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Crohn's Disease Forum » Your Story » New aussie guy says hello


07-26-2015, 05:33 AM   #1
bjgong
 
Join Date: Jul 2015
Location: wollongong, New South Wales, Australia
New aussie guy says hello

hi there people,just dropping a line to say hello,im a 32 year old male from Wollongong australlia and was diagnosed with Crohn's about 4 years ago have had several hospital visits,had fistulas/abscess cut out,currently have 4 permanant setons in place for past 2 years,severe reflux plus meds for it,been on 100mg Imuran for about 2 years and still trying to get my head around this disease,i work fulltime which can be a struggle at times,wondering if this pretty normal for some with this disease
07-26-2015, 12:29 PM   #2
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome. With the fistulae and abscesses you've been experiencing, have they tried you on Remicade?

All my best to you.
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07-26-2015, 06:58 PM   #3
bjgong
 
Join Date: Jul 2015
Location: wollongong, New South Wales, Australia
Hi there, no remicade never really heard of it
07-27-2015, 02:54 AM   #4
Catherine
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Melbourne, Australia here.

Have they tested your imuran levels?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-27-2015, 03:22 AM   #5
bjgong
 
Join Date: Jul 2015
Location: wollongong, New South Wales, Australia
Hi catherine,yes when I first started inmuran I would get a blood test once a month but now its every 3 months as they always come back normal
07-27-2015, 06:29 AM   #6
teeny5
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Location: California

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Welcome to the forum!
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-27-2015, 08:25 AM   #7
Catherine
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They used to use weight base dosing for imuran. 100mg seems quite a small for an adult male. Metabolite testing allows some individuals to take higher dose of imuran than weight based dosing.

http://www.uptodate.com/contents/6-m...=upsell#upsell
07-27-2015, 03:00 PM   #8
bjgong
 
Join Date: Jul 2015
Location: wollongong, New South Wales, Australia
The dr has told me he will up my dose if it comes to it, before i started imuran I was in a pretty bad way,could not work or do much at all, with in 3 months of starting imuran was back at work and back to being partly normal
07-27-2015, 04:27 PM   #9
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hi bjgong and welcome.

What I would do in your situation is firstly to have a Thiopurine Metabolites blood test done. If you are at sub therapeutic levels then your dose should be increased. If on the other hand you are at therapeutic levels then Imuran is failing you and you need to move onto a biologic…Remicade or Humira.

Fistulas and abscesses are complications of Crohn’s and indicative that your disease is not under control. Personally I don’t think that the doctor should be satisfied with the situation you are in and should be doing more to move you into a state of remission.

Dusty. xxx
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07-27-2015, 08:36 PM   #10
bjgong
 
Join Date: Jul 2015
Location: wollongong, New South Wales, Australia
Ok thanks for the advice
07-28-2015, 12:31 PM   #11
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there, no remicade never really heard of it
I would definitely research and ask your doctor about Remicade.
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