Australia is behind the times - IBD

I'm frustrated.

In Australia, there is very little support or organisation for people with IBD. There is not even any statistics or data on people living with IBD in Australia. How incredible?! Even worse, there is nothing at all out there for ostomates!

The numbers do not add up for me

I was reading the other day that there are over 70,000 Australians living with IBD but that is the same number I've been hearing for years and years. It just doesn't make sense! They're saying that out of 24.6m Australians, only around 70,000 have IBD? *cough, BS*. That does not make any sense.

How many people do you know who knows someone with Crohns or Colitis, alone?! I would estimate at least 1 out of every 3 that I've ever spoken to.

IBD statistics in Australia

So I decided to google statistics in Australia. We have a Government agency that collects that stuff so surely that would have been collected, right? Wrong. No IBD data has been collected since 2006. Wow. That has got to change.

What about people who live with ostomies? Surely those stats wouldn't be hard to collate? Speak to every ostomy association and collect the numbers from them?! Remove duplicates? Geez, it's not that hard!

For ostomates in Australia, all we have are ostomy associations. They are there for the collection of our ostomy supplies and maybe a monthly meet up. So pre-surgery and post-surgery, all you have are extremely understaffed and overwhelmed stomal nurses to see. They don't have time to deal with general questions. So where can we go? Nowhere.

I have always noticed that there has always been a lot more of a focus on supporting the reasons someone requires an ostomy. Someone could have had an IBD, traumatic birth, cancer, car accident etc; there's no one reason. But the focus will remain on the issue leading up.

IBD and the ostomy journey

Sometimes I may seem dismissive of my IBD when I focus and talk about my ostomy more so than IBD, but this is because I want to highlight and shine a torch on supporting IBDers transitioning to this part of the journey, as smoothly as possible. Because, let's be real, generally it's not an if, but when.

I've been treated poorly in the past by IBD charities in Australia for that very reason. They only want to focus on the disease, but I feel this is way too isolating for IBD patients and so narrow-minded. IBD and ostomies essentially go hand in hand, and wouldn't you want to be supported in the entire IBD journey?

Hoping for change

I hope that the way we see the IBD journey will be expanded to support people who require surgery and that Australia will get with the times and be as open-minded as I see all the other parts of the world being! Who knows, maybe I'll be the one to change it? ;)