My Name is
Thank you to everyone from family, friends, healthcare
professionals and fellow ostomates for helping and supporting me.
My name is William Cusack and this is my story.
I was born on the 1st of October 1989 and during my infant years I suffered from bad constipation. During that time I had to drink medicine help me go to the toilet. As I got older I had more problems with my bowel, having to have surgery in 1998 to have skin tags removed.
In 1999 this is when my bowel problems got worse, every time I was eating food I was going to the toilet every 5 minutes and that's when my parents decided to take me to my local doctor to get blood tests done and around this time I was 11 years old.
One day I was in School when my parents had to take me to the doctor about my blood results and it wasn't good. My white blood cells were through the roof and the doctor presumed I had Leukemia and it wasn't something you wanted to hear at a very young age. During that year I had to go to Princess Margaret Hospital in Perth to have more tests and get admitted. During my stay there, I had countless blood tests and scans and colonoscopy's. During one Endoscopy they found a web in my throat and my large bowel was inflamed and ulcerated badly. My Gastroenterologist found out that I had Crohn's Disease. during that time I lost 10kg's and I was a stick…my Parents and I had no idea what Crohn's Disease was as we had never heard of it and at that time I was the youngest person to be diagnosed with Crohn's Disease.
After I was in hospital for more than two weeks, I was discharged and sent on my way home with hundreds of prescriptions for medication. I was on about 30 tablets a day, that ranged from Folic Acid tablets, Prednisolone 75mg a day and a large orange looking tablet. I was in school as well and I went back there to visit them for a day and the moment I walked up to the door I started crying as I was in shock as I hadn't seen my friends in ages. Three of them came out to calm me down and give hugs. These people were the best friends I could've asked for and my classmates all helped me through everything.
In 2000 everything seemed to be going well for me, but then it struck me again, back into hospital for more scans and colonoscopies. Medications were not working and I was getting sick of taking them every day. So me being silly and young, I would put my tablets down the sink in the kitchen… yes I know it was a silly idea at the time. During my High School years my health was alright, no major flare ups at the time but I could feel my body deteriorate as my white blood cells where trying to fight it constantly. I also got transferred to another physician called Professor Ian Lawrence. He wasn't a fan of me being on steroids so he started to wean me off them completely and put me on Imuran.
In 2005 my Doctor wanted me to try this new medication called infliximab, which is an IV infusion and takes all day. I was in Fremantle Hospital every 3 months to have this done but after a couple of months my body was getting immune to this medication. 2006 was my last year in high school and my health was great, during the last few months of year 12, I got offered to do a Heavy Duty Mechanic Apprenticeship on a mine site as I was so happy.
In 2007 I started my apprenticeship and I was enjoying it, but at the same time I was also looking after my gran who was on oxygen 24/7. On the morning of the 6th Of November 2007 I woke up ready to go to Tafe. I woke up that morning with a weird feeling knowing that something bad was going to happen and it did… I crashed my car into a tree at 7:30am in the morning. I was getting pushed into the back of the ambulance and I saw my dad looking in and he was crying bad… my heart sank as I looked at him. I was rushed to the ER in Bunbury Western Australia where they did scans and put IV's and a CVL in my neck. I still remember one nurse who was with me the whole time and never left my side. My whole family was in the ER with me… the scan results were bad and I had ruptured my large bowel on impact and it was weakened from the Ulceration from the Crohn's Disease.
So they rushed me to Bunbury Airport where I was airlifted via RAC Rescue Helicopter to Sir Charles Gardener Hospital in Perth. The blokes in that Helicopter made me feel relaxed and happy and no it wasn't from the morphine. The Pilot was talking to me via headset and when they wheeled me into the hospital… even though I never got their names, I would like to say thank you to them for making me feel so relaxed while I was so scared from what had happened. I have never seen so many doctors and nurses come rushing to me the minute they pushed me through those doors it was like an ant nest had being disturbed. After that night, I woke up 3 days later in a ward called NOOSA (which is a Nurse Observation Station where I had one Nurse to myself) I asked the nurse for the time and date and it was the 9th of November at 1:45am and I went back to sleep.
The next encounter I was going to have was going to change my life forever. I woke up and saw a bag on my right hand side of my abdomen. I asked my nurse what it was and she said it's a Ileostomy bag. I looked at her puzzled as I didn't understand what it was. The next day I had a stoma nurse come around to tell me all about it and to show me how to change my bag and look after it. The first time I changed it I was scared and had no confidence in changing it. During the first week after my car accident I started having nightmares about it and I would wake up all sweaty and scared. A councilor came around and talked to me about it and she said I had PST. During that week I had my drains, catheter and 50 staples removed. When they removed my staple,s my wound started dehiscing. My Uncle who was there with me, noticed this and alerted the nurse and a doctor came in and said it was fine. The week after I started getting high temperatures and my blood work wasn't good as my body was fighting an infection as they didn't clean me out properly and I was sent back into surgery for the second time. This time I came out with more drains and tubes than the first time. During my time in hospital, I lost another 10kg and I was in there for a month. I looked at myself in a mirror in hospital and I looked like a P O W… my bones were all showing and my face had sunken in. After a month, I was discharged and sent home. During my time at home I had to try and catch up on my Tafe studies, my apprenticeship and look after my gran. During my recovery I was getting sick from having an infection and it was the bad one… my doctor said I had Golden Staph Infection. Drainage sites where infected and my midline wasn't healing so I was going to the hospital every day to get dressings done and get my wounds clean.
