145774 Crohns Magazine Text · 2014-06-23 · Sydney, and Box Hill Hospital, Melbourne. The forums were well attended, ... A dietitian spoke on dietary requirements, while CCA Qld

Magazine for Crohn’s & Colitis Australia ™

DESERT DILEMMA

IBD in the UAE See pages 8-9

IBD NURSES

Your say See page 14

PAGE 10

4-5 CCA NEWS

6-9 MY STORY

10-11 SILVER LINING BALL

12-13 FUNDRAISING

14-19 RESEARCH

20-21 CHINESE HERBS

22 Q&A

23 GENERAL INFORMATION

INSIDE INSIGHT

EDITOR Alison McClelland

CONTRIBUTORS Belinda Headon

Elaine Hickman

Dr Carl Kirkwood

Associate Professor Graham Radford-Smith

We send our thoughts and best

wishes to members who are ill

at present, or who are recovering

from surgery. We wish you a very

speedy recovery.

Page 4 Inside Insight www.crohnsandcolitis.com.auPage 2 Inside Insight www.crohnsandcolitis.com.au

MISSION STATEMENT

CCA’s mission is to support the

Crohn’s and colitis community

support programs including

education, advocacy,

counselling, increasing

awareness and generating

and utilising funds for research

and services.

INSIDE INSIGHT SPONSOR

Crohn’s & Colitis Australia™

acknowledges the

generous contribution

of Orphan towards the

development and printing

of the CCA National

Magazine. Inside Insight

is published by Crohn’s

& Colitis Australia™

(CCA), Copyright 2010.

g

www.crohnsandcolitis.com.au Inside Insight Page 3

We started the year with two

teen camps, one in March

(Queensland) and the other in

April (New South Wales). We had

110 people participate, and we

know from the expanding number

of “friends” of Lulu Livemore

– our new CCA Facebook

administrator - that many

friendships were forged and myths

dispelled during the camps. We

also had feedback requesting

further opportunities for teens to

interact in a fun, non-threatening

environment.

In May, we undertook some

major awareness activities. With

the help of volunteers in every

capital city, CCA handed out

!"#$%&'#()*$+,-&.*$&./,&012#$&

Yates, who had the courage to

be the face of our awareness

week campaign. We invited

people to sign our online petition

showing their support for the rights

of people with IBD. At the time

of going to print, 2222 people

have signed the petition, bringing

us closer to our 10,000 signature

target. We also launched a

range of merchandise, including

shopping bags, wrist bands, pens

and a lapel pin that can help

raise awareness and generate

funds. Our website continued

to develop to meet the needs

of our members. We now offer

online purchasing of merchandise

and tickets to events, as well as

options for renewing, donating

and joining online.

Operationally, we spent

most of the year developing

procedures, processes and

policies to guide us into the

future. We also rolled out a new

customer relationship database

to help us communicate with

our members in a much more

)+1#3"4&5#$%.,(3&(,6&#'78+#,)&

way. We participated in local

and international conferences.

We supported the call for better

access for biologic treatments –

5($)+8*3($3"&'.$&7%)*3+%+,-&9$.:,;%&

disease and the call for increased

funding for specialist IBD nurses for

the holistic care of IBD patients.

We continued to hold forums in

each state, symposiums and offer

a helpline service and support

groups to help lessen the isolation

that can sometimes come with

IBD. We formally awarded the

Angela McAvoy Fellowship, the

7$%)&1(<.$&=>?&$#%#($8:&-$(,)&

awarded by an Australian charity,

(,6&/#&:#36&.*$&@#$"&7$%)&-(3(&

ball to commemorate our 25th

anniversary.

All this activity at CCA means that

we are working hard to make

your lives more liveable, and

as we come to the end of the

year, we also make time to rest,

renew, refresh and be grateful

for all the wonderful people and

organisations that have helped us

throughout the year. A particular

thank you to my small, dynamic

team of committed staff, all our

volunteers, including our Board

of Directors, and our donors,

supporters and sponsors, who

have all helped us to deliver our

programs to you.

I wish you all a happy, healthy

and restful Christmas and I look

forward to an exciting new year.

Best wishes

Francesca Manglaviti

THEY say it’s a sign that you’re getting older when you notice time racing past -

or maybe it’s that so many things have happened in a short period of time, that

everything seem to whizz past. Either way, time is too precious to ignore, or to

ignore the events that shape it. And this, our 25th year, has been nothing if

not eventful.

Page 4 Inside Insight www.crohnsandcolitis.com.au

News

AUSTRALIAN GASTROENTEROLOGY WEEK (AGW)

AB=C&"#($;%&0DE&/(%&:#36&()&

the Gold Coast Convention

and Exhibition Centre from

October 20-23. Hosted by the

Gastroenterological Society

of Australia (GESA), delegates

attending the event included

health professionals, many

of whom travelled from

interstate and other countries,

and representatives from

pharmaceutical and medical

technology companies.

Other key participating

organisations were the

Australasian Society for Parental

& Enteral Nutrition (AuSPEN) and

the Gastroenterological Nurses

College of Australia (GENCA).

Once again CCA was

welcomed to take part with an

information stand, along with

other gastroenterology-related

organisations. Visitors to the

CCA stand enquired about the

services offered and arranged

for supplies of the IBD information

brochure to pass on to patients,

or for a Patient Information Kit,

which is more suitable for health

professionals that see a large

number of IBD patients. Visitors

)..F&(&8.5"&.'&990;%&=,%+6#&

Insight magazine.

Each day comprised a full day

of meetings, talks, workshops,

symposiums and discussion

sessions on a range of topics,

including IBD.

CCA was represented by

QLD State Co-ordinator Anita

Reilly, who attended sessions

that included topics such as:

Biologic Therapies – best use

now and a look to the future;

G5)+1(3&*%#&.'&0,)+HAIJ;%&(,6&

Immunomodulators; Management

of Perineal Fistulising Disease;

Parental Nutrition; and Assessing

Outcomes and Risks of IBD and its

Therapies.

Having a presence at AGW gives

CCA a further opportunity to meet

and renew contact with many of

the doctors, nurses, dietitians and

others with an interest in IBD.

INFORMATION FORUMS

CCA last month held information

forums at Flinders Medical Centre,

Adelaide, Concorde Hospital,

Sydney, and Box Hill Hospital,

Melbourne.

The forums were well attended,

and featured a range of

expert speakers, including

gastroenterologists, dietitians,

surgeons and IBD nurses.

In October, Wesley Hospital in

Brisbane held an information

session for hospital staff,

featuring a presentation by a

gastroenterologist and colorectal

surgeon on the medical and

surgical management of IBD,

with a particular focus on colitis.

A dietitian spoke on dietary

requirements, while CCA Qld

State Co-ordinator Anita Reilly

educated staff about the needs

and interests of people living with

IBD.

CCA also held its Annual General

Meeting at Box Hill Hospital on

November 13. The 09/10 Annual

Report is available upon request,

or can be downloaded via the

website.

CONSUMER REPRESENTATION

CCA (QLD) State Co-ordinator

Anita Reilly recently accepted

an appointment from the

Department of Health & Ageing

to become a member on the

Medical Services Advisory

Committee (MSAC) Advisory

Panel. The panel is reviewing an

application for pillcam capsule

endoscopy for the diagnosis of

%*%5#8)#6&%1(33H2./#3&9$.:,;%&

disease. Anita will be serving in the

capacity of a consumer health

representative. Other members

on the advisory panel include

medical professionals and experts


News


familiar with the technology

being assessed. The role of MSAC

is to advise the Health Minister

on evidence relating to the

safety, effectiveness and cost-

effectiveness of new medical

technologies and procedures.

This advice informs the Australian

D.@#$,1#,);%&6#8+%+.,%&(2.*)&

public funding for new, and in

some cases, existing medical

procedures. For more information

go to www.msac.gov.au.

