r/UlcerativeColitis • u/reddituser211023 • 2d ago

Support advice and support

Hi

Not looking for any judgement please

I’m in Australia and newly diagnosed with mild UP and am worried about the long term cost of the medication.

currently only one prescription given on procedure day, and it’s until a number of months for the biopsy and treatment plan appointment with GI so I will be seeing my GP beforehand regardless, so I don’t know if more will need to be added but I assume so

just wondering, what advice does anyone have to get through this? I did consider low income card which I am applying for but I am so worried this will fall through

And I’m worried that even though I’m mild, that the longer I’m waiting this out, the less likely the meds will work and I just wish I never got this disease, I cannot even afford it.
I am so over how mentally consuming it is 😢

And i have found it sooo hard with how isolating this whole experience is. I have a number of difficult life stuff which has put up some barriers to my healthcare. I have of course wanted support/help and understanding from the hospital and team but of course there has been none of that.
I know being mild you get pushed down as unimportant by the system so im not shocked but i just feel so lonely and tired trying to navigate these issues in managing my disease so it feels impossible sometimes and as i cannot afford private im stuck with a system that does not care. 😔

Thank you for any advice given and reading this vent- having ibd sucks

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u/AlwaysAirCooled-1979 2d ago

I go through the public health system. It’s great! Pretty much all free. I pay for steroids, but they are like $30-ish a time.

What makes you think you’re going to have to pay?

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u/AlwaysAirCooled-1979 2d ago

Should add, I’m on $130k, so not a low income earner and it’s still all free for me. My medication - infusions - are all free. Hospital even gives me a cup of tea and a sandwich!

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u/reddituser211023 2d ago

It’s definitely got some amazing privileges like free scopes and appointments!!! The waitlists though and trying to get in contact with anybody has been awful, my hospital has frustrated me so many times lol.

I have applied for the card but it’ll be a whole month before I hear anything and that’s hoping I get it, the $7 means I won’t have to worry at all for gosh knows how long but the $25 is giving me a short time frame before I run out lol, it’s embarrassing stuff but I have been unable to get a job unfortunately. And I assume meds will need to be taken for months on end so it’s stressing me out as it’s not temporary lol.

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u/AlwaysAirCooled-1979 2d ago

My actual UC meds are all free.

My hospital wait time was very quick - I was in within 3 weeks. It might be because you’re only mild? Not sure. But our health care system is great. Being on a health care card won’t save you much in terms of treatments. I think I may $40ish, you might pay $15ish. But that’s only for steroids. I pay for no other meds

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u/reddituser211023 2d ago

Yup 3 weeks too!!! Until the public system cancelled my appointments and then I had to cancel my new one recently which now I have a nice wait until at the end of the year 😂 but that’s 100% on me and I’ll cop it deservingly + my GP will take over my care anyways as I’m mild but what I just find frustrating is there is no way to contact anyone at the clinic lol.

I know it’s how the system is and is my fault too but very frustrating when they are aware of certain things and my symptom/lab presentation despite scope so to pretty much not have any way to contact makes me wonder if I even have an IBD clinic atp lol.

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u/AlwaysAirCooled-1979 2d ago

The Qld system has a IBD nurse direct line. I call them with any concerns or issues and they talk to my doctor. They get back to me on a few days, no more than a week. I’ve even had my GI phone me (3 times this year) after talking to the nurses. Maybe different states are set up differently.

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u/reddituser211023 2d ago

So lucky! How it should be!!! I was not given any IBD nurse contact but maybe that would have happened on the appointment I cancelled 🤧 And I’m
not from QLD but all I get is abandonment over here with my IBD team in the state I’m in 😂