Hi everyone. My name is Andrea, I am 27 years old and have had a J Pouch since January 2009. I am new to this site and wondering if there is anyone else out there in Australia with a J Pouch.

I was diagnosed with UC in 2004 and did not respond to any of the medication given to me. My last colonoscopy I had in 2008 showed dysplasia in the cells of my large bowel and was told I would need to have the surgery done. It all happen pretty quickly from then. I had my surgery in 2 stages. The first surgery was in September 2008 which was the removal of the large bowel, construction of the J Pouch and the Illeostomy. Three months later I had the reversal of the Illeostomy. Things are ok now with the J Pouch have had a couple episodes of pouchitis. The best thing I have found is the control I now have with going to the toilet. I still go about 8 to 10 times a day but its still better than before the surgery.

Thats my story in short about the process I went through. Here in Australia you dont really hear about anyone with a J Pouch or about UC that much. Sometimes I feel like am the only one out there with this.

Hi Andrea, I'm from Melbourne (j-pouch since 2006). You'll find plenty of Aussies here, from all over the place, and even a couple of New Zealanders.

Here's an older thread:

http://j-pouch.org/eve/forums/...881059312#9881059312

Hi Andrea, you're not the only one out there. There's a few of us around from Australia, but yes, you don't tend to hear much about people with j pouches here.
My name's Bernie from Melbourne, and I had UC for a good 13 years before I finally accepted I needed surgery (no choice really!!) at the end of 2005. (in 3 stages) It got to the point where I was on so much medication and couldn't work anymore, due to too many messy accidents. I'm sure you know what I mean. But at that time I did feel really isolated and wished there were more people with J pouches in Australia I could talk to. Not sure if I knew of this site then.
I'm glad I had the surgeries as I now have a life again (have just had a baby - would not have been pos before), but still have troubles and pain with the pouch 4yrs down the track. However, I agree with you. Having control and making it to the toilet is so much better than before surgery. (I keep reminding myself of this)
Thanks for writing your post. It's always nice to hear from someone locally, but just as equally nice to know that people from all around the world are sharing this experience.

Hi Andrea
I'm in Perth and I sometimes ask myself the same question! - Is there anyone else out there. This site is brilliant though and I have found a lot of great information here although sometimes I think I would like to speak face to face with someone.

I had surgery in April 2008 for rectal cancer and had a tempory ileostomy for nine weeks while the j pouch healed. I have been very fortunate through out it all but living with a j pouch does take some management skills.

Here is a site I found a few days ago and put in another post the other day. One of the great things about it is that it is an AUSTRALIAN Government publication!

http://www.bladderbowel.gov.au...owelAfterSurgery.pdf

Snoopy

Hi Andrea, I live on the Gold Coast, I've had a J pouch for 20 years and I used to think exactly the same as you, there's no-one else who has a pouch, then I found this board a few months ago and have got some great advice. I had UC since I was 17, but just used the manage it, it wasn't too bad then, but got worse after having kids, and the stress of moving from the UK to here made it even worse. Its playing up now and soon(on the 22/4/10)am having an op to see what's going on. Wishing you good health, Heather

Hi Heather, how is everything? I hope your pain is under control.

Hi Andrea, and other Kiwis & Aussies.
I am a Kiwi living in Australia. Been here since 1996. Had my pouch surgery here, but lost my colon in NZ.
Had my pouch since 1998. Haven't met anyone in person with the same surgery as myself.
This website is great. When I was first diagnosed with UC in 1994 there was no internet. I went to my local library and there was nothing for me to research about it. I was in the dark.
Luckily I found a pamphlet in a chemist about Inflammatory bowel disease which had a section on J Pouches. If I had not found this pamphlet,(which I still have), I would never have known about J Pouches and I would not have had the option to have one. My surgeon (back in New Zealand) who removed my perforated colon did not want me to have a pouch further on down the track when I asked him about it.
I had to really beg him to save enough rectum so I could have pouch surgery one day.
Begging a surgeon who thinks he knows best while you are dying from a perforated bowel is not easy.
He didn't want to do it, but thankfully he did.
So here I am , with pouch

Hi Nikki2, sorry for the delay in answering,my internet setting somehow got messed up so I couldn't post for a while. The pain got alot better after the implant(which was in the rectum and boring a hole to escape)was surgically removed. Unfortunately after a month of peace I am back in some pain which I have put down to the remaining implant in the sphincter deciding it wants out too just like the others. I dunno what it is about me but I keep rejecting the little buggers. Anyways back to the specialist on the 28th June, no doubt I'll be treated like a neurotic, even though I've been proved right twice. Will let you know how it goes, Heather

Hello Very Unique, so sorry to read about all the hassle you've had. I had my surgery in 1991, and as you say there was no net, and apart from my grandad having UC, no-one else knew about it. I couldn't believe it when the surgeon told me I'd have to have my colon removed, a big shock, especially as for years all the various doctors I saw put all the pain, blood etc down to haemorrids. I felt very isolated too as no-one I knew had heard of this procedure, I learnt to keep it to myself in the end. Then last November I found this wonderful site by chance and couldn't believe the amount of people that had also had this op, so now I know were not alone and it has answered so many questions that no-one else could understand, least of all the surgeons. I have some trouble now, but that is due the specialist talking me into having some implants injected into the anal spincter muscle to supposedly give better control, never worked and has been a right royal pain the butt!!!!! Hope everything is right your end, Heather

Hi Nikki2, Saw the specialist a couple of days ago, it was his registrar, they were having a med student day in there and everyone was being put on show and having to have mindless examina tions by the med students,whole thing was a waste of time, I don't think they even knew my history, certainly didn't ask any pertinent questions, were surprised at my colectomy scar and didn't seem to care. At least I know my liver is good, they all felt it!! Anyway when the registrar finally showed up, he fobbed me off saying he didn't know how to help me as Immodium etc dont work, what has anti-diarreah(sp?)gotta do with the implant pain, and come back in a month for more tests, pretty useless really. Heather

Oh Heather, that sucks. How frustrating.

Hi Nikki, you're right, its very frustrating, still stuck as I was before, no-one listening,oh well, maybe at the next appointment, the specialist will actually be there!!

quote:

Que sera sera

I am having a BCIR surgery done next month, similar to a Kpouch. I know there is one surgeon mentioned that does this surgery in Australia. Reason I am posting is we are thinking of moving to Australia for a few years and since I have FAP I always need to get scoped so finding a surgeon and doctor to handle anything after is making me skeptical on moving.

I joined this site last week I live on the Mornington Peninsula in vic. I lost a lot of my bowel due to rectal cancer only had the operation 8 weeks ago so it wasn't that many months ago that I had never heard of a pouch.