NATIONAL SELF HELP & SUPPORT GROUPS AWARENESS WEEK

This inaugural event organised by

Self Help Qld Inc, and supported

by Qld Health, culminated in a

full-day exhibit on September 9,

featuring more than 50 self help

and support groups, including

CCA. Housed in marquees in a

busy pedestrian area opposite the

A$#(%*$"&9(%+,.&+,&>$+%2(,#;%&9>?4&

each group was supplied with

their own display and information

booth. All received a high level

of interest and enquiries from the

public. Visitors to the CCA stand

included workers on their lunch

break curious to have a look, and

passersby attracted to coloured

posters showing the digestive

tract and pictures of IBD from the

inside. Others recognised the

F#"&/.$6%4&9$.:,;%&(,6&8.3+)+%4&

and either had IBD themselves

or knew someone and came

to chat or take brochures. One

surprise visit was from Michael,

who runs an organisation for

Ethiopians now living in Australia.

B#&$#8.-,+%#6&990;%&,(1#&

having had previous contact in his

homeland with a young Ethiopian

1(,&/+):&9$.:,;%4&/:.&:(6&2##,&

assisted by CCA with information

and support. The young man,

Mihreteab, had his story featured

in the former CCA Qld newsletter,

explaining his struggle living with

a very rare illness in a country that

has few health resources and

access to only the most basic

medicine.

NEW SUPPORT GROUP

A NEW support group will

commence on February 7, 2011,

at Lilydale Lake Community

Room, Lilydale (Melway Ref 38 F6).

The group will be facilitated by

CCA member Karen Budden on

):#&7$%)&K.,6("&.'&#(8:&1.,):4&

from 7.45pm. (See page 7 for

L($#,;%&5#$%.,(3&%).$"MN

PBS PUSH

ABBOTT Australia has applied

to the PBAC to have Humira

(adalimumab) listed on the

O:($1(8#*)+8(3&>#,#7)%&C8:#1#&

PO>CN&'.$&)$#()1#,)&.'&7%)*3+%+,-&

9$.:,;%&6+%#(%#M&

=,!+Q+1(2&PR#1+8(6#N&/(%&

approved for PBS listing for

7%)*3+%+,-&9$.:,;%&#($3+#$&):+%&"#($M&

CCA will inform members of the

outcome of the application when

a decision has been made.

NEW CONTACT DETAILS

AFTER many years on the Sunshine

Coast, CCA Qld State Co-

ordinator Anita Reilly recently

relocated to the Brisbane area.

New postal address and contact

details for CCA Qld are:

PO Box 7113, Hemmant, QLD, 4174

T: 07 3822 4058

F: 07 3822 4540

The freecall number 1800 071

072 and email address info.qld@

crohnsnandcolitis.com.au have

not changed.

OFFICE HOURS

A:#&990&.'78#&/+33&2#&

closed from Thursday,

December 23, to Tuesday,

January 4. We would like to take

this opportunity to wish everyone

a joyful festive season and a very

happy and healthy 2011.


My Story

HI. I am Isobel (Izzy). I am 12 years old. I was

6+(-,.%#6&/+):&9$.:,;%&6+%#(%#&()&):#&#($3"&(-#&

.'&7@#4&/:+3#&=&/(%&+,&F+,6#$-($)#,M&=&:(6&8.,%)(,)&

)*11"&5(+,%M&0)&7$%)&=&%)($)#6&.,&)(23#)%4&2*)&/:#,&

I was seven I needed to have a colostomy. It was

:($6&).&(8)&,.$1(3&2#8(*%#&=&<*%)&/(%,;)&(,6&1.%)&

.'&1"&'$+#,6%&6+6,;)&*,6#$%)(,6M&=&:(6&):#&8.3.%).1"&

*,)+3&=&/(%&,+,#M&=&/(%&7)&(,6&:#(3):"&(,6&-$#/&@#$"&

well then. I remember going to the hospital with

my colostomy and coming home without it and

how weird and different I felt, almost like a part of

me was missing. After that it was basically about

getting me back to normal. I have needed imuran,

+,!+Q+1(24&(,6&5$#6,+%.3.,#&(,6&:(@#&,./&%)($)#6&

having Humira.

In 2009, we participated in the Run Melbourne and

$(+%#6&STUTV&'.$&9$.:,;%&W&9.3+)+%&0*%)$(3+(&P990NM&

This was great and it started us looking for other

runs to enter. Earlier this year my family - mum, dad,

Andrea and I - went in Run for the Kids. Two other

families joined us, and that was fun. We love dogs,

and so we also went in Million Paws Walk. It was

great to see so many dogs all walking around Albert

Park Lake. We again went in Run Melbourne in July

this year. We raised an amazing $2610 for CCA.

Heaps of people donated to my web page. It was

-$#()&).&%##M&=&:(6,;)&2##,&%.&/#33&#($3+#$&):+%&"#($4&

and this helped cheer us up. It gave us a goal to get

).4&(,6&7,+%:M&

Also this year, on September 11, mum, dad and I

())#,6#6&990;%&&C+3@#$&X+,+,-&>(334&()&/:+8:&=&%5.F#&

2$+#!"&(2.*)&/:()&+)&/(%&3+F#&).&3+@#&/+):&9$.:,;%M&

=)&/(%&):#&2#%)&,+-:)&.'&1"&3+'#M&=;@#&,#@#$&1#)&%.&

1(,"&,+8#&5#.53#&(,6&3.)%&.'&5#.53#&/+):&9$.:,;%M&

E:.#@#$&):.*-:)&.'&6.+,-&+)&+%&(&6#7,+)#&-#,+*%Y&

They also had a guy there by the name of Tansel

03+4&/:.&(3%.&:(%&9$.:,;%&(,6&1#1.$+Z#6&):#&[#33./&

O(-#%&4/:+8:&+%&).)(33"&(/#%.1#M&B#;%&/("&*5&

there with all my idols. The whole thing was to raise

1.,#"&'.$&990;%&".*):&8(15&5$.-$(14&/:+8:&=&

think would be good for me to go to in the next few

"#($%&2#8(*%#&%.1#)+1#%&=&):+,F&=;1&):#&.,3"&".*,-&

5#$%.,&+,&):#&/.$36&/+):&9$.:,;%M&&&&

G@#$&):#&"#($%&.'&3+@+,-&/+):&9$.:,;%4&=;@#&:(6&

so much support from my family: mum always

being there to listen to me; dad always coming

into theatre with me and getting dressed in funny

theatre gear; and my sister Andrea caring for

me and giving me lots of hugs. Plus there is our

-.$-#.*%&6.-&>$(6+#4&(3/("%&$#(6"&'.$&(&8*663#Y&&

The teachers at school are really nice (especially the

.,#&=&:(@#&,./N&(,6&6#7,+)#3"&@#$"&%*55.$)+@#M&A:#&

6.8).$%&(3%.&)$"&):#+$&2#%)&).&7,6&%.1#):+,-&):()&/+33&

make me feel better.

03):.*-:&=&1+%%&%.1#&%8:..34&+)&:(%,;)&2##,&)..&2(6M&&

A:#&,#Q)&%)#5&+%&%#8.,6($"&%8:..3&,#Q)&"#($Y

On the weekends I play in a netball team, called

):#&I#.,;%4&/+):&%.1#&.):#$&(/#%.1#&-+$3%M&=&3+F#&

having lots of hobbies to keep my mind busy. I like

photography, playing tennis, drawing and baking

cakes. I have started doing sewing classes and

1(6#&(33&%.$)%&.'&):+,-%M&=;@#&53("#6&2(%%&-*+)($&'.$&

three years and am now learning some Taylor Swift

%.,-%M&=;@#&<*%)&<.+,#6&(&-+$3;%&$.8F&2(,6&()&%8:..3&

(,6&+);%&$#(33"&(/#%.1#Y

I hope one day there will be a cure, but meanwhile I

keep trying my best at whatever I can.

Isobel Sidler has lived with Crohn’s for more than half her young life. In September she touched the hearts of all who attended CCA’s Silver Lining Ball, when she explained how the illness has affected her.

