This guest interview comes from a young girl who didn’t let a Crohn’s diagnosis take away her strength and spirit. Read about how Crohn’s has changed her life, why she’ll never give up on her dreams, and her advice for other kids going through the same thing.

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GBM:  Let’s start by having you introduce yourself.

Shaye: My name is Shaye and I’m 11 years old. In September of 2012, I considered myself a very active girl – I was on an elite-level cheerleading team, playing rep soccer, on the diving team, and I had just landed a role in a Christmas pantomime (play). It seems like a lot for anyone, but this was a normal lifestyle for me. I love being active and being involved in things.

GBM: What is your diagnosis?

Shaye: I was diagnosed with Crohn’s Disease a few months after I started noticing symptoms. My diagnosis was in May 2013, but I first went to the doctor earlier in the year. My mom first noticed that I was acting and feeling different and she was the one that had me go to the doctor.

GBM: Tell us about what you were feeling, and when you first noticed you might not be your normal, energetic self?

Shaye: In mid-October of 2012 (Canadian Thanksgiving), I was starting to feel like I’d maybe bitten off more than I could chew. I played in a 6 game soccer tournament that weekend, and got knocked off my feet so many times that my coach benched me. I’ve never been benched before. By December, my mom noticed that I’d started to lose weight. I was already small for my age, at only 68 lbs. I had been hoping to gain enough weight to go zip trekking. The cutoff to go was 70lbs, and I was trying to gain those two extra pounds but I actually lost weight! At first, we thought it might be the stress of over-doing my activities, and we hoped that after Christmas, and after the play ended, I’d have time to relax and things would go back to normal.

In January, the competition season started for cheerleading. Normally I love pushing myself to be the best I can, but we started at 6 hours of practice per week, then added in competitions every weekend, and I just kept getting more and more tired. I had a tough time staying awake all day. I’d fall asleep in class or in the car on the way home from soccer or cheer. Everyone thought it was really weird because I’m really active. I started having stomach cramps, which I called “contractions” because it felt like my stomach muscles were flexing and unflexing without me doing it. I also started eating less, even though I was hungry all the time. My mom has Colitis, so she knew it was time to see a doctor.

GBM: Tell us about your diagnosis. Was it scary? How did you handle it?

Shaye: It took 5 weeks to get an appointment with a pediatric gastroenterologist, and I lost even more weight by then. The doctor took one look at me and thought it might be Crohn’s. I didn’t really know what it all meant. They explained things to me but really, all I wanted to do was sleep and feel better.

Before I got scoped, the awesome doctor and nurses were really nice. They explained what was going to happen and asked me lots of questions. It was definitely not fun, but nothing compared to what was coming. If someone had told me how awful the cleansing would be during my flare up I think I would have cried. There was nothing worse than the day before the procedure. NOTHING! I spent the entire day on the toilet. My mom sat with me and we almost finished a whole book by Roald Dahl! Worst Day EVER!

The day of the colonoscopy/endoscopy it was confirmed I had Crohn’s. The doctor said that my colon, ilium and rectum were all very inflamed with the disease and they started me on Prednisone within hours of waking up.

GBM: Now that you’ve been diagnosed for a while, do you understand it better? Do you have any advice for other kids to understand what’s going on in their bodies?

Shaye: I definitely understand the disease better. Even though it drives me mental, my mom is always on me about eating right. I haven’t had popcorn since the diagnosis because I notice, right away, that it doesn’t feel good to eat it. I have to take meds 3x/day and if I don’t, I notice symptoms. I can see how the diet and meds keep me feeling better so it motivates me to stay on track.

I have to explain Crohn’s to my friends all the time and what I tell them is that my stomach has blisters in it (I know that’s not exactly right but not many of my friends know what a colon is yet, I think that comes in high school science) The blisters take up too much space and don’t allow food to pass through. When the blisters are bad, I can’t eat and I can’t get anything from the food I am able to eat (like Boost). When I can’t get anything out of the food I get really, really tired. Oh, and I tell them that I can’t really help it if I’m gassy and they can just deal.

GBM: That’s a pretty good way to explain it to other kids! Next question, what is the hardest part about having Crohn’s?

Shaye: The hardest thing was being on Prednisone. I knew it was helping me but it made me really puffy and made my hair darker. I’ve always been really fit, with a 6 pack stomach, from all my activities and the meds made me look really different. Especially my face. The thing is, I don’t think anyone noticed it as much as I did. I’ve been off Prednisone for 2 months now and everything has gone back to normal, I look like me again.

