My son Joseph ‘Joe’ Sutton was diagnosed with Crohns Disease at the age of 16.
He had emergency admission followed by hospitalisation for nearly two weeks with tests, scans, colonoscopies, blood tests and the list goes on before diagnosis. He had a mass tumour and perforation in his bowel. We were advised it was a ruptured appendix to cancer. This is a scary process for anyone to go through especially a 16 year old male.
Joseph lost a lot of weight rapidly prior and during the emergency hospital stay. He was very unwell. Upon diagnosis of Crohns disease, Joseph then had to be hospitalised again and underwent surgery to have part of his bowel removed and then reattached at the small colon.
Its a lot to deal with when you are at the start of your prime years, learning to drive, playing footy, chicks are awesome and you hang with your mates. Joseph took it all pretty well, never said too much and never wanted to have a fuss made about him. Joseph never spoke to his mates about his Crohns disease and what it meant to live with this disease. I know his mates would do anything to have their time back with him and would support him. He rarely complained to the point he would take himself to emergency when he was in a bad flare up (worried/scared) and not tell us. Didn’t want us to worry. He did have a fear of having to get a colostomy bag.
Joseph looked healthy from the outside, he was very witty, laugh of the party, class clown, the entertainer, counselled friends when they were going through hard times, played footy and was doing private flying lessons to become a pilot while working with his dad. He had it all, charm, looks, intelligence and a beautiful heart. He would try and maintain his normal life with his mates but he physically couldn’t.
We didn’t know enough about the disease at the time, while Joseph was keeping a low profile on it all, it seemed he had a handle on it with medication to keep it tamed. Its a very awkward age, especially amongst males to discuss their mental and physical health.
Looking back now and after over 5 years of reflection as his mum, I realise there were some signs. Over the period from diagnosis he had flat days and weeks but seemed to rest it out and he was back out the door again partaking in footy and social events. He was doing Italian language classes at night to maintain his Italian heritage to converse with his grandparents and relatives and completed his Deep Water dive ticket with night dives. He was my dive buddy. He had an amazing life.
Joseph died by suicide 2nd August 2013 aged 19 years old. It was an extreme shock and the most traumatic experience that I never want another parent to go through. My heart aches that he made a decision without giving us the opportunity to support him through that difficult time, he saw this as a way to end his pain and not be a burden on us.
Days prior to his passing, he become unwell, started to have a flare up, we were interstate up in Victorian Highland Country. We had been spoilt on the Gold Coast with a direct line to the gastroenterology nurse and having our own gastroenterology team available upon arriving at emergency. This was not the case here, Joseph was handling it his way as he had done many times before. Joseph started to lose his appetite, not uncommon when you are in flare up as everything that goes in must come out. He wasn’t sleeping very well (sleep deprivation is dangerous) and a bit agitated, anxious at times. His mind was in overdrive. The day before he was distant (this is when I believe the black dog had come to reside in his head) and seemed calm (but was going to the toilet a lot – when you are in flare up you do go to the toilet a lot up 15-20 times in a day). I never would have gone to bed that night had I thought my son was in any danger. That was the last time I saw him alive.
I have two messages I want to share
- REACH OUT – If you notice change in someone, reach out and ask them are they ok, what’s happening in their life, they don’t seem themselves, chances are they need to share their story and it could be the positive life changing conversation they need.
- REACH OUT – If you are going through some challenging times, feeling flat, overwhelmed, sharing what you are experiencing will take the weight off your mind. You cannot see past your thoughts and dilemma(s) on your own, you are fighting your mind and leave yourself vulnerable for the black dog to visit. Seek help, utilise the many support groups and help lines that we have available to us.
In honour of Joseph I started the Gold Coast Crohns and Colitis Support Group as a volunteer for Crohns and Colitis Australia. My main target group was young men, to bring them together to share with others going through the same or similar journey with the disease. Crohns and Colitis Australia now also have their own help lines run by Gastroenterology nurses and volunteers.
Talking about it, is critical in managing the disease as the mental side can very quickly take over when you are feeling so unwell all the time. I know this group has helped many people as they connect with each other and don’t feel so alone in their journey with Crohns or Colitis. This has proven how important it is to reach out and speak. We have been running for over 5 years now.
RIP My Angel – Joseph “Joe’ Sutton – 27/3/94 – 2/8/2013
If you are struggling or need help, check out our Get Help Page and reach out.