HI I am Isobel (Izzy) I am 12 years old. I was



My Story

=&E0C&6+(-,.%#6&/+):&9$.:,;%&6+%#(%#&\]&"#($%&(-.4&

when I was 19. I would have to say that living with

this disease has been, and still is, a rollercoaster

$+6#&^&):#$#&($#&)+1#%&/:#,&=&(1&7,#&(,6&)+1#%&

when I have been pretty low. Over the years I have

had three bowel resection surgeries, and two for

anal abscesses. I have also had many different

medications, with varying degrees of success. One

.'&):#&1.%)&'$*%)$()+,-&):+,-%&(2.*)&9$.:,;%&6+%#(%#&

+%&):#&/("&+)&F##5%&.,&8.1+,-&2(8FY

0&8.*53#&.'&"#($%&(-.&=&:(6&(&$#(33"&2(6&!($#&*5&

and ended up in hospital for a couple of weeks. I

was put on a high dose of cortisone and improved

dramatically. Then after tapering down the

8.$)+%.,#&=&%*''#$#6&(,.):#$&!($#&*5&(,6&3(,6#6&

back in hospital again. After that visit I was put on

methotrexate tablets, as well as fortnightly Humira

injections. Once again I was back to feeling good,

for about 18 months. Sadly, about eight months

(-.&=&:(6&(,.):#$&2(6&!($#&*54&%.&,./&=&(1&:(@+,-&

weekly injections of methotrexate (that my husband

administers), as well as the Humira injections.

On one hand, this combination of medication is

/.$F+,-&$#(33"&/#33&'.$&1#4&(,6&=;1&'##3+,-&5$#))"&

good most of the time. But on the other hand, I am

struggling with side effects from the higher dose of

1#):.)$#Q()#M&&=;@#&(3/("%&2##,&@#$"&%#,%+)+@#&).&

any medications, and I suffer badly from extreme

fatigue and complete mental and physical

exhaustion, which knocks me over for two whole

days each week. This has forced me recently to

/.$F&.,3"&'.*$&6("%&(&/##F&$():#$&):(,&7@#4&/:+8:&

was a very hard decision. To me this felt a bit like

admitting defeat, something I have always been

(6(1(,)&):()&=&/.*36&I_`_R&6.Y

Last year I started going to an IBD support group

that Kate Eldred was running in Ringwood. From

):#&@#$"&7$%)&1##)+,-&=&8.*36&%##&):#&2#,#7)4&,.)&

just to myself, but to the other members. The feeling

of being different or alone is common among

5#.53#&%*''#$+,-&/+):&(,"&+33,#%%4&(,6&=;@#&6+%8.@#$#6&

that not only is acknowledging your illness a very

important step in the healing process, but talking

(2.*)&+)&8(,&:#35&".*&8.5#&/+):&+)Y&J.$&):#&5(%)&TV&

years I have been lucky enough to have a best

'$+#,64&K#3(,+#4&/:.&(3%.&:(%&9$.:,;%&6+%#(%#M&&

We have supported each other through a lot of

).*-:&)+1#%4&(,6&(3%.&%:($#6&(&3.)&.'&-..6&)+1#%Y&=&

F,./&7$%):(,6&:./&(1(Z+,-&+)&+%&).&:(@#&%.1#.,#&

to share with and talk to, who actually DOES

understand what you are going through.

These two things inspired me to start a new support

group, in my local area. So, with the help of Kate

and CCA, I am excited to be starting a new group

next year in Lilydale (VIC). Kate is also starting a

new one in Templestowe, which will make a support

group accessible to a much larger area. My hope

+%&):()&.):#$%&/+33&2#&(23#&).&#Q5#$+#,8#&):#&2#,#7)4&

and have the support, that I have found to be so

helpful in coping with this disease.

Thankfully, I have a wonderful supportive family. My

husband and I just celebrated our 26th wedding

anniversary, and we have two beautiful healthy

children. I have always tried to keep my illness

from taking over my life, and affecting my family,

however their care and support for me is invaluable.

They are a constant motivation to not only keep

7-:)+,-4&2*)&).&F##5&%1+3+,-&(%&/#33M

Although Karen Budden was diagnosed 25 years ago, it has been a long road to accepting her condition, and learning how to get the best out of her body.

)+ ,6 3% %: #6 &3.) '& .6&)+1 Y&=&


My Story

BEING diagnosed with acute ulcerative colitis at

the age of 14 meant that I found myself wondering

many times what my life might be like, given the

often severe limitations the disease places upon

us. However, I kept up my high school studies

throughout the ups and downs and enrolled in

university in Brisbane to study Business Management

(International Business) and Social Science

(International Development). I moved away from

my family to go to uni, which was a big step for me

both emotionally and health-wise, as I had relied on

my parents and my siblings so much during the early

years of my diagnosis. As the names of my degrees

%*--#%)4&=;@#&(3/("%&2##,&#Q)$#1#3"&+,)#$#%)#6&+,&

):#&/.$36&()&3($-#&%.&=&-*#%%&+);%&,.)&%*$5$+%+,-&=;@#&

ended up living overseas.

I met my husband Steve at uni, and during the time

/#;@#&2##,&).-#):#$4&=;@#&.,3"&2##,&.,&.,#&8.*$%#&

of steroids. My mum jokes, with a great deal of

seriousness, that being in love has done wonders for

1"&:#(3):Y

In 2007 Steve and I were offered jobs in Dubai and

we jumped at the chance to live and work abroad.

E#;@#&2##,&+,&):#&a0_&'.$&1.$#&):(,&):$##&"#($%&

now, living in both Dubai and Abu Dhabi, and are

very grateful for all the experiences life away from

Australia has brought us.

The UAE is an amazing country, home to around six

million people living in a mainly desert environment

that ranges from gorgeous endless orange sand

dunes through to rugged moonscape mountains.

There are beautiful beaches along the coastline

and the growth of cities such as Dubai and Abu

Dhabi has produced icons such as the tallest

building in the world, an indoor ski slope, the second

largest mosque in the world and many other jaw-

dropping feats of architecture and design.

The opportunities of meeting people from around

the world are great. In my workplace alone, there

are 16 different nationalities, including Algerian,

Philippino, South African, Sudanese, Dutch,

Palestinian and of course, Emirati Nationals. For

about three months of the year the weather is

extremely hot (in the high 40s and low 50s) and the

humidity is also extremely high, making time in the

outdoors impossible. Thankfully everything here is

air-conditioned, so summers are usually whiled away

indoors at shopping centres and movie theatres. The

winter months are spectacular, with blue skies and

daytime temperatures in the high 20s and low 30s.

O#.53#&!.8F&).&):#&2#(8:#%&(,6&5($F%&).&1(F#&):#&

most of it.

When we moved from Australia I had the support

of my gastroenterologist and GP who both wished

me the best while also insisting on staying informed

of my health condition by receiving regular blood

test results. The health system in the UAE is still

“developing” and while there are some very good

5:"%+8+(,%&:#$#4&):#&%"%)#1&+,&-#,#$(3&+%,;)&b*+)#&

up to Australian standards. For that reason, I travel

home to Australia for regular colonoscopies rather

than have them here. However, I do see a good GP

here who provides great primary care.

I have heard that there are several

gastroenterologists here in the UAE, though I prefer

to maintain contact with my gastro back in Brisbane

(%&:#&F,./%&1"&:+%).$"M&A:#&6+%#(%#&6.#%,;)&%##1&(33&

):()&8.11.,&:#$#&(,"/("4&.$&()&3#(%)&+'&+)&+%4&=;1&,.)&

%*$#&+'&+);%&6+(-,.%#6&8.$$#8)3"M&=;1&(3%.&,.)&(/($#&.'&

Living with ulcerative colitis can present a number of problems. Doing so in an environment with a “developing” healthcare system, extreme temperatures, remote desert locations with limited bathroom facilities and periods of fasting makes life is always interesting for 28-year-old Aussie expat Heide Dredge.


My Story

any support groups or organisations such as CCA,

(,6&+,&):#&#,)+$#&)+1#&/#;@#&3+@#6&:#$#&=;@#&.,3"&1#)&

one other person with IBD, who happened to also

2#&(,&0*%%+#Y

Surprisingly, Imuran is available over the counter

with no prescription. In fact, most medications in

):+%&8.*,)$"&6.,;)&$#b*+$#&(&5$#%8$+5)+.,4&(,6&'.$&):#&

few that do, the pharmacist tends to scribble the

dosage on the side of the box without checking the

5()+#,);%&,(1#&.$&=?M&&C+1+3($3"4&/:#,&=&-.&'.$&23..6&

)#%)%&()&):#&3.8(3&:.%5+)(34&=&7,6&):()&1"&,(1#&-#)%&

spelled three different ways on each of the forms (I

must be the only Heide, Hedi or Haidi in all of Abu

?:(2+YN&(,6&=&(1&$($#3"&(%F#6&).&8.,7$1&1"&,(1#&

or date of birth. The nurses who take the blood

($#&b*(3+7#6&(,6&6.&(&-..6&<.24&:./#@#$4&):#&

administration of the health-care system here does

leave a lot to be desired. If I was to experience a

!($#&*5&P).*8:&/..6N4&=&/.*36&8#$)(+,3"&<#)&:.1#&).&

Australia to be under the care of my gastro, just to

be sure.

