Hello everybody, its great to read all your posts as before I found this forum I never had spoken to anybody else with UC let along a J pouch. Anyways, just wondered if there is anybody in Oz on this forum??

I'm in Perth, but I don't have a j pouch. I've had my ileo for 34 years now due to UC.

Whereabouts are you?

Hi Shaz, I live on the Gold Coast, in the hinterland, at a small place called Clagiraba, no-ones ever heard of it, not even Coasters. I've had UC from a teenager, gradually worsening, especially thru 2 pregnancies, had colon removed in 1991, J constructed in 1992, always had a bit of hassle with it. My specialist talked me into the J as had two little kids at the time, but now probably have to return to the illeo. On a long term basis how have you dealt with the skin issues having to constantly stick the bag on. Last time I had an ulcer under the flange thing that took forever to heal, and also I found that being so watery(it may have been because I had a loop illeo), I was forever having to change the whole thing, every day or so. Thats my main worry about all this. Have the supplies in Australia improved since 20 years ago, the US market seems to offer so much more. I know we are extremely lucky to get it all at virtually nil cost, but I must admit it nags at my mind a bit.

hi

yep from australia, melbourne

Hi Van,
Nice to know we are spread all over Oz!!!!

quote:

Have the supplies in Australia improved since 20 years ago, the US market seems to offer so much more. I know we are extremely lucky to get it all at virtually nil cost, but I must admit it nags at my mind a bit.

We have the same supplies (and suppliers) as the USA - Coloplast, Hollister, Convatec, Dansac. There are some manufacturers that are unique to Australia eg Omnigon but they all manufacture 'world class' ostomy supplies ie bags, deodorisers, convexity, belts, etc Sometimes, they're marketed under different names for some reason eg Coloplast's Alterna in Australia is exactly the same as the Assura overseas, just different name.

Having had my ostomy for so many years, I'm not sure exactly what sort of things you had in mind that we weren't able to get hold of back then as I can't think of any? Let me know and I'll find out about them for you.

Wow I didn't realise all the stuff was available here, the stoma nurse just made up a list for me and thats what I always had. The convex type of wafer sounds good, have you tried those? Also I really want the belt, this was never told to me and I tried making my own stuff(not very good). I was being reversed in a few months,(after the colectomy)so maybe I never really delved into the supplies, but this time I will find out what is available, just have to get rid of the J and I'm set to go and be happy and painfree!!!!

Heather, do a search of stoma appliance scheme schedule. You'll find a list of all the free supplies you can get (e.g. 30 bags per month - your choice of bag, Eakin seals, ostomy and hernia belts, even support pants).

Hi Nikki, Not sure if you got my other reply cos it was when the site was down. Thanks for all the info, I didn't know all that stuff was available. Its not something I'm looking forward to but feel I have exhausted all the other channels, so its illeo here I come. Where-about in Oz are you?

I'm a Melbourne girl.

It's good to see some more Aussie on this site, it amazing how far and wide are all at. This is fantastic, i am so sorry that I dont get into the forums much, I should check them out more frequently.

but will be attempting to log in more, now that I am attempting to rest more, catch you all later

KamJ

Hi KamJ, whereabout in Aussie are you, I live on the Gold Coast, Heather

Heather, i live in Moree, NSW, about 1hr 20 from goondiwindi, Qld

Hi Kamj, I am so glad I found this site as for the last 20 years I knew of no-one else that had these problems, its great to know people understand all the hassle!!! Heather

I am so greatfull for this site, after I found out that I was going to have this surgery in 2007. My surgeon did not tell me much, so I came home and did a serach and this site came up and I looked and chatted to people.

They had helped me through the preparation time with their advise and once I got home was able to understand things.

I recommend this site to anyone that needs to have the surgery and even to my Genetic councillor so they can tell some of their clients.