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Crohn's Disease Forum

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rollinstone

rollinstone

Joined
Dec 14, 2012
Messages
1,271
Hey guys, just wondering how many pals Ive got from down under, I'm in QLD, I know of dusty, ozboz and moe, oh and Aussie. Anyways, this thread is for all the Aussies to touch base
 
G'day, my wife is in Qld, currently in hospital, has severe Crohns. Have been away from the forum for a little while, but will try to get her hooked up to the net. Cheers.
 
I am in North West NSW. :)

I know there are quite a few others here from Oz...Stefan, Catherine, upsetmom and more !
 
Hi I'm Michelle from Sydney!

I have learnt so much from you guys alrady!

Thanks for letting me take part!

Michelle

Diagnosed with Crohn's December 2011 - don't have time to give my long winded story, but will get to it. Currently flabagasted at B12 reading of under 100 - explains a lot of symptoms but seriously annoyed they didn't flag it before now!
 
Echuca Victoria here. Hey guys how lucky are we? I'm reading all of the insurance issues the guys in other countries are having. Wouldn't swap them for our system.
 
Northern beaches of Sydney. Wow, I didn't realise there were so many Aussies on here. Jaano (from SA) is another and also Susan2 from I think Geelong.
 
I don't think it will be too long before we can stage a coup and take this forum over! (instil evil laugh here).

Dusty. :voodoo:
 
annawato said:
Northern beaches of Sydney. Wow, I didn't realise there were so many Aussies on here. Jaano (from SA) is another and also Susan2 from I think Geelong.
Click to expand...
Thanks for the tag, Anna.

Yes, I am from the coast out of Geelong - between Barwon Heads and Torquay.
 
Johnwc said:
Echuca Victoria here. Hey guys how lucky are we? I'm reading all of the insurance issues the guys in other countries are having. Wouldn't swap them for our system.
Click to expand...
And we ostomates are certainly lucky to have our government stoma 'appliance' scheme. :thumright:
 
Will be in Australia (mostly Melbourne) for about six weeks, around December this year. Not an Aussie, but I can't wait all the same :D
 
I can't wait! I've been cooped up for far too long and need to stretch my (travelling) legs. The price of beer is a worrying factor, but I should have some money saved.

I'll hopefully be using some of the holiday to do a bit of travelling around the rest of Oz so I can see the sights too.
 
Good luck with your colonoscopy missy_moo!

Jam, I lived in the UK for 18 months and when I first got back to Oz I nearly cried at the price of beer! You'll have an awesome time though!
 
Gold Coast, qld, waiting on diagnosis (Thursday hopefully) - this forum is great, and nice to see so many locals :)
 
Gold Coast, QLD

Diagnosed '94. 3 x resections. Truck loads of drugs. Going on Humira soon.

Good luck on the diagnosis Jen.
 
Hi Dusty, I'm going to have to learn to use those emoticons as well as you do - very cool!

Hi Outlaw, would you have a recommendation for a GI on the coast or in Brisbane? I used one I had used previously for a coeliacs endoscopy, and I believe that's his area of interest, not IBD. (Some of the things he said, both in person immediately after c-scope and e-scope, as well as in initial report, were somewhat puzzling.... We'll see what he says after pathology etc). Good luck with the Humira, Enbrel has been amazing for my arthritis :)
 
Dr. Galib Ali diagnosed me originally and is still in private practice at Pacific Private opposite the GC hospital as far as I know.

Been treated since my last hospital stay about 5 years ago by Dr. George Ostapowicz at the GC hospital. He is the best specialist (or even doctor) I've had in my life. No exaggeration.
 
Last edited:
Thanks for the well wishes!
The colonscopy went well! Waiting on biopsy results but it seems I have proctitis. Still a bit confused about what exactly it is and how it will be treated but I guess I will find out soon when I see my surgeon! :)
 
JenGC- I'm on the Sunshine Coast. I see a professor in Brisbane (just changed docs actually so I've only seen this guy for 3 appts so far) whose focus area is Crohn's disease. I have found him to be fantastic so far. Professor Timothy Florin- he is the the head of gastroenterology at the Mater.
 
Is prof Timothy open about new meds? Iv been thinking of visiting someone who specializes in crohns, my GI is pretty awesome, so far he's been great, but he's very much traditional, I want to visit dr Borody in Sydney, he's at the forefront of some alternative crohns treatments, most notably anti-map treatment which is extremely successful in certain crohns patients
 
Ooooh Joshuaa you have me intrigued. Excuse my ignorance but what is the anti map you refer too? And I've not heard of Dr Borody- can you tell me more about him/her?