One cultural experience we enjoy each year here

is the Holy month of Ramadan. During this month,

when Muslims fast from dawn until dusk, all cafes

and restaurants are closed during the day and it

is illegal to consume any food or drink (or to even

chew gum) in public. In order to support work

colleagues who are fasting, those of us who do not

fast are asked to refrain from consuming any food or

drinks at our desks. My husband often fasts during his

work day but it would be impossible for me to do so.

=;1&,.)&%*$#&+'&+);%&(,&=>?&):+,-4&.$&<*%)&1"&1#)(2.3+%14&

but I need to eat regularly throughout the day to

%).5&1"%#3'&5(%%+,-&.*)&.$&):$./+,-&*5M&=;1&@#$"&

-$()#'*3&):()&1"&.'78#&%#)%&(%+6#&(&5$+@()#&$..1&

where those who are not fasting can quickly duck-

in and grab a quick coffee or sandwich. During our

)+1#&+,&):#&a0_4&/#;@#&2##,&3*8F"&#,.*-:&).&#,<."&

several Iftar meals, which are held after the sun has

%#)&).&8#3#2$()#&):#&#,6&.'&):#&6(";%&'(%)M&

One genuine challenge of having UC in this part of

the world is the availability of public toilets. There

%+153"&($#,;)&1(,"&()&(33M&K.%)&$#%)(*$(,)%&(,6&

petrol stations will have them, but they usually leave

a lot to be desired in terms of cleanliness, and most

times will simply be a squat toilet or a hole in the

!..$4&/:+8:&.'&8.*$%#&:(%&+)%&./,&8:(33#,-#%&'.$&*%&

IBD patients. Toilet paper is often missing and so I

make sure I have a constant stash of tissues and

antibacterial hand wash in my hand bag at all

times.

E:+3#&=;1&.,&):#&).5+8&.'&).+3#)%4&=&/.$F&'.$&(&

company in Abu Dhabi that provides services to

farmers in the desert regions of the Abu Dhabi

Emirate (bordering Saudi Arabia). My role as

communications manager is a desk-based position

+,&.*$&:#(6&.'78#4&:./#@#$&):#$#&+%&.')#,&(&,##6&

'.$&1#&).&@+%+)&):#&7#36&.'78#%&(,6&%.1#&.'&):#&

$#1.)#&'($1%M&G,&1"&7$%)&@+%+)&.*)&+,).&):#&X+/(&

.'78#4&/:+8:&+%&.,&):#&5#$+1#)#$&.'&):#&c_15)"&

Quarter” of the UAE /Saudi desert, I was informed

by one of my Sudanese colleagues that I was the

7$%)&/.1(,&).&#@#$&%)#5&'..)&+,&):#&.'78#4&/:+8:&

has been there for 35 years. This was easy to believe

as there were no female bathroom facilities at all

(,"/:#$#&+,&):#&.'78#M&&=,&.$6#$&'.$&1#&).&*%#&):#&

bathroom, two of my British and Kiwi colleagues

:(6&).&%:..&(2.*)&T]&-*"%&.*)&.'&):#&1#,;%&

bathroom and then stand guard at the door to give

me the privacy to use the facilities - a squat loo with

IG&5(5#$&P):(,F&-..6,#%%&'.$&1"&%)(%:YNM&=)&6+6,;)&

take me long to suss out the only two petrol stations

in the entire region (approx 250km drive) with

female bathrooms, and rest assured, my visits to the

7#36&(3/("%&+,83*6#&(&%).5&()&):#%#&%)()+.,%Y

=;@#&,./&2##,&+,&$#1+%%+.,&'.$&7@#&"#($%4&(3):.*-:&=&

%)+33&:(@#&1"&-..6&6("%&(,6&1"&2(6M&&=&'##3&):()&=;@#&

learned to listen to my body and am careful with

what I eat and drink, and in making sure I get plenty

of sleep. There have been plenty of occasions

/:#$#&=;@#&.@#$6.,#&+)4&/+):&)..&1*8:&/.$F&(,6&

stress, but thankfully I seem to be able to pull these

under control with some serious R&R.

Overall, life in the UAE has its ups and downs for

someone with UC – no different to any other part of

the world, I imagine. Living abroad for these years

has been a wonderful life-changing experience

(,6&=;1&%.&-$()#'*3&):()&1"&a9&:(%&$#1(+,#6&+,&

$#1+%%+.,&6*$+,-&):+%&)+1#M&=;@#&5$.@#,&).&1"%#3'&

that I can manage the disease in a foreign, often

very challenging setting, not to mention that I have

been able to successfully adjust to very different

physical, cultural and work environments. While

Steve and I do plan to move home to Australia

sometime soon, we know that it may only be for a

few years until we move abroad again. And when

):()&)+1#&8.1#%4&=;1&8.,76#,)&):()&):#&2+--#%)&

issue weighing on our minds will not be my health,

but rather our choice of destination.


Report

The Silver Lining Ball was held at Peninsula, in

Docklands, Melbourne, on September 11, and

attended by CCA founder Angela McAvoy.

As promised, the black-tie event combined glamour

and entertainment, with a mix of formality and fun.

The evening kicked off with an introduction by

emcee comedian John Blackman, who welcomed

the guests and invited everyone to dig deep by way

.'&7,(,8+(3&53#6-#%4&5*$8:(%+,-&$('!#&)+8F#)%&(,6&

bidding for auction items.

Operatic comedy act The Three Waiters kept

the audience entertained during the meal, while

Australian Memory Champion Tansel Ali, who has

9$.:,;%4&6+%53("#6&:+%&+,8$#6+23#&1#1.$"&%F+33%&

by correctly identifying game cards chosen by

volunteers from the audience.

Tansel also joined the winner of The Apprentice

(Australia), Andrew Morello, as host of the live

auction, which featured prizes such as a dinner

for eight in a private residence cooked by the

executive chef from Eureka 89, $2050 worth of dining

@.*8:#$%&()&7@#&K#32.*$,#&$#%)(*$(,)%4&(&%+-,#6&

2009/10 series Australian cricket bat, a memory

master class with Tansel Ali, and a weekend escape

at The Golden Door Elysia (Hunter Valley).

Guests who missed out on the live auction prizes had

the opportunity to bid on the silent auction prizes,

such as tickets to the opening night of The Australian

Ballet, signed sporting memorabilia, paintings and

hotel accommodation packages.

A popular prize – particularly among women

guests - was the opportunity to win a $6000 Dia Oro

diamond, with guests paying $50 to secure one of

only 200 jewellery boxes containing a toy ring. The

lucky person whose ring exactly matched the ring

drawn at the end of the night took home the real

diamond.

The serious purpose of the night was brought home

to guests when 12-year-old Isobel Sidler explained

:./&+)&'#3)&).&3+@#&/+):&9$.:,;%&6+%#(%#M&

=%.2#3&#Q53(+,#6d&cB(@+,-&9$.:,;%&+%&3+F#&2#+,-&.,&(&

leash - when you see something you think looks fun

or something you just want to try, you always have

to try just that little bit harder to get it. For example,

in netball I never get to really play in the star

positions, or going on school camp, while everyone

+%&.*)&()&):#&8(157$#&.$&#()+,-&%*55#$&".*&($#&%)*8F&

inside taking medicine … I am also really looking

'.$/($6&).&):#&9$.:,;%&(,6&8.3+)+%&".*):&8(15&):()&

I would like to go to in the next few years. Tummy

pains are part of my life. They happen every day,

/:#):#$&=&3+F#&+)&.$&,.)4&):();%&/:"&=&:.5#&.,#&6("4&

):#$#;%&(&8*$#Ye&PC##&5(-#&f&'.$&=%.2#3;%&%).$"MN

CCA chief executive Francesca Manglaviti

emphasised that while the evening was about

celebrating the past, it was also about inviting

5#.53#&).&%:($#&):#&'*)*$#&:.5#&.'&7,6+,-&(&8*$#4&

and until then, to assist CCA to provide its support

services and programs.

