“My survival was due to the infectious love of a puppy, a wonderful partner and a great family.”
One thing I have never told anyone, because people would think it a bit corny, is that moments before my canine friend Monty passed away, I promised him that his life would not be in vain. He, for the first time in three days, raised his head to look at me and took his last breath. I interpreted that as, “I’ve done all I can for you Dad, the rest is up to you”.
I intend to keep that promise.
Monty, my little Jack Russell cross Cavalier King Charles terrier was the companion who brought joy to my life during the times I was recuperating from operations. He was such a character and seemed to always know when I needed cheering up. He was a comedian and he made me laugh more than anyone I have ever known. We had an unbelievable bond.
“Ken was being a typical macho male and never once leaked a tear with all his pain. The only times I have seen him cry was when we lost Monty and on occasions when he recalls Monty’s last moments.
“As Ken said once, there was more pain involved in losing Monty than there was in all the years living with Crohn’s disease.”
– Denise Morris, Ken’s partner.
I was 51 when I was diagnosed with Crohn’s disease in 2003. There was no-one to talk to about it, mainly because no-one wanted to talk about it. Most of the information I learned about IBD was gleaned from my sister who, if she was gifted enough, would have found a cure for IBD. My diagnosis came about from a colonoscopy performed by a doctor who perforated my bowel. When I rang him the following day, asking if the pain I was in was normal, he hung up on me. I talked to other doctors about this doctor’s negligence and all I received in response was, “it happens”.
“This failure to pick up and treat his condition earlier and the specialist perforating his bowel during his colonoscopy meant I had little confidence in doctors’ treatment of IBD. I felt I needed to do all I could to understand the condition for myself.
“I couldn’t take away this condition he was coping with, but I could read as much as I could find and pass on information I hoped might help.”
– Di Campbell, Ken’s sister.
Four days of visits to the ER and being sent home still in agony, was enough to tell me that those medical staff were not qualified to make decisions regarding gut problems. By that time, I had a very high fever, bad shakes, was convulsing in pain and getting to the stage where I began to hallucinate from the trauma of my perforated bowel.
Crohn’s & Colitis Australia is invested in improving the quality of care for people with Crohn’s and colitis so that no one has to go through what I experienced. One fifth of people living with Crohn’s and colitis are entering hospital every year via emergency or unplanned admission, so understanding what patients need in those situations is vital.
By donating to CCA today, you are helping to ensure that they are receiving the appropriate care.
Luckily my partner managed to contact a specialist, now retired, named Bill Bye who immediately organised a rushed operation. As it was relayed to me later, Bill’s quick thinking saved my life. Bill and I still keep in contact and I am happy to say that my letters to him start with Bill Bye and end with Bye Bill. After three additional operations (one due to a prolapsed bowel, which I had never even heard of), carrying an ileostomy and colostomy bag, and a promise of more operations to come, I fell into a very dark place. At that time, I had made my mind up not to carry on with the torture.
The turning point came when an acquaintance of my partner, delivered into my hand at 5.30 one morning, a five-week-old puppy. I had a purpose then. I was determined to finish the operations for the sake of my little Monty, who I fell in love with instantly.
In the early days after the operations, I would have had, out of ten, eight good days and two bad days. It went quickly to six and four, then to five and five. In 2017, I was experiencing zero good days out of ten. Looking back, a good day was when I only visited the toilet 12-14 times per day. A bad day was roughly 26 visits.
During that time I also returned to work and spent the next ten years trying to do my job, truck driving. This was a job I loved but it soon started to become difficult because of the constant toilet breaks. I applied for the Disability Support Pension (DSP) in 2013 stating that I could no longer drive a truck due to faecal incontinence. That was knocked back with a suggestion that maybe I should change jobs and try truck driving or courier work. Clearly my application was never even read before it was rejected.
I started Newstart in May 2015, doing small hours just to get some money in and then applied again for the DSP in January 2017. A week after a very cordial interview with an independent doctor, I received an email to say my Newstart had been cancelled. Another email followed stating that my health card was no longer valid.
In life there is a parity line where all things are equal. North of that line is joy, exuberance, heaven, happiness, jubilation. South is depression. Those two emails had the capability to send me south, but then a third email arrived saying that the DSP had been approved. It would have been nice for them to start with that.
