18/05/2026
💜 19 MAY IS WORLD IBD DAY 💜
Today is World IBD Day - a day to raise awareness and understanding for the millions of people worldwide living with Inflammatory Bowel Disease, from Crohn’s Disease, Ulcerative Colitis and Bowel Cancer.
IBD is not just a “tummy ache.”
It is a lifelong autoimmune disease with no cure.
Crohn's is definitely not "is that when you have to watch what you eat?" That's about 1% OF IT!
It means living with:
💜 Severe pain, cramping and arthritis head to toe
💜 Extreme fatigue and unbearable exhaustion
💜 Urgency and unpredictable flare-ups
💜 Hospital stays, surgeries, medications and constant treatment
💜 Anxiety around travel, work and everyday life
💜 Smiling on the outside while fighting battles nobody can see
I was diagnosed with Crohn’s Disease in 2013 after years and years of ignored symptons and it has taken me through some of the hardest times of my life. There have been moments of pain, fear, exhaustion and isolation that most people will never see — because invisible illnesses often are exactly that: INVISIBLE.
The biggest thing people living with IBD need is understanding.
Please remember:
✨ If someone suddenly cancels plans, they are probably very unwell and have had an unpredicted flare up.
✨ If they seem tired, their body is probably fighting inflammation and have probably been on the toilet all day, for even weeks or months!
✨ If they need quick access to a bathroom, it’s not optional. We cannot wait! Crohn's waits for no one! You can go up to 20+ times a day!
✨ Just because they “look fine” definitely doesn’t mean they are.
"Tired" is an understatement. We are not "tired". We are chronically exhausted mentally, emotionally and physically and 10 out of 10 for pain being the worst is also an understatement. If we say we are "ok". I hate to say but we are lying. We are literally dying inside but the pain and exhaustion is so unbearable to burden loved ones with it's easier to just say we are "OK".
If you know someone like me, please understand that OK never means OK! We are lying through our teeth because our pain is our normal and there's nothing anyone can do other than try to understand and be patient.
A little compassion goes a long way.
Today, let’s help break the silence around invisible illness and remind those living with IBD that they are seen, heard and never alone.
Here at Jet Set Go! Worldwide Travel, I understand because this journey is personal to me every single day. 💜🦋
These pictures are of me having my infusion just yesterday which is a regular thing and takes hours to do. My old pic is from 2015 on a trip to Waiheke Island. You wouldn't know but I have a colostomy bag on. I was only meant to have this on for 6 weeks but ended up being a year which took me on a very difficult journey leading to severe depression and suicidal thoughts.
If this sounds like you or you are watching a loved one go through this, please know I UNDERSTAND. I GET IT. I KNOW THE PAIN. I KNOW THE SYMPTONS. I KNOW THE MENTAL TOLL IT TAKES. I KNOW THE IGNORANCE WHILST BEING LOOKED AT FUNNY FOR USING A DISABLED TOILET. I GET IT. I GET IT 100%. PLEASE KNOW I UNDERSTAND!!
I have pretty much being my own self advocate for Crohn's for a very long time and am a supporter of Crohn's and Colitis NZ and the Bowel Screening programme as well as Crohn's groups globally.
If this is you, or you are the partner of someone living with this, if you have lost someone to Bowel Cancer or have a child living with this. I respect you.
Last year I got run over and broke my back whilst smashing my head and incurring severe bruising and other minor fractures all over my body, all of which I still deal with today. I walked away from this alive and was back at work after 7 days because this kind of pain is nothing compared to Crohn's.
Crohn's affects every part of the body not just the stomach and bowel. I have spent thousands of dollars on my teeth previously because a cancer causing medication I was put on destroyed my back teeth rapidly!
Crohn's affects mental health and joint pain big time. Chronic joint pain is very exhausting. It affects your mobility and sleep every night. There are hundreds more symptoms that are no where near related to the bowel but they are known common symptoms.
I would also like to say Happy Birthday to someone for today who has been through it all since day 1, from the long grueling diagnosis, to emergency surgeries and simply holding my hand and being there whilst on the bathroom floor crying and actually dying inside. That's my Kevinator.
And to my kids (now 16 and 18) who have put up with this since they were very small children, the late night appointments at the hospital and getting kicked off the bog constantly over the years! No one should ever have to kick their children off the toilet. If you have two toilets in your house, please do not take it for granted! It is certainly not a luxury!
If you ever need a chat, pop into 58 George Street. The door is open. If you just need to be heard, I will listen because it is an incredibly lonely journey!
Also, R.I.P Palmy Gastro!
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