CCA celebrated its silver anniversary in style, with hundreds of guests kicking up their heels to mark the organisation’s 25 years of continued support for people living with Crohn’s and colitis.


Report


Over the last 25 years CCA has worked to make life

more liveable for thousands of people diagnosed

with IBD by:

g& &5$.@+6+,-&(&,()+.,(3&:#353+,#&.''#$+,-&

information and counselling;

g& &2$+,-+,-&5#.53#&).-#):#$&):$.*-:&%*55.$)&-$.*5&

networks where they can share experiences

and learn new ways of coping;

g& &5$.@+6+,-&$#-*3($&.,-.+,-&#6*8()+.,&%#1+,($%&+,&

major city and regional hospitals to help people

make sense of what it means to live with an

incurable bowel disease;

g& &'*,6+,-&$#%#($8:&).&7,6&2#))#$&1(,(-#1#,)&

techniques and eventually a cure; and

g& &$*,,+,-&".*):&8(15%&).&:#35&)##,(-#$%&2*+36&

their support networks and raise their self

esteem.

These valuable services would not have been

possible without the assistance of the many

volunteers, sponsors, supporters and friends who

contributed their time, expertise and resources of

over the last 25 years.

CCA wishes to thank all of the CCA members who

attended the ball or helped by donating goods

and services for auction. CCA also appreciates

the support of our ball sponsors, Orphan Australia,

Abbott, Nycomed and Perfect Events.


Fundraising

CHRISTMAS APPEAL

>[&,./&1#12#$%&/+33&:(@#&$#8#+@#6&990;%&

annual Christmas Appeal letter. We are aware

that Christmas is a time that can place an added

%)$(+,&.,&7,(,8#%4&2*)&(,"&'*,6%&/#&$#8#+@#4&2#&

it a donation in lieu of a gift to a friend or a direct

donation, will help us to ensure CCA can run a full

complement of programs in the New Year.

Thank you to those who have already generously

responded. All donations over $200 will be

acknowledged in the Annual Report.

CHRISTMAS CARDS NOW AVAILABLE

990;%&:+-:Hb*(3+)"4&'.+3H#12.%%#6&9:$+%)1(%&8($6%&

are available for purchase in four designs. For just

$15 you receive 10 cards in a single design. The

cards are a great way to raise funds for CCA, as well

as raise awareness of IBD.

To order phone 1800 138 029 or go to the website

to view the selection and purchase online. If your

selection is unavailable CCA will contact you to

arrange and alternative.

This year, CCA is also providing people with

the option of sending loved ones an E-Card for

Christmas in lieu of a gift, which is a great option for

the person who already has everything.

By following the link from our website, people can

choose from a variety of designs and a donation

amount. The recipient will receive their electronic

card and personal message, with an explanatory

note saying the sender has donated money to CCA.

CHANGING LIVES CHALLENGE

AB_&"#($;%&9:(,-+,-&X+@#%&9:(33#,-#&:(%&6$(/,&).&

a close, with the completion of four more fun runs

since the last edition.

CCA had four Changing Lives Challenge team

members taking part in the Bridge to Brisbane on

August 29, raising $600.

CCA also had a very enthusiastic father-daughter

team taking part in the City to Surf Perth, held on

August 29, while six people in South Australia took

part in the City-Bay Fun Run on September 19, raising

raising $2445 in support of CCA.

Unfortunately, no members registered to take part

in the Point to Pinnacle run in Tasmania, but there is

(3/("%&,#Q)&"#($Y

A:(,F%&).&):#&'(,)(%)+8&#''.$)%&.'&):#&Uh&7)&(,6&#(-#$&

participants and their sponsors, CCA reached its

$25,000 Changing Lives Challenge fundraising

)($-#)M&I./&%*11#$&+%&:#$#4&+);%&(&-$#()&)+1#&).&%)($)&

-#))+,-&7)&%.&/#&8(,&6.&#@#,&2#))#$&,#Q)&"#($M

DURAL GOLF CLASSIC

ALTHOUGH rain was forecast, golf balls were the only

thing falling from the morning sky when the Dural

Community Golf Classic kicked off on October 13.

J.$&):#&7$%)&)+1#4&?*$(3&R.)($"&93*2&(,6&?*$(3&R.*,6&

Corner Chamber of Commerce joined forces to host

the event, held at Riverside Oaks Golf Resort.

A record 132 golfers took part in the day, which

kicked off with an early-morning sausage sizzle, and

a helicopter dropping numbered golf balls for the

nearest-the-pin prize.

Organiser Paul Wolf said the participants and

sponsors raised more than $16,000, which will be

allocated to four charities, including CCA.

HOW DOES YOUR GARDEN GROW? THE answer is very well if you are Julie and David

Thompson.

In September the Sydney couple opened their

E(:$..,-(&-($6#,&).&):#&5*23+8&'.$&):#&7$%)&)+1#&

(%&5($)&.'&ICE;%&G5#,&D($6#,&C8:#1#4&(,6&@#$"&

kindly elected to donate a share of the proceeds to

CCA.

A:#&/##F#,6&#@#,)&/(%&.$-(,+%#6&2"&):#&8.*53#;%&

friend, Marita Minns, who has a family history with

IBD.

Marita said about 260 people visited the North Shore

garden over two days, and showed equal interest

+,&):#&6+%53("&.'&+,'.$1()+.,&.,&=>?&(%&):#&-($6#,;%&

beautiful blooms.

“What was interesting was the community being so


Fundraising

+,)#$#%)#6&+,&/(,)+,-&).&*,6#$%)(,6&/:()&9$.:,;%&

and ulcerative colitis were,” Marita said. “Raising

):#&5*23+8;%&(/($#,#%%&.'&):#%#&8.,6+)+.,%&/(%&

invaluable.”

Marita also acknowledged the support of all the

CCA volunteers who contacted her offering their

time and services to make the event such a success.

“The member support was overwhelming,” she said.

“I think it provided an opportunity for members

to share their journey, and provided support to

those who are currently not enjoying the best of

health. I hope it may inspire others to have a go

at fundraising. I certainly found that people are so

generous with their time, and willing to help in many

ways.”

The event raised $925 for CCA.

RALLYING RAISES REVENUE

PORT Macquarie reverberated to the sounds of

throbbing engines on September 11, as more than

200 motorbikes set off on in convoy for the 90-minute

ride to Long Flat to raise funds for CCA.

The motorcycle rally was organised by Peter Duk, a

member of the Ulysses Club for older motocyclists.

O#)#$4&/:.&:(%&9$.:,;%&6+%#(%#4&%(+6&:#&/(%&53#(%#6&

with the number of clubs that turned out to support

the rally, including the Old Holden Car Club, and the

American Motorcycle Club (pictured).

Prizes were awarded for the best-dressed bikes and

riders, and participants enjoyed a display of unique

and vintage bikes, as well as a barbeque lunch and

concert.

The event raised $3000 for CCA.

Research Major Donations

Matchpoint Consulting $4680

$1000-$3000

A Shanaha, L Longden

$200-$499

H Bainger, L McGuire

General Donations Major Donations

T & M Yencken $8000

$1000-$3000

Smartline

$500-$999

Hamilton & Hamilton Insurance Brokers Pty Ltd,

R Haneman, J Sheehan, K Temple

$200-$499

A & I Derimboglou, K Harkin, J Roberts, I Whiting,

S Zelnik, M McKay, A Patane, P Re, L Smith,

i&A:.15%.,4&K&E:+))#,4&i&X##4&L&G;?/"#$4&

Manor Fruits Pty Ltd

Community Fundraisers JA Gane, E Mariani, A Sharma, J Webb Ware,

H Schumann, S Taylor, R Baron, K Zantuck, S Taylor,

K Eldred, J Zantuck, K Caval, R Kelly, K Huntington,

S Martin, T Nelson, A Stevens, A Smith, K Beadman,

J Strugnell, D Jenner, S Pickwell, M Ankrays, J Hart,

C Schumann, P Poole, A Finch, K Phillips,

S de Jong, F Maye, M Corley, B Mackay,

C Camakaris, N Robinson, T Maye, D Papas, L Egan,

S Sternberg, K Taylor, E Hamilton, M Sidler, V Shorter,

A & D Davis, L, D & K Chandler, K Neal, M Pittorino,

CPG Australia Pty Ltd, Scott Parke Homes, Suncorp

– AMP Customer Service, AWMA Pty Ltd, West

Moreton Anglican College


Research

CCA recently conducted a national survey of its

members to gain a clearer understanding of some

of the issues that people living with IBD may be

experiencing as outpatients in the public health

system.

