We Are Healthy People Fighting Sickness!

Miss Sassy Pants and momIntroduction:

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.

Sassy pants on the throneAt 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.

Shyloh Sassy Pants CCFA

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






22 thoughts on “We Are Healthy People Fighting Sickness!”

  1. this is an adourable story!

    I can only imagine how hard it would be to be diagnosed with this disease at such a young age, being diagnosed at 17 was really sad for me but in the last year i’ve learned to live with it as part of normal life thanks to medication!

    good news is, there’s new treatments being made every day! and scientists are sooooo close to finding a cure for us! they’re practicing on teeny tiny mice, because their digestive systems are a lot like ours!

    so one day soon, we’ll both be well again and not have to have any more picc lines, icky shots or IV’s!

    You’re a very, very brave girl, Shyloh, and we could all learn a lot from you :)

    Love from Ireland!
    – Jamie

    1. Hi Jamie!

      Thank you so much for your encouraging words to my daughter, Shyloh Star!
      You are SO RIGHT!
      I was told by a G.I. Guru (aka Pediatric Inflammatory Bowel Disease Specialist) that there WILL be a cure found during Shyloh’s lifetime! And that’s for you too!

      God Bless,
      And Keep Believing!!

      Hugs!
      –Kaila

  2. Shyloh,
    You are so smart and brave. I know one day you will be better – we all will be. You have many wonderful years ahead of you. Please keep us updated on how you are doing.

  3. Incredible Story, and definitely going to have a super happy ending!

    Too much love in that family not to work out well!

    thx So much for sharing and best of luck to all of you,
    Adam

  4. Oh sweet girl this was beautiful! I am so sorry that anyone has to suffer through this and the fact that you are so small just breaks my heart. You stay strong! It sounds like you have a wonderful support system cheering you on. Im cheering you (and all of us UC’ers) on too! Prayers to you and your family!

    1. Thank you, Jessica, for your prayers!

      Shyloh REALLY needs them!

      Unfortunately, she hasn’t been tolerating food so well since the 15 day fast on TPN.
      Things are hectic right now.

      “But when a fearless heart believes, miracles happen”

      So Be It!

      In health & wellness,
      —Kaila

  5. Hi Shyloh,
    I wanted to thank you for sharing your story. I know you will be well very soon one way or another. You are a very brave girl. I too have a little girl with UC. She is 6 but was diagnosed at 3 like you. She has also not been able to use many of the meds since they make her very sick as well. You are not alone! Just think, you are dealing so bravely with such a difficult thing, you are stronger than many adults. If you can tackle this disease with your great attitude I know you’ll be able to do anything you want as you grow. I will be thinking of you and hope to hear that you’re well and running around at school very soon!
    Sherry

  6. Shyloh, you are one of the bravest, positive and toughest little girls I know. I hope and pray that one day you will be able to do all that you want to do. All the things that other people/kids take for granted. God see’s your heart and he hears your prayers. Just remember that God uses all things to work together for our good. I am praying for you sweetheart. Keep your chin up, life is about to get better! ;)

  7. Hi Sassy Pants! You are such an amazing and strong girl. Thank you for sharing your story. I know that with a spirit as wonderful and genuin as yours, you will inspire many people and make us all realize how lucky we are to have you in the world.
    Krista

  8. Wow, what a story!
    I’ve had ulcerative colitis for over ten years now. it beats you up! Then just when you think you’ve won or wining it comes back and does it again. It’s painfull, it’s disgusting and it humiliating and it can be beat. Hang in there, keep your family and friends close.

    1. Oh, yes…the joys of humiliation…
      You gotta look back at those mortifying moments and somehow find something about them to laugh about.

      I use my colitis poopcidents to identify with what my daughter is currently facing. The funny thing is…when I tell Shyloh about one of my mortifying moments, she goes and tells EVERYone my embarrassing secret!

      We wish you the best of health, Adrian!

      –Kaila & Shyloh

  9. Connie Doherty-Kendall

    Dearest Shyloh, I love you more than words can say. You have so many prayers being said for you and I hope that you will be feeling better very soon. You have the best Mommy and Daddy in the world and they love you to the moon and back. Take it easy and please know how much we all love you! Aunt Connie (your Daddy’s auntie!)

  10. Hello there Sassy Pants!!

    You must be so proud of youeself. Great attitudes get us through all of this mess.

    I too believe a ‘cure’ is just around the corner.

    Smile!!

  11. Hi Shy and Mama K
    I just don’t know how put into words how I feel about you both…Kaila you are an amazing mom and Shyloh you are a super amazing little girl..I wish you both lots of happy days ahead xxxxx
    My mum and dad send their love to you too xxxxxx

  12. Wow!!! Kaila and Shyloh your story has just put a huge smile on my face as I am going through a rough time right now. You are the sweetest little thing and I hate that you have to go through with all the awful things that UC has to offer. You are so brave and optimistic and I hope you keep it up! I myself had tried all the big drugs with no sense of relief. So I am curious…since your case of UC seems to be pretty severe are you thinking of possible surgery in the near future or have you been able to keep your flares at bay with medications and diet?? I hope all the best to your and your family!!! :)

    1. Oh, Vicky, I wish I knew what to do.

      For me, as a fellow UC’er, I responded to Asacol and a diet change.
      But for my daughter, Shyloh, it seems nothing has worked…or if it started to work, it then caused problems else where (like pancreatitis).
      I’m willing to try anything , but like Shyloh said in the article, options are limited.

      I believe the SCD/Paleo/Gaps lifestyle diet with lots of raw juiced veggies is the way to go towards gut health. Being grain free/soy free/lactose free got my UC into full remission and my bouts with irritable bowel syndrome only occur when I start slacking (i.e. ice cream).

      When I changed my diet, I felt like I could exercise for the first time. Exercise helped me to continue to heal and strengthen, and have an outlet for stress…which I never had pre-exercise days.

      Now in Shyloh’s case, surgery seems to be the next looming option, if Methotrexate doesn’t work out for her. But actually, Shyloh’s GI Doc, doesn’t think she is severe enough for surgery. If we could just find the right treatment that works for her, surgery wouldn’t even need to be considered.
      Now, I did see Shyloh feeling much better when I changed to a strict Paleo diet. But she needs more than just a diet change; she needs that extra help. Like a miracle :)

      God has a plan for my baby, that I don’t doubt one bit. We just gotta take it one day at a time.

      I wish the best of health to you, Vicky!
      Thank you for your encouragement,

      –Kaila

      —Kaila

  13. Hi Shyloh,
    You are a very inspirational young girl! They say what doesn’t kill you makes you stronger and I believe for you, you are going to be one super strong girl by the time this is all over. Once you get through and beat this, everything else in life is going to seem like a piece of cake. Keep up the fight, we’re all pulling for you. Keep us updated and good luck!

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