Hi everyone.
My name is Mathew Boyd-Skinner. I’m 33 years old and I now live with a permanent ileostomy named ‘Homer The Stoma’.
I have suffered with tummy problems since I was 8 years old. I had a scope at 9 and I was informed that I have ulcerative colitis. They tried me on very high doses of prednisone but when I went to a lower dose I was bleeding from the bottom end again. They decided to repeat the high dose again but the same thing happened again when I was on a lower dose.
I ended up in Westmead Children’s Hospital for two weeks because I was unwell. While I was there, a surgeon came to see me and I was talked through three major operations. When he left my mum and I just broke down into tears. I was a mess for a long time because I was so scared of what was going to happen. I ended up having a full colectomy. They took all of my colon and I woke up with a stoma then, as well, but I only had the stoma for 8 months. The stoma stayed while I had the operations and after the third operation I had j-pouch surgery and everything was back to some sort of normal. I remember going to the bathroom about ten times a day and that was my life until I was 32 years old.
In 2016, I felt a lump on my bottom and I was in a fair amount of pain. I took myself to the hospital but they just gave me pain killers and told me it was nothing to worry about. I went to my GP and he wrote a referral for me to go see a surgeon who had sat in on operations when I was kid. I went to see him and he wasn’t too worried either but he was only seeing private patients so he put me onto a new surgeon at RPA. As soon this the surgeon looked at my bottom he said you have fistulas and you need surgery sooner rather than later. I broke down into tears and I was a mess because I was at this appointment on my own with no one to cuddle or anything. I remember ringing my parents and trying to hold it together to tell them what was going on but I broke down in less than 30 seconds.
So, let’s fast forward a few years, I have now had multiple operations on my bottom for fistulas and I have seton bands in my bottom to keep the fistula tracks open.
I have tried two different types of treatment for the fistulas. I tried injecting Humira needles which I did myself at home. I was very unwell while I was using this treatment. It worked for only so long but it stopped working. My doctor then changed to a drug called Infliximab infusions. This was done at Royal North Shore Hospital every 8 weeks to start off with and then we went to every 6 weeks because I needed the treatment more often. Then the treatment wasn’t working as well as we would have liked so I went onto a very high dose and it was put back to every 8 weeks. While being on this treatment plan I got to go on the trip of a life time to New York City. What a wonderful ten days I had there. I was healthy the whole time I was there and it was the best holiday I have ever had.
Let’s fast forward again to November 11, 2021. 6AM was the time I had to get to Royal North Shore for life-changing surgery, for this was the day that Homer the Stoma was created. I felt very nervous and scared because I knew what was going to happen while I was there. Recovery was a bit rough to start off with. I didn’t accept that I had a stoma again for probably four or five days. I was getting upset because I knew there was no turning back now, for this was me for the rest of my life. The nurses and my stoma nurse were amazing. The support from them got me through and I was out of hospital a week after my life-changing operation.
Now, let’s fast forward again. I celebrated my birthday in December of 2021 and I had a couple of drinks because I deserved it! Then came Christmas and what a wonderful time that was. Now into the new year of 2022, life has been amazing since my life-changing surgery. I’m back on the stage performing in musicals again and in October this year I’ll be directing my first musical ever. To say I’m thrilled is an understatement, I’m over the moon because all my dreams are coming true and I’m healthy. To be healthy just doesn’t feel right at times because I suffered for so long, but not anymore.
So, its onwards and upwards for me and I’m going to make sure that more dreams come true in this life of mine with Homer the Stoma.
My mental health was really bad throughout this time. I had the support from my beautiful family and very loving and beautiful friends. There was one friend who never left my side during this six-and-a-half-year journey. This friend of mine would go on to spend hours with me at the hospital and taking me to appointments. They never gave up on me, even when I told them I wanted to give up and end my life. So, I want to say a HUGE thanks to the most amazing friend I could ever ask for and that I love you very much for all your support. I remember all the phone calls to my parents when I was crying on the phone all the time and just telling them that I wanted to end my life, how hard would that be for a parent. I couldn’t ask for a better family and I want to say a HUGE thanks to all my family for your love and support through this very rough battle in my life.
Thanks for reading my story. I hope you have all enjoyed reading it and please remember, spread as much awareness as possible.