The short, online survey looked at how long patients

wait before seeing their IBD specialist, as well as their

access and experiences with IBD nurse specialists.

2616 members from metropolitan, regional and rural

Australia were invited to participate in the survey,

of which 311 people responded. The survey asked

a combination of qualitative and quantitative

questions to provide a holistic understanding of the

issues and an avenue for participants to tell us what

else is important to them.

Waiting times

A:#&5$#3+1+,($"&7,6+,-%&%:./&):()&hT&5#$&8#,)&.'&

respondents can wait up to eight weeks to see their

specialist in a public hospital, 20 per cent have

waited between two and four months, and 10 per

cent have experienced wait times longer than four

months, with three people reporting a wait of up to

nine months to see their specialist.

The majority of people responding to the survey

(80 per cent), saw their specialist in a metropolitan

hospital, and travel no longer than one hour to get

to their appointment. There is a possibility that due

to the large metropolitan representation, the results

of this survey may not be representatives of the

experiences of our rural and regional members. A

'*$):#$&%)*6"&+%&,##6#6&%5#8+78(33"&(1.,-&1#12#$%&

from regional and rural areas to determine if their

experiences regarding access to IBD services in the

5*23+8&%"%)#1&($#&8.,%+%)#,)&/+):&):#&7,6+,-%&.'&):+%&

survey.

Services accessed between specialists visits

85 per cent of people surveyed had experienced (&!($#&*5&2#)/##,&):#+$&$#-*3($3"&%8:#6*3#6&

specialist visits. During periods of relapse, 26 per

cent made an appointment to see their GP, 20 per

cent had gone to their emergency department

of their hospital and 18 per cent made a priority

appointment to see their specialist in a private clinic.

A further 15 per cent made an appointment to see

their specialist in a public hospital. Other options

showed 8 per cent called their IBD nurse and 7 per

cent went to see their complementary therapist.

IBD nurse specialist services

When asked if their hospital employed a specialist

IBD nurse, half of the respondents answered that

):#"&6+6,;)&F,./4&/:+3#&jh&5#$&8#,)&(,%/#$#6&):()&

their hospital provided a specialist nurse to assist

them with their IBD needs. Importantly, asked if

they would like to have the option of accessing the

services of an IBD nurse, an overwhelming 85.5 per

cent said that they would like to have this option.

Experiences with IBD nurse care was largely positive,

(%&#Q#153+7#6&2"&8.11#,)%&%*8:&(%&):#&'.33./+,-d

“The gastro-liaison nurses at the John Hunter Hospital

are awesome and I call them to make emergency

appointments, get my test results and to ask

questions of my specialist in between appointments

and waiting times … The nurses also speak to my

specialist and ask her to call me at the end of the

day where possible, especially if there is a long

wait before my next appointment at the hospital. I

8.*36,;)&%*$@+@#&/+):.*)&):#1Me

And: “The main outpatient care I use now is that

of the stomal therapists. At Concord they are

(1(Z+,-4&2*)&=&F,./&=&/.*36&:(@#&2#,#7)#6&'$.1&

the support of an IBD nurse in the many years prior

).&1"&+3#%.).1"4&5($)+8*3($3"&/:#$#&):#&-(%)$.;%&6.&

not have a lot of time to consult with patients. Given

how emotional certain situations can be, seeing

an IBD nurse with more time and sympathetic ear

would be invaluable. If they could also reduce the

,##6&).&%##&1+%*,6#$%)(,6+,-&DO;%&+)&/.*36&(3%.&

help greatly.”

However, some of the survey responses showed

it was unclear if people were experiencing the

support of a specialist IBD nurse or if they were

confusing the role with that of the stoma therapist or

a general gastroenterology nurse who proved care

across gastroenterology conditions. This suggests

there is a role for CCA to educate members about

the different nursing roles and to conduct further

$#%#($8:&%5#8+78(33"&($.*,6&):#&$.3#&(,6&+15(8)&.'&

IBD nurses on improving the health and wellbeing of

people living with IBD.

By Francesca Manglaviti


Research

9RGBI;C&6+%#(%#&+%&(,&+,8*$(23#&8.,6+)+.,&(%%.8+()#6&/+):&8:$.,+8&+,!(11()+.,&.88*$$+,-&anywhere in the gastrointestinal tract. It is a major problem throughout the world, occurring in children, adolescents and adults. Over the past 20 years, an increase in incidence, especially in children, :(%&2##,&+6#,)+7#6&+,&1(,"&3.8()+.,%4&+,83*6+,-&Australia, the US and Europe.

A:#&$#(%.,&'.$&9$.:,;%&6#@#3.51#,)&+%&*,83#($M&G,#&school of thought is that it arises from a complex interplay between human and environmental factors, such as infectious microbial agents. The interaction between human genes and external pathogens leads to disease initiation, and results in the persistent damage to the gastrointestinal tract.

The association between human genes, host microbes and external pathogens is very complex and not well understood. Research during the past 6#8(6#&:(%&+6#,)+7#6&1(,"&-#,#)+8&(3)#$()+.,%&):()&may predispose individuals to disease. However, genetic alterations alone cannot explain this increase in disease.

G*$&%)*6"&()&):#&K*$6.8:&9:+36$#,;%&R#%#($8:&=,%)+)*)#&()&A:#&R."(3&9:+36$#,;%&B.%5+)(3&+,&`+8).$+(&focuses on detection and characterisation of +,'#8)+.*%&(-#,)%&()&):#&)+1#&9$.:,;%&+%&6+(-,.%#6&in children. We use cutting-edge molecular biology technology to analyse the sample collection. Understanding the precise role that infectious agents play in children at onset of the disease would be a major achievement, and could open a new chapter in therapy and prevention.

A:#&.2%#$@#6&+,8$#(%#&.'&9$.:,;%&/.$36/+6#&8.*36&be due to the spread of an infectious agent, or agents. Many different infectious agents have been +153+8()#6&+,&):#&8(*%()+.,&.'&9$.:,;%M&B./#@#$4&the interpretation of research results has been inconsistent and inconclusive, perhaps because almost all studies have examined adult patients with chronic disease. Many of these patients had been receiving immunosuppressive drugs and .):#$&1#6+8()+.,%&8(5(23#&.'&(3)#$+,-&-*)&!.$(M&

Thus, further studies are needed to identify and 8:($(8)#$+%#&5.)#,)+(3&1+8$.2+(3&)$+--#$%&.'&9$.:,;%4&present as close to onset as possible.

Part of our ongoing research program has involved a series of experiments designed to identify infectious agents at initial endoscopic examination in children prior to any treatment. In preliminary studies involving about 180 children, we have +6#,)+7#6&K"8.2(8)#$+*1&(@+*1&5($()*2#$8*3.%+%&+,&]V&5#$&8#,)&.'&8:+36$#,&/+):&9$.:,;%M&B./#@#$4&:(3'&.'&):#&8:+36$#,&/+):&9.:,;%&6+6&,.)&:(@#&(,"&1"8.2(8)#$+(&+6#,)+7#6M&a%+,-&):#&3()#%)&1.3#8*3($&biology techniques, we are able to screen simultaneously for thousands of microbial signatures +,&(&%+,-3#&2+.5%"&)+%%*#M&E#&:(@#&+6#,)+7#6&%#@#$(3&other candidate viral and bacterial agents that may have a role in the disease initiation. From these preliminary studies, we hypothesise that one or more microbial agent could infect the gut in susceptible individuals, and trigger an inappropriate and ongoing activation of the immune system, leading to gut damage.

