This is why I know it’s important to support the scientists who are working so hard to find a cure for me and others like me.
I am so tired of getting shots and IV’s and, as much as I love my friends at the hospital, I really would like to do fun things that other kids get to do. I am excited to start Kindergarten; my classmates are all expecting me to come to school. I also hope to do gymnastics again someday; I haven’t felt good enough to go in over two years. When I get frustrated about things, my mom reminds me that I am a “healthy person fighting sickness”.
Sometimes I ask my mom, “is sickness winning?”. She always answers, “this is just the time we get to show off how tough we are”. When I pray, I like to ask God to “please help the scientists to find a cure for IBD”. One way that I continue my fight, is by fundraising for the Crohn’s and Colitis Foundation of America.
This year I got to walk (but mostly ride on my dad’s shoulders) with my mom and all my other Sassy Pants Team mates in the Take Steps for Crohn’s & Colitis Walk. I got a chance to meet lots of other kids and adults who understand the kind of discomfort and isolation I often feel. My mom and dad were so proud of me when I was called to come up to the stage to receive our very own team banner!
Even though I am very young, I believe that healing is in my very near future. And someday I will be able to help other people as people, like my nurses, doctors, teachers, friends, family and you, have helped me!
Thank you for reading all about me and my story.
Please take care,
Shyloh Star
Now here are a few words from my mom:
Hello Friends,
Take Steps is CCFA’s national evening walk and celebration and the nation’s largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn’s disease and ulcerative colitis. Over 1.4 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings together this community in a fun and energetic atmosphere, encouraging them to make noise and be heard.
Have you ever thought about taking action?
I know most of us patients, are exhausted and are just trying to make it through our days with out any poopcidents.
But your involvement will help support local patient programs, as well as important research projects. This cause is very important to me and I appreciate your help as we fight for a cure! The more money we raise, the closer we will be to making life more manageable for patients, like you, like my daughter, and myself, my aunt Linda, my aunt Reba, my aunt Wilma, my aunt Melba (RIP), and my great-aunt Frankie (RIP), who live with these diseases every day.
Please consider joining us and our efforts to support CCFA in finding a cure!
Your support will bless many.
Thank You,
Kaila (Shyloh’s Mama)
www.ShylohStar.com (If you’d like to support Shyloh and make a donation to help the cause, please visit her webpage)
https://www.youtube.com/user/ShylohStar
Where I’d like to be in a year:
Completely healthy and playing at the beach, going to birthday parties, riding my bike, doing gymnastics, eating, laughing with my friends, and going to Disneyland with my mom.
Medications I’ve tried:
Sulfasalazine…..didn’t work
Asacol….hasn’t worked
6-mp….caused pancreatitis
Remicade IV….caused anaphylaxis
Humira….caused pancreatitis
Prednisone…on and off, many times….all the side effects :(
written by:
Miss Sassy Pants & Mama K
—
–
My name is Shyloh Star and I am five years old. But some people like to call me Miss Sassy Pants ;0) My nurses tell me that I am very silly and sassy. I love to play with words and to talk about ideas. My favorite singer is Selena Gomez. When I grow up, I want to be a singer, photographer, and a nurse. But for now, I am the team captain for TEAM SHYLOH STAR SASSY PANTS!