I was finding that my poor old body was becoming prednisone dependent so Florin has put me on Mercaptopurine. He seems to think this is the best way to go so perhaps he's a traditionalist too???

I tried Imuran a few years back but my liver didn't like that one much!! I have never liked the idea of taking immunosuppressing drugs but after surgery last year to remove a particularly nasty obstruction, I sort of admitted defeat and started the 6mp!! So far, it seems to be going ok. So far....!!!

So do you mind if I ask who you were seeing on the coast?
 
Not at all, I'm seeing dr walker, and I actually asked him I could switch from
Imuran to 6mp today, as iv been gettig nauseated from imuran, (although it has been working great). Anti-map treatment uses 3 antibiotics to fight off against MAP infection which has been proven via Koch's postulates to be a causative of crohns disease (although not the cause for everybody). I dont know enough about it to go into depth but if you type in anti-map or dr Borody in YouTube there'll be some videos which will explain much more in depth.

As for Dr Walker, he is great, he's really busy though, has aaaaalloooot of people seeing him all the time.
 
Only a new diagnosis huh? It's a bugger of a thing isn't it?! I was dx in 2007 but had been seeing Melissa White (Gastro in Buderim) since 1999. It took that long to get dx'd!!! I decided not to go back to her after I saw her in Jan this year- I won't go into the reasons publicly but will happily share in a PM if you're ever interested!

Are you happy with Walker? I was keen to see Florin as I know he's done a lot of research into crohns and written over 100 documents on the disease. But it would be nice to have a GI who's a little closer to home!!!
 
I am happy with him, definitely sucks to get the diagnosis, but I'm in biochemical remission at the moment so things are looking good, I've had a tough few months getting here but I'm optimistic (mostly) about the future, iv read of some poor people's struggles on here and i really feel for them, I'm lucky I'm responding well to meds, my crohns was considered mild so we're hopeful itl vanish as I reach round the 3month mark of 6mp (been on Aza for 2 months). I'd love to know why you left m.w's? Pm me if possible? We patients gotta look out for each other :)
 
I've been to both Melissa and Don as Well as Dr Baxter,he removed my gallbladder. Dr Barnett removed my colon ca after Melissa discovered it. Ron.
 
I started seeing Dr Agus Brotodihardjo in December, he's been great so far and he's at Caboolture so in between Bris and the Sunny Coast.

BTW my avatar pic was taken at Moffat Beach, love it! :cool2:
 
Welcome to all the new Aussies and Hi to all those I've yet to meet. Didn't know there were so many of us on here. Like dusty said, soon we'll be taking over the joint! :)
 
Wow, looking back over this it seems there are heaps of Aussies from QLD and the Sunshine coast. Is there something in the water there causing problems? Or maybe you are all more computer savvy. :)
 
annawato said:
Wow, looking back over this it seems there are heaps of Aussies from QLD and the Sunshine coast. Is there something in the water there causing problems? Or maybe you are all more computer savvy. :)
Click to expand...

maybe you are all related (putting it nicely)
 
Hi Irene :welcome:

I'm from Breamlea. Perhaps we could have a cup of coffee one day in Geelong, if you would like. Any other Geelongites would be more than welcome, too.
 
Hi I'm from Queensland too! New to the forum and feeling alot better to know that I am not alone with this rotten disease.
 
Speaking from an Aussie perspective, does anyone else think it's a little odd that Qld/Sunshine Coast are so strongly represented on the forum?
Maybe younger, more computer literate population, more likely forum participants.. I would have thought they should be relatively "protected" geographical areas, with higher access to sunlight and hence VitD. (Northern hemisphere studies seem to show a CD incidence gradient that increases with distance from the Equator/shorter days /colder weather, etc)
Any thoughts? :)



HD
 
Interestingly, Australia has a very high level of VitD deficiency compared with other countries (about 58% of the population). It is thought that this might be linked to the highly successful "slip, slop, slap" campaign, as well as the fact that most of us now work indoors and work longer hours.
 
How is everybody doing crohns wise? Imuran and diligent eating has got me in remission, but I find myself getting back into bad habits the better I feel... :( hope all my Aussie pals are doing good
 
Re: crohn's wise, ileostomy and resection are keeping me well at the moment gut wise - still got the aching bones, tiredness etc but overall doing a lot better than a year ago. Nearly 6 months since I've been in hospital - thats the longest for a long while!