The complex nature of this disease leads us to also believe that the presence of an infectious agent is not the only component required for disease initiation. It is possible that the microbe will only trigger disease when the correct set of altered human genetic factors is present within the +,6+@+6*(3M&A:*%4&):#&8.12+,()+.,&.'&%5#8+78&-#,#%&and a microbe results in disease.

Preliminary studies are underway in our laboratory ).&+6#,)+'"&):#&%5#8+78&-#,#%&$#%5.,%+23#&'.$&9$.:,;%&and how they associate with microbial infections in children. The results are being assessed on an ongoing basis, but would hope to have some strong evidence regarding prime triggers in next couple of years. This would include characterisation of the agent as well as a small prevalence study. This information will help us understand why some infectious agents are present in some individuals but not in others. We believe this combined approach will provide new insights into the likely triggers of 9$.:,;%&6+%#(%#4&5(@+,-&):#&/("&).&8.,6*8)&3($-#&scale screening, and start to develop targeted therapies.

Dr Carl Kirkwood is a Senior Research Fellow & group

leader with the Enteric Virus Research Group at

Murdoch Children’s Research Institute, Royal Children’s

Hospital, Melbourne.


!"#$"#%&'()*&*+"%%,+-&.+/(#0-&$"-,)-,&"-&)&1)2/+&-*,3&)4/#%&*(,&3)*(&*/&5#$"#%&a cure. Here Dr Carl Kirkwood explains how he and his team are working to discover the cause of Crohn’s in children.


International Research

shows that different dietary components can have

powerful effects on the movement of bacteria

through the bowel. We have known for some time

):#&-#,#$(3&:#(3):&2#,#7)%&.'&#()+,-&53(,)(+,&

and broccoli, which are both high in vitamins and

minerals, but until now we have not understood

:./&):#"&8(,&2..%)&):#&2.6";%&,()*$(3&6#'#,8#%&

(-(+,%)&+,'#8)+.,&8.11.,&+,&9$.:,;%&5()+#,)%M&G*$&

work suggests that it might be important for patients

with this condition to eat healthily and limit their

intake of processed foods.”

Provexis research and development manager Peter

Laing said he was hopeful that a new medical food

8.,)(+,+,-&%.3*23#&53(,)(+,&72$#%&8.*36&:#35&:(3)&

the progression and return of the disease.

The research is published in the September edition

of Gut.

Article sourced from the University of Liverpool.

DISEASE RECURRENCE NOT ALWAYS FELT

TB_&9$.:,;%&?+%#(%#&08)+@+)"&=,6#Q&P9?0=N4&/:+8:&relies on patient symptoms to determine whether

.$&,.)&9$.:,;%&6+%#(%#&+%&(8)+@#4&1("&,.)&$#3+(23"&

+,6+8()#&/:#):#$&(&5()+#,);%&6+%#(%#&:(%&$#)*$,#6&

after corrective surgery, according to a study

5*23+%:#6&+,&0*-*%);%&+%%*#&.'&=,!(11().$"&>./#3&

Diseases.

According to Dr Miguel Regueiro, associate

professor of medicine and co-director of the

=,!(11().$"&>./#3&?+%#(%#&9#,)#$&()&):#&a,+@#$%+)"&

of Pittsburgh School of Medicine, the CDAI relies

on patients reporting their symptoms to determine

/:#):#$&.$&,.)&9$.:,;%&6+%#(%#&:(%&$#8*$$#6&.$&

gone into remission after surgery.

cA:#&,()*$(3&8.*$%#&.'&9$.:,;%&6+%#(%#&.')#,&+%&

symptom-free,” explained Dr Regueiro. “The disease

can present silently. In fact, many patients with

9$.:,;%&1("&:(@#&:(6&6+%#(%#&'.$&"#($%&/+):.*)&

having symptoms. Similarly, after surgery, most

patients feel quite well for many years. We have

'.*,6&):()&1.%)&5()+#,)%&/+):&$#8*$$#,)&9$.:,;%&

disease after surgery also do not have symptoms.

This is a concern because many patients with post-

%*$-+8(3&9$.:,;%&6+%#(%#&$#8*$$#,8#&/+33&*3)+1()#3"&

need another surgery and if they cannot feel their

disease, adequate treatment may not be started.

Because of this, we need to look for objective

BANANAS COULD HOLD KEY TO TREATMENT

SCIENTISTS at the University of Liverpool

& & &:(@#&'.*,6&):()&%.3*23#&72$#%&&&

found in plantain, a type

of large banana,

could be used to

treat patients with

& & & &9$.:,;%&6+%#(%#M

Researchers are now working

with biotechnology company Provexis to test a

new plantain-based food product that could treat

9$.:,;%&5()+#,)%M&

Scientists have previously shown that people with

9$.:,;%&:(@#&+,8$#(%#6&,*12#$%&.'&(&c%)+8F"e&)"5#&

.'&_M&8.3+&(,6&/#(F#,#6&(2+3+)"&).&7-:)&.''&+,@(6+,-&

intestinal bacteria. The team investigated whether

6+#)($"&(-#,)%&8.*36&+,!*#,8#&_M&8.3+&#,)#$+,-&):#&

lining of the gut.

The sticky E. coli are capable of penetrating the

gut wall via special cells, called M-cells that act as

“gatekeepers” to the lymphatic system. In patients

/+):&9$.:,;%4&):+%&3#(6%&).&8:$.,+8&+,!(11()+.,&+,&

):#&-*)M&C8+#,)+%)%&'.*,6&):()&53(,)(+,H%.3*23#&72$#%&

prevented the uptake and transport of E. coli across

M-cells. They compared these results with tests on

5.3"%.$2()#HkV4&(&'()&#1*3%+7#$&*%#6&+,&5$.8#%%#6&

food to bind ingredients together. The tests revealed

that polysorbate had the opposite effect to plantain

72$#%4&(,6&#,8.*$(-#6&):#&1.@#1#,)&.'&2(8)#$+(&

through the cells.

Scientists are now conducting clinical trials to test

/:#):#$&(&1#6+8(3&'..6&8.,)(+,+,-&53(,)(+,&72$#%&

8.*36&F##5&9$.:,;%&5()+#,)%&+,&$#1+%%+.,M&

Liverpool University Professor Jon Rhodes, part of the

Liverpool Biomedical Research Centre (BRC), said:

c9$.:,;%&6+%#(%#&(''#8)%&5#.53#&'$.1&(33&.@#$&):#&

world, but it is much more prevalent in developed

8.*,)$+#%4&/:#$#&(&6+#)&.'&3./&72$#&(,6&5$.8#%%#6&

foods is common. There has been a rapid increase

in incidence of the disease in Japan, for example,

which now has more of a Western, processed-food

diet. Dietary factors and the increased numbers of E.

8.3+&+,&):#&+,)#%)+,#&.'&9$.:,;%&5()+#,)%&%*--#%)#6&).&

us that there could be a link between the food that

we eat and the transportation of bacteria in the

body.”

?$&>($$"&9(152#334&'$.1&):#&a,+@#$%+)";%&=,%)+)*)#&

of Translational Medicine, added: “This research


International Research

evidence of the disease instead of relying on

patients to report how they feel.”

The study sought to discover whether disease

recurrence detected by endoscopy agreed with

patient symptom reports. Twenty-four patients

/+):&9$.:,;%&6+%#(%#&/#$#&$(,6.13"&(%%+-,#6&).&(&

post-operative clinical trial that assessed disease

recurrence. According to the results, half of the

patients went into remission after surgery while

the other half did not, and there was little or no

relationship between the return of the disease and

the symptoms patients reported.

c>#8(*%#&5()+#,)&%"15).1%&6.,;)&+,6+8()#&/:#):#$&

9$.:,;%&6+%#(%#&:(%&$#)*$,#64&/#&,##6&).&8:(,-#&

how we consider symptom-based care and begin

utilizing objective evidence, such as endoscopy,

to understand the course the disease takes in

individual patients. This way, we can detect the

disease early, begin the correct treatment, and

potentially prevent future complications and the

need for more surgery,” said Dr Regueiro.

Article sourced from University of Pittsburgh School of

Medicine.

