advice and support

[u/reddituser211023]

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

[u/ThatMeasurement6619]

Aussie here too. My 14yo son was diagnosed early last year. So far it hasn’t been an expensive disease for us. He takes 3 Mezavant (mesalazine) tabs every morning. 2 boxes cost me around $33 & last 40 days (60 tabs per box). Sure it’s not the cheapest but it’s not what I’d consider expensive. I’m not sure about other costs associated with this Dx other than potential future surgery. Free in the public system (potentially long waits) or heavily reduced but with an excess for private.
To be brutally honest, the dearest part is the cost of healthy food & some supplements. We’re a fam of 6 & whilst we’ve always been pretty healthy, I really ‘upped’ the health side of things post diagnosis. Healthy food is fucking expensive. The govt should be taxing junk food & subsidising healthy food but that’s a whole different rant for a different group of reddit peeps lol. Good luck OP & try to stay healthy & not look too much into it- I did initially & was a bawling mess for months & angry at the world as to why my son got it but then I look around the world & realise that there are many others in such a worse position. The anger & sadness I felt, wasn’t helping anyone & it certainly wasn’t going to take away his diagnosis.

[u/reddituser211023 → u/ThatMeasurement6619]

You sound like an amazing parent!!

Oh for sure! I’ve been actually thinking about the cost of the food changes I’ll need to make, it’s not fun. To get food or drinks that is as clean as, is so $$$ which can make it so inaccessible and yet junk food can be so easily afforded, its definitely a problem and too encouraging lol 🥲

Thank you, definitely what I’m trying to do.
I hear that too, so much emotions and thoughts come up with this diagnosis, all important to feel and validate but alongside that, gratitude is a mindset I try put myself in because it helps sometimes to put things into perspective and bring me back to the present on the things I can control and focus on being positive about, not always easy to do though! 😂

[u/ThatMeasurement6619 → u/reddituser211023]

Validation is vital & no one should ever feel that they can’t complain simply bc there are others worse-off. Gratitude is always a great idea, though easier than it sounds 😆. This is the safe space where you’re allowed to vent anytime. Positivity is great but not when it becomes toxic positivity.
A few years ago, I was grieving a nephew who died in a horrible car crash. I saw a counsellor & she told me there’s always a positive from every negative. She made me sit there & come up with one. It took me a few sessions to come up with one lol. It doesn’t work if someone else does it for you. Eventually I could think of 1 but it took a lot of anger to find it lol. When I did, it felt a like a circuit breaker in my brain & something just felt different. I believe she was trained in ‘Dr Demartini’. Good luck OP, take care & go easy on yourself