Susan, You lucky thing. I havent been to Lord Howe but my sister in law worked there for several years. I hear it is absolutely beautiful - one of those places in the world where everything is just right. :)

Hellcat, welcome to the forum.

Ellie you're the only other sydneysider I've met I think (on the forum haha). I'm on the northern beaches. Also you echoed my words drawing similar conclusions about the sunshine coasters. I hadn't thought about vit D though, thats interesting cos I am always extremely low in it even when I get out in the sun a lot (without sunblock).

Hows everyone else going with their crohn's/uc? Updates please.....:)
 
My daughter had a colonscopy today, only a few pin size red spots in the ileum. Must better than at dx 15 months ago.
 
Glad things have been looking up, do you implement a diet/supplement regime for your daughters or is this good news purely the work of imuran?
 
In Sarah's case, she avoids milk. Hopefully the aza is starting to work but it maybe the work of pred.

She takes iron, b12, b multi and caltrate.
 
Went fishing for a week up to Baffle creek. remembered all my meds except the questran lite. After two days I was back in to full on diahorreah. Good fun using a bucket in a rocking boat. Saw my rheumatologist when I got back, I told him I had stopped injecting mtx because of a massive flare in my neuropathy. He checked his records and found I had had similar problems when I was on mtx years ago. We did not make the connection back then . No more mtx. Every time I have a flare in neuropathy I lose more feeling in my legs and left hand. It has become so bad it is affecting my work. he has referred me to a neurologist. Back on questran when I got home . Things improved after a few days... Ron.
 
This is to all the Queenslanders on the forum especially Gold Coast & Brisbane people. I am contemplating an operation to have a permanent stoma. My gastro and a colo-rectal surgeon have been urging me to do this for a few years now. I just want to know of a good surgeon that is direct and honest but also has a compassionate side. My current guy is very "gung" ho" and I am feeling very cornered about having to have the operation. Deep down I know it will be for the best but I am paranoid and scared as hell. I feel my whole life will change considerably and don't feel my surgeon appreciates this. Maybe I just need to get several opinions and find someone I feel confident and comfortable with. Those of you with permanent stomas, are you able to work full time and how much does it limit you?
 
I'm on the GC and see Dr. Ostapowicz at the hospital. Can't recommend him enough. Been about 6 years since my last resection and about 12 years since my colostomy was reversed. I had the bag for about 3 years before reversal and only the one large bag option due to the size of my stoma (because was being reversed). There were many great options available for those with a permanent stoma. I still had no problems with working and general life, just the dating at the time was a touch more tricky ;)

Good luck with the decision. Assume ill be in the same boat sooner or later.
 
Hellcat said:
I am feeling very cornered about having to have the operation. Deep down I know it will be for the best but I am paranoid and scared as hell. I feel my whole life will change considerably and don't feel my surgeon appreciates this. Maybe I just need to get several opinions and find someone I feel confident and comfortable with. Those of you with permanent stomas, are you able to work full time and how much does it limit you?
Click to expand...
I have a permanent stoma and whilst I don't work full time I see no reason not to. Dome and visit the stoma subforum in the surgery forum and you will meet many ostomates that work full time successful and any other questions you have can be answered.
All the best,
:heart: anna
 
Hey, I must have missed this topic earlier, but I'm from Adelaide

Daisy G said:
Hi from Cairns, QLD
A question do any of you guys that have posted thus far attend a Crohns Colitis Australia support group where you'll live?
Click to expand...

Yes, I co-facilitate the Adelaide CCA support group, and at least 1 person from crohnsforum.com has joined us in the past year we've been running. It'd definitely be good to see more groups around, and its not as hard as it looks, call CCA if you're interested in attending or starting a new one.

For more information see http://www.crohnsandcolitis.com.au/support-groups.php

2
 
Australian Radio National (ABC RN 621) Sunday 28 July 2013 5:05PM

How do radical changes to the body through illness, injury and surgery affect how you see yourself—and change your direction in life?

You’ll meet a nurse who has an ileostomy bag as a result of Crohn’s disease as a teenager…

After the broadcast, I will put up a link to the program.
 