Everything started to take its toll on me I was getting lonely and sad as I didn't have much support dealing with this. Where I was working, I had a lovely lady Called Glennyse who helped me talk about my feelings and what was going inside my head. It was during our talks that I told her that I contemplated about suicide as I just couldn't deal with it anymore. I felt alone as some girls would run away in fear when I told them what had happened to me and that I had a bag. I even snapped at my gran who had tried to help me through all this. I drove to my dad's house where I just broke down in tears in his arms as I told him I can't do this anymore. Once everything was healed I was back doing my apprenticeship and that's when I lost interest in doing it…I found it difficult to do most of the work with a ostomy bag and I couldn't do my duties properly.
In 2008/2009 I was in an abusive relationship with my ex-girlfriend. She would whinge about my bag leaking all the time and that's when I decided to have the reversal done in 2009. I went back to my Gastro Team in Fremantle where they looked after me very well and they decided to do the reversal operation. My Gastro team consisted of Ian Lawrence, Marina Wallace and Debra Marr. They made sure that I was comfortable and Marina Wallace was outstanding. When they wheeled me into the operating room, her whole surgery team knew I was scared and she came over to me and grabbed my hand and said "I will look after you and nothing bad will happen to you". I came out of theatre and the bag was gone and I was so happy I spent a week in Fremantle Hospital and was ready go back home. My mum and step dad came to pick me up and we were off, but I had to get some more medication to help my bowel heal and get used to be connected again. When I got home, my gran, aunty and uncle were all happy to see me. During my recovery my gran became really ill and was rushed off to hospital while I was asleep at home… she passed away a couple of days later. It felt like that she waited for me to come back home from my surgery.
In 2013 I got offered a job doing fly in fly out to a remote mine site in Karratha. I was driving 350 ton Electric Driven Haul Trucks for 6 months and during the last month, I was getting sick again as my Crohn's was flaring up. During that time, I was put on a medication called Humira where I had to inject myself with an EpiPen type device into my leg every fortnight to help my immune system fight the disease and during this time is when I met my future girlfriend, who has supported me in every way possible.
In 2014 I was struggling with the reversal… constantly buying pads and having accidents all the time. Plus, my Humira medication was making me have really bad mood swings every time the dosage finished. The start of 2015 I saw my Specialist at Fiona Stanley Hospital in Perth and I told him I was having troubles with my reversal and so he kept pushing for me to get this operation.
On The 17th March I went to hospital to have all my rectum and large bowel removed… so now I have a permanent ileostomy bag and I couldn't be more happier. The support I got from my family and friends was so great it made me feel better and more relaxed than when I had it the first time. During the recovery period, I was rushed to Bunbury ER as I had black blood coming from my midline and period looking blood coming from my former bum. The doctors and nurses there were shocked at what surgery I had and they couldn't do anything for it.
So I was sent home for two days and when the nurse came around to do my dressing, she told my girlfriend to call my surgeon as my health was getting bad… I was losing weight and was at death's door. We drove to Fiona Stanley Hospital that Tuesday morning where I broke down in front of my Surgeon Marina Wallace and Stoma Nurse Marlene McLoughlin. I told them I couldn't do it anymore and that I had enough. They both stayed with me and talked to me about everything and I was admitted into hospital again for a week. While I was at home, one of my good friends decided to take me for a drive in a Log truck and I was absolutely loving it as it has made me want to get my road train license and to hopefully start my own Bulk Haulage company… this is a goal for me to accomplish and achieve one day. I have made some new friends with Ostomy bags and they have helped me and they have encouraged me to tell my story to everyone. I have started my own Facebook blog and Instagram page to help and inspire people that you can do anything with a bag. I go to the gym every week and have made heaps of friends including my personal Trainer George, who has helped me go beyond my limits in the gym and turned me into a beast.
My advice to anyone with a bag is this " Only you can stop you". I do things that most people wouldn't do like drive scrapers on mine sites and articulated dump trucks. I currently work at a belt manufacturing factory in Harvey and I have had no issues with my bag with all the heat, as I put roll on antiperspirant deodorant on my skin before I put my base plate on. I love having the bag now and I hope my story inspires other to do their best in life.
Thank you to everyone from family, friends, healthcare professionals and fellow ostomates for helping and supporting me.
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