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Hello Everyone,

I've been afflicted with UC for the past 4 to 5 years and life has been one painful rough downhill ride during all that time because i've never really had any remission. As a bonus, after my most recent colonoscopy a couple of days ago, my gastroenterologist told me that my entire colon is now severely inflamed and/or ulcerated, and that total colectomy would be one of the options worth considering. Since I'm unwilling to take any immunosuppressant medications owing to their potentially dangerous side-effects, I have decided to go for surgery in order to (hopefully) end my debilitating condition and get on with life.

Since I live in Australia, I would be really grateful if anyone could please recommend some good colorectal surgeons anywhere within Oz based on their own experiences. I understand that the J-Pouch is a procedure requiring a high level of skill and expertise, so it's critical to have a surgeon with a great deal of experience and competence. Any advice would be much, much appreciated.

Many thanks & best wishes

DownWithUC

Replies sorted oldest to newest

S sudieMember
In answer to your question about surgeons, I am from Brisbane and had a doctor From Holy Spirit a David Clark .This is to far for you to travel as you would be having follow up visits also if any problems pop up which can happen it would be difficult, I have been having a few blockage problems requiring hospital stays, I have had my pouch five years next week and it has not been a smooth run this J pouch site has been a great help with advice . you would be best contacting the crohns and colitus association for a contact you can become a member they are also helpful there email address is. Info@crohnsandcolitus.com.au. And web www.cronsandcolitus.com.au. They put me in contact with several J pouch people before my surgery to talk to which was good . Be prepared in your mind that it will take some time to get through this period after surgery my doctor said 12 months to really feel good keeping this in mind saves a lot frustration you will come good but be prepared it takes some time.
S
D DownWithUCMember
Hi sudie,

Many thanks for your timely reply and advice. I hope your experience with the J-pouch has been becoming easier overall during the past 5 years despite the difficulties along the way. I'm thinking of having the surgery done in Sydney if possible due to practicial reasons. I'll certainly ask the surgeon (once the choice is made) about the potential difficulties you raised, and try the web site <crohnsandcolitis.com.au> you recommended.

Thank you again & all the best.
D
S SalmakMember
Hi DownWithUC,

I have lived in Melbourne for the past 4 years and am originally from Adelaide. I am currently going through a 3 step j pouch procedure. The surgeon that I have gone with (who was recommended to me by a number of GI’s) is Stephen Bell.

He is associated with the Cabrini hospital.

Feel free to PM me should you have any further questions.

Cheers
S
D DeedeehMember
hi there, i lived in sydney for a long time and saw Dr. Warwick Selby (Gastroenterologist) and Dr. Michael Solomon (colorectal surgeon) http://www.cssanz2013.org/invi...-13/michael-solomon/
They are both with RPA Hospital. I found them both to be fantastic. I did not end up having my surgery in Australia but came home to Ireland to have it and be around my family. If I had stayed in Australia I would have definitely chose Michael Solomon. He was even very kind to respond to emails and questions when I was in Ireland as it was so hard to navigate the system here in Ireland and get the info i needed. Hope this helps. Dee
D
D dave.hutch069Member
Another who can vouch for the team at the RPA. Prof Solomon did mine in 2004 and despite complications, did an outstanding job. Oh, did I also mention that he saved my life by talking me into the total colectomy on a hunch that something was not quite right in there. When they pulled the bowel out 2 months later they found cancer in the bowel that hadn't shown up in biopsies which had spread to the lymph nodes surrounding the bowel. Still kicking today and very thankful for the quality of life I have now.

Regards and good luck DwUC,
Dave
D
S spouchMember
Hi John from the central coast nsw.
As I see that you live in Adelaide you will find that Chrones and Colitus Australia might have a support group in Adelaide that can recommend a Surgeon that has a lot of experience with doing J Pouches.
If I was going down that path again I would want a surgeon that has quite a lot of experience with J pouches operating on me.
I have what is called an S pouch ,uses 3 loops of Ileum were a J pouch only uses 2 but the Idea is that same ,one of the first in Australia done in 1981 and have not had too much trouble so far but I try and look after myself.
Please feel free to ask me any questions if you think it may help.
Best Regards from the Central Coast NSW.
John.
S
D DownWithUCMember
Hi Helen, Dave and John,

Thank you all very much for kindly sharing your advice and experiences with me. It feels very reassuring to have multiple recommendations for Prof. Solomon, and I will definitely try to have my colectomy surgery with him later on if possible. Lately I've been consulting with a gastroenterologist in Sydney, Prof. Thomas Borody, who has convinced me to give his multiple antibiotic therapy a try before undergoing irreversible colon removal. I've just started taking some medications prescribed by him and it will be some weeks at least before we can know for sure if his treatment is effective. Meanwhile, thanks to you and all the others who have graciously taken the time to reply to my query, I can feel much more at ease knowing that a good outcome can be expected from colectomy in the right hands.

Many thanks again, and I wish everyone of you all the very best.

Take good care.

Ying (DwUC)
D
K KushamiMember
Hi Ying,

I don't see any recent posts from you, so I hope you are perhaps feeling better and did not have to have the j-pouch surgery after all.

I am from Melbourne and had a great surgeon, but that is not much help for you in Adelaide. I did just want to chime in as us Aussie j-pouchers are few and far between!

I was heartened to see quite a few posts from Aussies - hello to you all!