I have seen the neurologist twice, second time was for a nerve conductivity test. The results are depressing . He recorded poor conductivity in my right foot and leg and none in my left. He said I have permanent moderate to severe peripheral neuropathy. He does not know what the cause is and he cannot help me.
Now my heart is joining the party. I am suffering frequent premature ectopic beats and the there are issues with the wave pattern. I have to wear a 24 hr heart monitor next week. I am over it. How many things have to break before the motor stops. Ron.
 
Susan2 said:
Australian Radio National (ABC RN 621) Sunday 28 July 2013 5:05PM

How do radical changes to the body through illness, injury and surgery affect how you see yourself—and change your direction in life?

You’ll meet a nurse who has an ileostomy bag as a result of Crohn’s disease as a teenager…

After the broadcast, I will put up a link to the program.
Click to expand...
Program audio now available.
 
QLD Gold Coast here, specialist is John Edwards at the GCH.. Been diagnosed with crohn's for 13 years. Going in wed 31st July for my 3rd bowel resection, had my last one 5 years ago!
Can anyone tell me what is the best pain relief out of epidural, morphine pump, tap block? I've had the morphine pump last two ops but would like to try something different and better!
 
Hi Ang, epidural may be the best for the first 24 hours, I haven't used it for bowel resections but for caesarean it was great but I think its only a short tem option and you will prob need something after that. Fentanyl is a good alternative to morphine if you don't like morphine - its delivered via a pca pump like morphine. Haven't tried tap block so can't help you there. Maybe someone else on here would have more info. Good luck with the op.
:heart: anna
p.s. You might like to ask this question in the surgical section where you are more likely to get more responses. I'll see if I can do it for you.
 
stefan said:
Hey, I must have missed this topic earlier, but I'm from Adelaide



Yes, I co-facilitate the Adelaide CCA support group, and at least 1 person from crohnsforum.com has joined us in the past year we've been running. It'd definitely be good to see more groups around, and its not as hard as it looks, call CCA if you're interested in attending or starting a new one.

For more information see http://www.crohnsandcolitis.com.au/support-groups.php

2
Click to expand...

Hi Stefan, I'm a bit delayed on my side... I've only just spotted your post.

Glad to read that you are involved with a CCA support group. I facilitate a support group here in Cairns. If there's any members reading this post and you live in the Cairns region it would be good to meet up with you at our support group. See the link Stefan posted re: CCA website for information on when the support groups are held.
 
Ang71 I reposted your question in the surgical area so check that out for more responses.
:heart: anna
 
Well I'm back in hospital had to have emergency surgery late Thursday night because my op I had just had done 7days prio the bowel wasn't stapled up properly so it was leaking. spent 2 days is ICU and woke up to a stoma!!! It's not permanent only for 6-12 mths....


Ang71 said:
QLD Gold Coast here, specialist is John Edwards at the GCH.. Been diagnosed with crohn's for 13 years. Going in wed 31st July for my 3rd bowel resection, had my last one 5 years ago!
Can anyone tell me what is the best pain relief out of epidural, morphine pump, tap block? I've had the morphine pump last two ops but would like to try something different and better!
Click to expand...
 
Sorry to hear about your troubles Ang. It must have been pretty scary for you and not fun to wake up with a stoma. That happened to me once. Whilst I had been warned it was a possibility I thought of course no that won't happen to me. But it did. :(
That one was temporary but I now have a permanent one. Far better than practically living at the hospital.
Come and visit the stoma sub forum, its under surgery. And if you have any questions or problems you're welcome to pm me if you don't want to post in the sub forum.
:heart: anna
 
Hi West Aussie here!! Bunbury south of Perth :)

________________________________________
Dx 2008 Crohns in the TI
Past meds:
methotrexate
Mofiltil
Imuran
6mp
Humira
Currently:
Entocort
Clinical trial drug ccx114043 (crossing fingers I don't sprout a new arm or something)
 
Hi Chantelle from an ex-Sandgroper now living in Victoria. :welcome:

Many, many, many years ago I used to go to youth camps in Bunbury.
 
Hi Joshua, I only just started the trial drug so I don't expect to see results for another 2 months or so according to my GI, but I'm very hopefully it works for me!!
Hi Susan, bunbury is a pretty place! I like it. Busselton has lots of youth camps and church owned camps along what we call "the god strip" along the beach? They are amazing relaxing beautiful places with just meters front the beach. :)
 
Hi all,

I lived in Sydney and the Blue Mtns. for about 15 years and hope to do some extensive travel around Australia in a year or so if I can get on the PBS for my Humira

Cheers,

Alan
 

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