“When Shaye was very sick and 50lbs she turned to me and said “You know, people all have something they have to deal with. This is just my thing. This could be so much worse. This I can handle.”

That’s when you have to try not to burst into tears in front of your kid.”

-From Shaye’s mom, Jacquie

GBM: What has been the most helpful thing throughout this process?

Shaye: I think talking about Crohn’s and finding out that almost everyone knows someone else with it was really interesting. My doctor and nurses at Children’s Hospital in Vancouver were also amazing. They talked to me like I was an adult and it made me feel good to know that I had some control over how I felt. Cheer, my team and my big sister have also been amazing. No one treats me differently. I’m expected to pull my weight and I like that.

 

GBM: Are you feeling better now?

Shaye: Yes! It took about 3 weeks on Prednisone for me to gain my weight back. Disadvantages of Prednisone: acne, super puffiness, all my clothes were suddenly too small. Advantages to being on Prednisone: let’s just say, I grew a bit in some places.

After those 3 weeks I was able to get back to cheer. I was so happy to be doing something again. I’d missed 6 weeks of school and even more cheer and I was just so happy to be back to “normal”. But I had to work a lot harder at cheer than before. The new weight made everything feel different and I had to earn my spot as a flyer back (I get thrown in the air).

GBM: Why is this team so special to you? Why did it mean so much for you to get back to cheer?

Shaye: My big sister Layne is on the same team as me and I love her so much, it’s so fun to be on a team together. Also, this is a senior team. It’s the first time I’ve been a senior! It’s also the first time I’ve made a level 3 team. Level 3 is tough to make, I’m so proud of myself not just for making it, but for making it despite having Crohn’s Disease!

The best part about this team is that we’re trying to win a bid to the world championships of cheer called Summit, in Orlando in May. If we make it, Orlando will be the 1 year anniversary of my diagnosis. How cool is that?

GBM: Do you think anything good has come out of your experience with Crohn’s Disease?

Shaye: Hmmmm. It might sound weird but yes, there are some good things. Crohn’s puts other parts of my life in perspective. If a kid at school is mean I don’t get quite so worked up about it anymore. The things that used to really bug me don’t as much. I’m also much more aware of food. My mom and sister are health nuts and I’m always the one looking for chocolate but now I know about GMO foods and gluten free and quinoa (not my fav). I know more about how my body works and I’m learning about things that can make Crohn’s worse like stress. Those are all good things to know.

GBM: Tell us about how your mom helped you through all of this. You mentioned she has Colitis? Do you think that helped her understood what you were going through?

Shaye: My mom was diagnosed when she was 23 and has been in remission since she got pregnant. She knows a lot about Crohn’s and Colitis and even worked for the Canadian Crohn’s and Colitis Foundation. She is very, very supportive and really helps me think about my choices. She never makes me eat something or not eat something but she explains how it might feel to eat it. She also won’t let me use Crohn’s as an excuse. If I make a commitment, I have to stick to it like always. (within reason)

GBM: What is one piece of advice that you’d give to another kid who is going through a Crohn’s or Colitis diagnosis?

Shaye: I want to tell kids that a Crohn’s diagnosis doesn’t have to slow you down. You can manage it and learn to live with it and you shouldn’t be afraid to tell people about it. Every time I tell someone they have a friend or parent or cousin that has Crohn’s. My sister and I made a video about Crohn’s and we’ve been sending it to Canadian Football League cheer squads. The other day one of the BC Lions (FELIONS) cheerleaders wrote to us to say her dad had had Crohn’s and she watched him deal with it all her life. She said she was really proud of me for my “kick butt” attitude and that she found me inspiring! A professional cheerleader found ME inspiring! Other kids should know that they can do anything. Crohn’s is a pain in the butt ? But its not the worst thing that could happen.

GBM: Thanks, Shaye, for sharing your store. You are definitely a strong girl with lots of perspective. We know your story is going to inspire other kids!

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Shaye and her sister Layne have an awesome video, and a supportive Facebook group called TribzSibz. They call it a group about Crohn’s, cheerleading, and “where kids can come and talk about their dreams too”. You can also support them through their Cheering for Kids, Kicking Crohn’s Butt Indiegogo campaign, which is helping to cover the costs of (hopefully) going to World’s. Best of luck, Shaye!