Josie’s Story

Hello, my name is Josephine and I am 14 years old.

In 2010 my family and I went on trip. We drove our old caravan up to Airlie Beach and saw the Whitsundays. It was beautiful. But on the way up there we stopped at Byron Bay, that was the first time i remember being really affected by my bowel. I had not yet been diagnosed with Crohn’s, however i was spending up on an hour on the toilet. My family spent a lot of time waiting for me, they just thought it was a faze I was going through. We tried to put my toilet trips to the side and enjoy our holiday, but it was hard, I had to know where a toilet was at all times. When we got back 2 and a half months later I started passing blood. I didn’t think much of it and the bleeding stopped. Through the rest of 2010 I felt dreadful. I didn’t want to go to school because I was scared I would need the toilet.

One evening, my whole family were in the bathroom my sister and I shared (I don’t know why they were there!) I was doing a poo (as per usual!) and as i stood up to flush, dad saw the bowl was stained with blood, my blood. I hadn’t bleed like that in months, ‘what is wrong with me?’ I thought and I was scared. Mum rang our GP the next day and she forward us to someone from the Royal Childrens Hospital, unfortunately, he didn’t give us any answers. I was put into the hands of Gastroenterologist Professor Tony Catto-Smith. I immediately had a scope and it confirmed I had Crohn’s.  I had many other tests to check and double check it wasn’t something awful.

My family had no idea about Crohn’s so my mum and dad read every book under the sun about Crohn’s. They know all about it now.

We were sent home from the RHS and started medication. I had never taken a tablet before and i was so scared. Mum sat me down on a stool and said to me “Josie you have to take this pill” I started crying and so did she, mum knew i couldn’t and wouldn’t take it. Although the tablets were enteric coated, mum spit them into quarters and I would pock the pill in a spoon of yogurt and swallow. I hated it, but i knew i was sick, and had to take them. I continued on Salazopirine for a year, then came 2012, my final year of primary school. I still wasn’t getting much better, so i was put on Imuran. They were smaller and I could take them easier.

In April  my sister had a swimming competition ad mum was helping her get ready,  dad was at work, so no one was there to split my pill in half.   I had to take it, so i pocked the pill in yogurt and swalled, whole. I was terrified, but I did it for Amy, i was getting a lot of attention and no one even looked at her. I felt so sorry for her. I loved Amy so much, she drew me pictures while I was having MRI’s and blood tests. I was so grateful for her enthusiasm.

2013 bought on a new school and a new way of life. High school was very different from my primary school. As stressful as my first year of high school was, i felt good. This was a blank canvas and i could paint a new picture, not a picture of a sick little girl. Towars the end of 2013 I started blacking out. I didnt faint, my vision dissapered for a split second. Doctors thought it was my medication, so I was put on Meselazine, and with that came more scans. Amy drew me a beautiful picture of me in one of my scans, i have it on my desk. It showed me that she really cared about my health. Many months later, i was put on Meselazine enemas. they were unbearable, but i put up with them. They hurt me so much I would cry. Early 2014 i said enough, I couldnt bear the pain or the emarrasment any more. puberty was well underway and i wanted my own space. I stopped the enemas for 6 months, but another scope said I had bad imflamation in my lower large bowel. back on the enemas.

I have 3rd monthly blood tests for the imuran and in November 2014 i had low iron. not just low, very low. My levels were 8 and they were meant to be 50. I felt like it was all my fault, i had stopped the enemas and i had lost too much blood from it. I felt i was using all my parents money. I was stripping them bear. I kept at my medication as much as I hated it. I wanted it all to end, like it should. Another girl in my year was diagnosed with Crohn’s and she was so sick, I want her to know that i have had bad experiences too, but i dont know what to say.

Now it’s 2015 and in January i got suspected abcess. More meds and I felt awful. I had to take them at school and I would have to tell questioning people why. “Doctors think I have a hole in my bowel”. I know I must take good care of myself, especially after a friend of mine died from what i thought was bowel cancer, it turned out to be pancrease cancer. she was only 12 and was so beautiful. I want to stay well for her and to raise awareness of pancrease cancer in kids, even though it is extremely rare.

This sad event made me think of how lucky I am to be here and to live a busy life. with ballet, netball, drama and the school production. Im so lucky I am were i am now and I wouldnt be here if it wasnt for my family and friends. They support me every day and believe in whatever I do. Crohn’s has been a big part of my life since I was 10 and it will be forever just a little thing to live with.

One thing that I say to myself very often is ‘Enjoy Today’, because you don’t know what tomorrow will bring.

Find out more about the #IntoTheOpen campaign & how you can help kids like Josie

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