Depression is a life game with similar rules to the board game, Snakes and Ladders. You can slide down south so very fast, but it takes a very long time to claw your way back up north. When you have depression, you learn to be a great liar and a fantastic actor. Thinking along those lines, maybe all politicians suffer from depression.
“I only found out about Ken’s depression one month ago. He has kept it hidden all this time. He now feels it is the right time to talk about it. He is still troubled, but is keeping his promise to Monty, and that is one thing he would never betray.”
– Denise Morris.
The DSP helped financially, but not so with my health. My health continued to deteriorate to the stage where I was housebound. Suffering from faecal incontinence, short term memory loss, insomnia, skin cancers, lethargy, decreased mobility, constant headaches, very severe stomach cramps, (where I laid curled up in bed with a bucket beside me on the floor, vomiting from the pain. These cramps would last up to 48 hours), mood swings and of course, we can’t forget depression. All which can be attributed to my Crohn’s or side effects from my medications which are too numerous to mention or even remember.
It was Monty who made sure I didn’t have time to slip below that line. I believe that Monty found his way to me for one sole purpose. To save and help me. Monty died 18 months ago, but I still miss him to the point where I tear up over him at least twice a week. When he left me, he took a small piece of my heart to keep with him until we see each other again.
Now, when I read about the statistics concerning the suicides and mental health issues related to younger people inflicted with IBD, I know that I have been one of the lucky ones. 1 in 2 people living with Crohn’s and colitis struggle with psychologically distress, which has a significant impact on disease severity and recovery during remission.
People must realise that I, along with countless thousands of others, did not choose depression. Depression chose me. It is not a weakness, it is an affliction.
“Ken accepts his condition but I still, to this day, feel very sad that there are close members of his family who have no idea how difficult everyday life can be for him nor do they make any effort to understand the disease itself and its impact on daily life. This is my great sadness as Ken’s sister.”
Some people have said I’m courageous for revealing my life living with Crohn’s disease. I can only say that I gained all my inspiration for sharing this story from a poem written by young Alexandrea Rossiter published in Inside Insight Summer Edition 2018. She is an absolute champion.
The Beast Within
By Alexandrea Rossiter
The Beast inside lies silent,
Eyes closed within its lair.
Today it seems quite happy,
But tomorrow it might flare.
When calm it is no problem,
Life goes on as it should.
But poke The Beast and you will see,
The chaos is not good.
On most days The Beast is hiding,
Its existence can’t be seen.
It’s only when you look inside,
You’ll see where it has been.
Some days The Beast awakens,
Attacks at its own will.
Won’t whisper when it’s coming,
But life…..it goes downhill.
When The Beast is angry,
It eats me up inside.
Tearing chunks and burning holes,
There’s nowhere I can hide.
Just ride it out and sleep it off,
Until The Beast is done.
Still, quiet and resting…
And life again is fun.
I like to keep it hidden,
I don’t share The Beast with all.
I only share it with my friends,
Who’ll catch me when I fall.
The Beast who has been nameless,
Can finally be addressed.
Crohn’s Disease is “Beastly”,
But won’t stop me being my best.
I applaud CCA for the work they do for people with Crohn’s and colitis. They do this with very limited funding, instead depending on donations and fundraisers.
That is why I raised $4396 for CCA by completing a 200km walkathon wearing a leg brace and using a walking stick (after tearing my medial ligament and meniscus).
I’m hoping the funds raised from my walk will enable CCA, in some small way, to help those young ones, who maybe don’t have the close family resources that I had and still have. Or a puppy, who will listen attentively to all your troubles, and cure almost anything.
“I was so proud of Ken doing his 200km walk. He is a determined, generous, caring person and his walk, with a knee brace, was certainly evidence of that. I love him to bits.”
Your donations and mine will fund CCA’s support services like Camp Fearless and YEP! which provide important experiences and encouragement for young people. As I personally know, it takes a lot of courage and support from others to not only speak about the physical side effects of IBD but also the mental burden that often comes alongside the disease.
This holiday season, while others are looking forward to annual leave or school holidays, people with Crohn’s and colitis are hoping they remain in remission. They are wondering if they’re going to be able to eat with their family or if they will be in hospital. Today is a chance to participate in the giving season a little differently. Show your support for the brave people fighting this oppressive disease and donate to CCA.
A big thank you for all your support and I wish you a terrific holiday season!
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