My name is Dani and I am a YouTube video blogger. The people who view my videos only see me at my best, but there is another side to my life that I would like to share with you.
I am 22 now and have been living with Crohn’s for 9 years. I was 12 when I was diagnosed and it was a difficult process. I was experiencing diarrhoea and blood in the toilet and no one could tell me why, not even the doctors. Eventually, after being in and out of hospital, it was decided I needed a colonoscopy, which was scary enough, and I was diagnosed with Crohn’s disease. We had heard of this disease before but learning that it was incurable and that I would have to take medication for the rest of my life was devastating. At that time I thought this was just a bad phase: a few days in bed, eating liquid food, warming up with a hot water bottle – the shiny world of friends and chocolate shakes just outside, waiting for me. I was so wrong.
“We had heard of this disease before but learning that it was incurable and that I would have to take medication for the rest of my life was devastating.”
From then on I entered a strange world of bright white and flashing lights. For 2 months in hospital I was forbidden from eating or drinking and was fed through a tube. My symptoms were severe and we were considering a colostomy bag. To try and imagine what the bag would feel like I put one around my waist and filled it with jelly. I cried for two days and stubbornly refused the surgery. The list of medications that I had to take instead was only a little less difficult to handle and it was distressing to learn about all the potential side effects. I got pretty good at kneeling at the toilet in the middle of the night or ignoring the giant chunk of hair on the floor every time I combed.
“The anxiety that I have experienced as a result of having Crohn’s has, in many ways, been worse than any of the symptoms. I dropped out of high school because I missed too many classes.”
My family’s problems with IBD didn’t end with my diagnosis. My younger sister, Ashleigh, was diagnosed with ulcerative colitis when she was 17 years old. It broke my heart into absolutely the tiniest little pieces when she was diagnosed, knowing that she would have to suffer as I do.
The anxiety that I have experienced as a result of having Crohn’s has, in many ways, been worse than any of the symptoms. I dropped out of high school because I missed too many classes and assignments because of being in and out of the hospitals. That wasn’t all. Ashleigh’s dancing – her childhood passion – suffered as well. Experiencing all those nasty symptoms made attending dance classes impossible.
As video bloggers we know that social media can sugar coat a lot of things so we want to get the word out on how people with IBD can suffer behind the scenes. It’s such a huge community but it’s just not spoken about and I feel that it needs to be spoken about so much more.
“As video bloggers we know that social media can sugar coat a lot of things so we want to get the word out on how people with IBD can suffer behind the scenes.”
With your help, CCA can improve community awareness of the reality of IBD and make it easier for people to speak about the disease. I was lonely and confused when I was initially diagnosed. Often I used to wonder if there wondering if there were others like me. Of course, I can deal with the disease now but I know there are many young people like me who need support. It hasn’t been easy for us to share our IBD stories but I think it has been an important step for me and my sister. The support we have received in return has been truly heart-warming and I want all people with IBD to experience the same level of support.
Crohn’s & Colitis Australia have been a part of our family for quite a few years and helped us gain a better understanding of the disease through their support programs and services. It can be difficult dealing with IBD symptoms and their unpredictability while at school, and it is incredibly hard to share your problems with those who are not aware of IBD. CCA’s support services and Youth Empowerment Program (YEP!) offers hope and encouragement for young people facing their whole life with IBD.
“Crohn’s & Colitis Australia have been a part of our family for quite a few years and helped us gain a better understanding of the disease through their support programs and services.”
As a supporter of the IBD community, I would greatly appreciate your donation to CCA. I hope you will donate now as the need is rising and your generous donation will help everyone – patient, parent, partner, friend or relative – stay supported over the holiday season so that they can spend their time healthy and happy with their loved ones.
Your financial gift will change the lives of thousands of IBD patients for the better. Please remember, all donations over $2 are tax deductible.
Thank you again for all your support and I wish you a warm and happy holiday season!
Video blogger, make-up artist & CCA Ambassador
Should you experience any payment processing issues, please call Crohn’s & Colitis Australia on 1800 138 029 or email firstname.lastname@example.org.