19/05/2024
WORLD IBD DAY. Or happy purple day as some call it. :)
This day is really special to myself and my little family.
I stepped out my comfort zone last year and wrote a little about my crohns story for first time in 23 years but feel like i should open the story even more and get awareness out there even more.
I feel like its my life mission tbh in a weird way I feel obliged to do for those that don't have the strength or need a voice out there.
I'm usually pretty quiet and brush off with "I'm ok I'm fine" but honestly that's very far from the truth especially the past 8-9 months sadly.
It's time to open up say "im not OK" and share my story a little more for those who wish to read along. I'll keep it short...ish
I was very sick from age 15 and officially diagnosed with a disease called Crohns which back in 2001 no one including me has a clue what it was
It forced me to leave high school due to having my 1st surgery within a few months and about 12 trips in out hospital within the 1st year.
I had 3 foot of my small bowel removed and underwent a resection.
I had another few surgeries the years followed to repair tears and fix damaged sections of my bowel. I was always unwell 80% of time but still started my working career from age 17 onwards.
In 2010 I had another major surgery removing my entire large bowel (colon) and having to live with an ileostomy bag for several years. This was one of the most mentally and physically hardest surgery and times I had endured.
25 years old and having a stoma bag attached to you not knowing if for life or for few yearscand all the complications it will cause me on the future.
2010 -2013 I had another 10 surgeries to repair tears and damaged sections again.
And around 20 admissions into hospital for days to weeks at a time.
At start of 2013 I had a emergency ambulance trip to hospital which lead to P*P pneumonia and a septic arthritis infection in my hip. I got a blood clot in my left leg also which took 11months to clear. Still there to this day tho.
So I was on crutches and walking stick for Elis birth and first 6 months of his life. Pretty tough on everyone at that time too.
In 2015 I unfortunately had another major surgery to remove more bowel and close up fully resulting in my ileostomy bag being a life time thing with no return.
This was a really emotionally tough surgery to deal to date as Madi was close to being born so I was trying to get completed to not impact her as I wasn't able to achieve with Eli sadly.
Plus this was any chance of me returning to "normal" function wise and tbh just feeling confident as a man and a person ever again.
But it was ultimately needed and out of my control in any hope it could be delayed or any other way was not possible sadly.
Since then I've had alot more surgeries and trips to hospital and that will always be the case with crohns disease.
I've had life long complications arise since 2016 - now as my crohns has irreversibly damaged alot of my body since then
AVN in both my ankles. 2018 I had my left ankle bone decompression surgery to try help repair the AVN. Which was unsuccessful and left me with a worse limp now and crohnic pain also.
Just last September 2023 it was the right ankles turn. I had a bone shaping, shaving and nose graft surgery to try get more movement and slow the AVN down
Sadly this was unsuccessful also and actually revealed that the ankle joint had collapsed, with no cartridge, severely arthritic and was in need of ankle fusion same as the left previous.
The hardest part and toughest part is how I've become now after following thie last surgery my body just didn't cope after all these years of getting wacked and really struggled with malabsorption and keeping kidney liver and mineral, vitamin levels good.
I am goin on 6 months now of constantly being dehydrated with getting ivs in hospital either once or twice a week to repair. My kidneys have suffered the most with going into chronic kidney disease now and working with Nephrologist closely to try keep me functioning on a daily basis and live with the issues it's caused.
It's been pretty hard to hide I'm not well lately with so much weight lose, not working past 9months and looking very different too haha.
Im just past 24 years of living with crohns now and adding it all up ive been admitted to hospital more then 50 times (6x by ambulance), 28 separate surgeries to date, 3 foot of my small bowel removed, my entire large bowel removed, left ankle drilled out to repair bone, right ankle bone shaping and shaving, Avascular Necrosis on both ankles and my left hip, osteoporosis in my lower back, spine and shoulders, arthritis in my joints, chronic pain, dehydration and malnutrition due to short bowel, 1000+ injections, hundreds of meds per week. The list goes on.
I'm not sharing this for any sympathy at all, more for awareness and to hopefully help others in need. Not just crohns related, it can be other diseases or battles ppl face.
Distraction and positive things in your life is no 1 for me and how I deal so I'm hoping I can be that for someone else too.
I have a beautiful lady who supports me in everything, her beautiful girls which I adore and my Eli Madi team that are my everything.
The kids sport, volunteering to help them and other kids grow, great business crew helping me daily to provide for my family, great friends (new and old) and there's a always somewhere to get a coffee and bite to eat so ultimately at the end of the day I'm pretty lucky really and thankful for alot if good in my life.
So whatever your hard times are and bring you down daily keep pushing thru and beat whatever it is and find those little bits of joy even as simple as a weekly coffee date with a mate is so important more then you would know.
IBD day is a special day to just acknowledge and say hey I'm not OK deep down but im doing a bloody good job considering and am proud of myself and all those that suffer day in day out also.
Anyone wants to reach out, needs help, needs a coffee and a chat please msg or call me 0438 566 111
Take care guys
Cam :)