Cheers,
Sarah
K
D DownWithUCMember
Hi Sarah,

Thanks for your post! After struggling with UC for more than 5 years with no signs of getting better or real hope, I eventually decided to undergo colectomy & J-pouch surgery in June this year. I had it done by a local surgeon in Adelaide who was recommended by different people and so far the recovery process has been fairly uneventful. I'm still awaiting the final stage of surgey, which has been planned for November this year. I guess I'll find out how well the J-pouch has been done after everything's finished.

Meanwhile, I hope you're doing well yourself after you own operation. For me, it was definitely tougher to get back on my feet than I'd expected, so I hope you haven't had too much difficulty at all.

Best wishes,

Ying
D
D DownWithUCMember
Hi Hawker,

I ended up having my surgery with Dr. Nick Rieger because he was recommended by multiple people and I felt comfortable with his confidence, patience and thoroughness.

I'm currently still awaiting the final stage of my operation to be done (which will take place in November), after which my J-pouch will become fully functional. Right now I can't say how well things will turn out eventually, but so far my recovery has been smooth and I'm very happy with what Dr. Rieger has done so far.

Cheers.
D
K KOBMember
+1 for Michael Solomon. I went private to make sure he was the surgeon that did the surgery (not one of his interns). He removed my colon did the stage 1 J-Pouch on 9 July and will have the takedown by him on 15 Oct. I'm in Canberra (got bad vibes from the surgeon who sat by my bedside in Canberra hospital when I was in for UC - and he charged me $270 for the privilege, he said he 'didn't do many, had never done the surgery laproscopically - which wasn't an option for me anyway - and was a bit vague on J-Pouch). I asked my GI who the best colorectal surgeon was in ACT/NSW and he unreservedly offered Michael Solomon.

Michael is a nice guy, approachable and happy to discuss whatever you want/need to discuss. His rooms are at 100 Carillion street at the RPAH Professional Center about a 5 minute walk from RPAH proper. His charges are, for what you get, quite reasonable. If you have surgery there you need to be at the Professiona Center the day before for pre-admission testing. If you are not local, the Camperdown Rydges hotel is a 5 minute walk from RPAH.

Again, I'd recommend Michael and his team based on my experiences to date.

HTH
K
M MareeMember
Hi,
I am interested to know who the Surgeon in Canberra Hospital was that you were not happy with because I am having a Total Colectomy this year by a Surgeon in Canberra and I am curious as to why you chose to go to Sydney.

I would appreciate your reply as this is of great concern to me and I too would rather go to Sydney to have my surgery than to have a surgeon in Canberra who was not up to the job.

Regards,

Maree
M
S SamlimMember
Kushami posted:
Hi Ying,

I don't see any recent posts from you, so I hope you are perhaps feeling better and did not have to have the j-pouch surgery after all.

I am from Melbourne and had a great surgeon, but that is not much help for you in Adelaide. I did just want to chime in as us Aussie j-pouchers are few and far between!

I was heartened to see quite a few posts from Aussies - hello to you all!

Cheers,
Sarah

Hi Sarah,

I am currently in hospital and may end up needing surgery.  Can you please let me know which surgeon you had?  I am also looking for the best. 

Thanks,

Sam

S
K KushamiMember
Samlim posted:
Kushami posted:
Hi Ying,

I don't see any recent posts from you, so I hope you are perhaps feeling better and did not have to have the j-pouch surgery after all.

I am from Melbourne and had a great surgeon, but that is not much help for you in Adelaide. I did just want to chime in as us Aussie j-pouchers are few and far between!

I was heartened to see quite a few posts from Aussies - hello to you all!

Cheers,
Sarah

Hi Sarah,

I am currently in hospital and may end up needing surgery.  Can you please let me know which surgeon you had?  I am also looking for the best.

Thanks,

Sam

Hello Sam,

I feel terrible that I never answered your post here. I hope you have had surgery if it was needed and are feeling better either way.

I'll just post the details anyway in case the info is useful to other people.

My surgeon in Melbourne was Ian T Jones. He works at Royal Melbourne (public) and Melbourne Private (they are next to each other).

http://www.colorectalmelbourne.com.au/

I have been happy with the care he gave me, both surgical and "pastoral" (e.g. bedside manner). He also has a very pleasant and helpful receptionist/practice manager (always a bonus!).

EDIT: I'm afraid that I have to retract my positive thoughts about Ian T Jones. Although I think he is a skilled surgeon in terms of creating the j-pouch, his attitude when things went wrong for me was unhelpful. After I presented with sudden (overnight) abdominal distension of about 5 extra inches and pain after eating, he said my abdomen "looked typical for a woman my age" (it didn't, and it certainly didn't look normal compared to the day before it happened). Then when he ordered a scan, I was proved right as I had megapouch.

I muddled on because reverting to an ileostomy is very problematic for me, and my condition recently worsened. I went back to see him because the others I had tried weren't great, and unbelievably he did the same thing again. Stated that my abdomen "looked normal for a woman my age" (it doesn't, even more!) and was so keen to dismiss me as someone who couldn't tell the difference between weight gain and pouch distension that he even seemed to have forgotten that he was the one who diagnosed megapouch previously. What's the point of seeing a doctor if they are going to pooh-pooh everything you say?

He also said some odd things to me, like "Why haven't you been diagnosed with chronic fatigue syndrome" – er, because I don't fit the diagnostic criteria and also because I've been diagnosed with something else by a specialist and started treatment that works. It wasn't good at all. He also attempted to brush off certain things as psychological that obviously weren't. I was so disillusioned.

K
Last edited by Kushami

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