I was diagnosed at the age of 18. My mother was diagnosed at the age of 30 and was rushed to theatre to have emergency surgery. She was screened from the age of 15 and was never diagnosed with the condition. back in those earlier days they didn’t have the right technology information that they have today. The procedure that she had was where they left a portion of her larger intestine, having to go and be screened every 3 months and have the polyps burnt off. She had this done because she was too afraid to have the j-pouch procedure and have an ileostomy for 3 months whilst the pouch was healing. Well about 10 years after her procedure, she developed complications and ended up having to have the surgery to have an illeostomy for life.

I remember the day that I was diagnosed. Mum wanted me to get tested before she went into have the life changing surgery. I had just woken up from the local anesthetic and they didn’t tell me anything. I was tested at the same time as my sister. I remember mum picking me and my sister up- her eyes were red and could tell she had been crying. We got to the car and I asked her what was wrong. She looked at me and started crying. She told me that I had inherited the disease. we got home from what seemed to be the longest drive. My dad and boyfriend were at home- they were home when mum got the call- both devastated.

I went straight to my room and I think I cried for about 3 hours- my mum came in and talked to me- she thought I blamed her- truth is I didn’t blame her at all- fair call I inherited this disease from her but where does that become her fault? she said that when she was younger- she blamed her parents for doing this to her. But I couldn’t comprehend how it would possibly be her fault- she didn’t intend to pass it on to me. I remember my father talking to me- saying that we would get through it- he had been down this road before with mum and they got through it. I remember my boyfriend coming and crying with me- telling me he loved me no matter what. I couldn’t believe the words coming from his mouth- thinking how could you still love me when I have this disease.

My first appointment with my colorectal surgeon Matt Rickard- he told me about what was going to happen the best procedure for me- what would happen if I didn’t treat it- truth is, mum had already gone through most of this with me- she was the biggest help to me. I am so glad I had her- I don’t think I would have gotten through this with out her. my surgery was booked. I was set to have a j-pouch procedure, with a temporary illeostomy in 2 months time. I was scared, anxious, nervous, I didn’t want to do it but at the same time I wanted it over and done with. I could have waited a few more years to have the surgery- but I decided, I’m young healthy (reasonably anyway) I can get this done and start my life after this or I can wait a few years and then have to drop everything to have this surgery. I chose now. Well my mum went through her surgery that would mean she has an illeostomy for the rest of her life.

My boyfriend was such a support to me like would have never believed. Even though I had all this support- I still felt so alone, like no one understood me- I tried to keep every thing to myself for a while- until it just became too much. I confided in my boyfriend and he was so supportive. I remember it like yesterday- he cam home one afternoon and said to me- you wanna go for a drive?? I though he just wanted to talk to me about my condition- as it was affecting him to- it was going to affect the rest of his life too. anyway- we went for a drive through the city, and stopped under the harbour bridge. We got out and went for a walk. We stopped in this sheltered alter type thing. we were looking out at the ocean and the scenery when all of a sudden he said “will you marry me?” of coarse I said “yes”. That was his way of showing me that he wasn’t going anywhere. he wasn’t scared to go through this with me. He would be right by my side.

A month later, I went in for my surgery. When I woke up after the operation- I had a loop illeostomy. I woke up in the middle of the night- I remember asking the nurse- “do I still have a belly button?” she laughed at me and said I think so..?” In the next few days I met my stoma therapist. they help you shower for the first couple of times and show you how to use the bag how to apply it, which bag is right for you, as there is thousands.

At first I avoided her. I didn’t want anything to do with my illeostomy. I was scared of it. But she helped me, taught me how to change it etc. Anyway- after I left the hospital, I wasn’t coping with it all. I hated it- I was depressed and didn’t want anything to do with it. at this time my mum had had her permanent illeostomy surgery already. For the first 1-2 weeks I was at home, she changed it for me because I would just cry. then she just started assisting me. I had a few complications- skin irritations etc. then one weekend she went away for work. I was doing fine- was in bed ready to go to sleep- when my bag had sprung a leak. I was on my own, I had eaten dinner only a few hours before so the illeostomy was very active.

I was crying my eyes out because I couldn’t get the bag on (as I was using a 2 piece at the time so it takes a little longer. With the skin irritation I had- I had to use this barrier cream. This contributing factors only made my situation worse. I was in there for about 4 hours trying and trying- I was crying my eyes out the whole time. My fiancé’ knocked on the door many times and I told him to go away many times- but he kept coming back. I eventually let him in, but I wouldn’t let him look at the illeostomy. He kept assuring that he would love me no matter what- he just wanted to help. I showed him my illeostomy and he was surprised- he was a little shocked I think. but he stayed by my side and helped me persevere through it. I finally got through it and got the bag on successfully.

We sat up all night talking that night. I explained to him all about it. he was very interested. He was so accepting through it all- I though that he wouldn’t want me once he saw what I was going to look like after the surgery. they cut my stomach open from under my breasts to the top of my pubic area- going around my belly button. He was very understanding and supportive.

3 months later I went and had my reversal surgery- meaning the j-pouch had healed well enough to close off the illeostomy. I was so excited for this day- it couldn’t come soon enough for me. After it all I am very appreciative for all the support, love and understanding I received. through my mum, dad, fiancé’ and my doctors at Concord hospital. I cant say I’m glad its happened to me, but I wouldn’t be the person I am today if it hadn’t.

Not many people I know do understand what I went through- but I know there is a whole community of people going through the struggles I went through. I wont paint a pretty picture for those that will endure what I endured, it isn’t all sunshine and roses- its hard. But my advice is to persevere through- seek support from those around you- there are many people that can help and support you. please don’t think its the end of the world.

I am happy to talk to anyone that would like to talk to me about my story. whether it be questions of what to expect, advice etc. please feel free, I hope my story has helped at least one person.