Sydney's Story

There are so many things to know about Ulcerative Colitis and Chrone’s. It’s so overwhelming at first. The first year is always the hardest, but you can get through it. Follow your treatment plan with love and you will slowly start to live a brighter, fuller life. It’s not the end of the world, but it certainly does feel like it. In the first couple of months of your ordeal, my one piece of advice would be, “Be Open Minded.”

Our daughter was diagnosed with moderate to severe UC a couple of months before her 4th birthday. It was absolute HELL! She was hospitalized twice, once for 9 days, and then 3 months later again for 3 days. I have learned how to listen, be calmer, be open minded, and follow what works. If things aren’t working for you don’t get discouraged. Move forward, and speak up. Don’t be afraid to call the doctor, and don’t fool yourself into thinking it will just go away, because it won’t. If you run from the disease it will chase you down and wreak havoc in your life, but if you tackle it, it will slowly give in, hopefully. You have to decide whether you want to win this fight. Embrace what works for your child and do not linger. It took about a year and a half to get our daughters UC completely under control, and she hasn’t had any real symptoms in over a year.

If you have a diagnosis then you are half way there. Embrace it, don’t run from it. Do what you have to do to get your child better, and living a fuller more complete life.

Our last visit to the office was to see Tywanna for Remicade one week ago. When Sydney’s dad came home from work he said, “so how did it go?”, and her words were, “It was amazing!” That makes us very happy!

One of the first things that I remember Dr. Al-Tawil saying to us was, “The good thing is that you are here”, and I thought to myself, “NO, that’s the worst part of it all!!” But he was right, and now he’s like family to us. So I just hope that you can make it easier on yourself and your child. We try to make the most of it now, and she doesn’t care, because she doesn’t want to be sick again.

 


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