CROHN’S SURGERY LOWER THAN EXPECTED

A NEW multi-centre study of 854 children with

C$.:,;%&6+%#(%#&%:./%&(&7@#H"#($&8*1*3()+@#&$+%F&.'&2./#3&%*$-#$"&+%&%+-,+78(,)3"&3./#$&):(,&$#5.$)#6&

+,&$#8#,)&%)*6+#%M&A:#&7,6+,-%&.'&):#&%)*6"4&3#6&

2"&B(%2$.&9:+36$#,;%&B.%5+)(34&(3%.&+,6+8()#&):()&

children diagnosed between ages 13 and 16

had an increased risk of bowel surgery, and that

a common treatment that begins at diagnosis -

immunomodulator therapy - did not alter the risk

of surgery. The study is published in the September

2010 edition of Clinical Gastroenterology and

Hepatology.

Dr Neal LeLeiko, director of pediatric

-(%)$.#,)#$.3.-"&(,6&,*)$+)+.,&()&B(%2$.&9:+36$#,;%&

Hospital, led a multi-centre observational study

of patients under 16 years of age with newly

diagnosed IBD. All of the patients were enrolled in

):#&O#6+()$+8&=,!(11().$"&>./#3&?+%#(%#&R#%#($8:&

Group (PIBDRG) Registry from 26 sites across the

country. The goal of the study was to examine the

+,8+6#,8#&.'&9$.:,;%H$#3()#6&%*$-#$"&+,&5(#6+()$+8&

patients and to examine the effect of starting

immunomodulator therapy within 30 days of

diagnosis.

?$&X#X#+F.&%(+6d&cA:#&,()*$(3&:+%).$"&.'&9$.:,;%&

disease often includes bowel surgery, with recent

studies reporting surgery risks at one year after

diagnosis as high as 34 per cent and as high as 47

5#$&8#,)&()&7@#&"#($%&'.33./+,-&6+(-,.%+%M&=,&):+%&

study, we examined the current incidence of bowel

surgery.”

With an increase in the use of immunomodulators

P1#6+8()+.,%&):()&8.,)$.3&+,!(11()+.,&2"&

suppressing the immune system) as a common

therapy at the time of diagnosis in recent years, the

researchers also examined its impact.

?$&X#X#+F.&%(+6d&cE#&:(@#&+6#,)+7#6&.36#$&(-#&

at diagnosis and greater disease severity to be

associated with an increased risk for bowel surgery,

(3.,-&/+):&8#$)(+,&)"5#%&.'&6+%#(%#M&A:#&7,6+,-%4&

however, indicate that other studies suggest an

almost two times greater incidence of surgery than

what we found in our study.”

The researchers also found that children diagnosed

between the ages of 13 and 16 were at greater risk

for surgery, however they found no evidence that

the early use of immunomodulators was a factor

+,&7@#H"#($&%*$-+8(3&.*)8.1#%M&A:#"&(3%.&'.*,6&,.&

link between gender, race or family history of IBD as

factors that would increase the risk of surgery.

?$&X#X#+F.&8.,83*6#6d&cG*$&%)*6"&7,6+,-%&

indicate that changing disease behaviour over

)+1#&+,!*#,8#%&):#&$+%F&.'&%*$-#$"4&(,6&)$#()1#,)%&

focused on early intervention to alter the natural

course of the disease will need to be assessed in

studies that ideally involve randomised controlled

trials.”

Article sourced from Lifespan.


Research

What do we mean by “colitis”?

A:#&)#$1&c8.3+)+%e&+,&):#&8.,)#Q)&.'&=,!(11().$"&

Bowel Disease (IBD) can be rather confusing, given

that individuals can be diagnosed with either

*38#$()+@#&8.3+)+%4&9$.:,;%&8.3+)+%4&.$&+,6#)#$1+,()#&

colitis. The last of these – indeterminate colitis – tends

).&2#&$#%#$@#6&'.$&5()+#,)%&/:.&6.&,.)&83#($3"&7)&+,).&

.,#&.'&):#&7$%)&)/.&-$.*5%4&(,6&/:.&6#@#3.5&%#@#$#&

disease requiring surgery (colectomy). Together, all

types of IBD have a frequency of approximately

1 in 250 of the Australian population so there are

between 60,000 and 80,000 Australians living with

these disorders today. Of these, over 50 per cent will

have a colitis, indicating that their disease is limited

to the large bowel or colon, and falling into one of

the three groups given above.

Disease activity and need for surgery

There is a wide spectrum of disease severity in

patients with colitis. Many patients will be well

controlled on standard medical therapy such

as sulfasalazine or a similar class of drug, while

others will require more intensive treatment,

including steroids (e.g. prednisone, panafcort) and

immunosuppressants (azathioprine, Imuran). Patients

admitted to hospital for the treatment of their

8.3+)+%4&6*#&).&(&!($#&.'&):#+$&6+%#(%#&.$&(%&(&$#%*3)&

.'&(&%#@#$#&7$%)&5$#%#,)()+.,4&.')#,&$#b*+$#&+,)#,%+@#&

medical therapy, including intravenous steroids and

sometimes additional treatment with cyclosporine or

+,!+Q+1(2M&A:#%#&())(8F%&8(,&2#&83(%%+7#6&(%&c%#@#$#&

8.3+)+%e&(,6&5()+#,)%&($#&()&%+-,+78(,)3"&+,8$#(%#6&

risk of needing surgery. In fact, a recent study from

Oxford in the UK, involving 750 patients, indicates

that the risk of needing surgery rises from as low as

3.4 per cent in those individuals who have never

needed hospital admission to almost 40 per cent in

those who have been admitted with at least one

severe attack of colitis1.

Treatment options for severe colitis

While federally-funded treatment options for

+,6+@+6*(3%&/+):&9$.:,;%&6+%#(%#&:(@#&2##,&

expanded to include biologic drugs such as

+,!+Q+1(2&(,6&B*1+$(&):$.*-:&):#&O:($1(8#*)+8(3&

>#,#7)%&C8:#1#&PO>CN4&)$#()1#,)&.5)+.,%&'.$&

patients with severe colitis, which is due to ulcerative

colitis or indeterminate colitis, remain relatively

limited. There is currently no biologic drug on the

PBS for this indication, despite good evidence

%*55.$)+,-&):#&$.3#&.'&+,!+Q+1(2&(%&c$#%8*#e&):#$(5"&

for patients with severe colitis who have not

responded to intravenous steroids. There is also a

perception among some stakeholders that surgery

represents a “cure” for severe colitis. Although this

may be the case for some individuals, it does not

apply to the majority given the increasing frequency

of pouchitis with time in those patients who choose

pouch surgery, and the clear differences that exist

when comparing normal bowel function with pouch

bowel function and quality of life following surgery

for severe colitis.

Who will get severe colitis?

At this stage we cannot predict who may develop

severe colitis. However, patients with this form of IBD

will often present at a younger age and earlier in

their disease course. This underlines the importance

(,6&%+-,+78(,8#&.'&)$"+,-&).&.2)(+,&%*55.$)&'.$&

both currently available treatments that are safe

and effective, and to support efforts that identify

predictors of severe disease and novel therapies.

R#8#,)&-#,#)+8&%)*6+#%&:(@#&+6#,)+7#6&1.$#&):(,&

]V&-#,#%&):()&($#&%+-,+78(,)3"&+153+8()#6&+,&):#&

development of IBD, of which at least 20 may

increase the risk of colitis. Genetic studies within

Australia and New Zealand co-ordinated by the

ANZ IBD Consortium indicate that individuals with

severe colitis, in particular those that require surgery,

may carry an increased genetic risk of developing

the disease as compared to those with milder forms

of the disease. Further studies may therefore be

useful in trying to identify markers that are highly

%5#8+78&).&):.%#&/+):&%#@#$#&6+%#(%#M&A:+%&1("&(33./&

clinicians to better target treatment based on an

Australian researchers have launched a new study into severe colitis. Here,

gastroenterologist Graham Radford-Smith explains the different types of colitis,

and how this new study could help to predict disease severity.


Research

+,6+@+6*(3&5()+#,);%&$+%F&.'&%#@#$#&6+%#(%#4&5#$:(5%&2"&

commencing more aggressive immunosuppressive

treatment at an earlier stage in an individual

5()+#,);%&1(,(-#1#,)&53(,4&):*%&5.)#,)+(33"&

reducing the risk of a severe attack.

Can you assist our severe colitis research study?

Although there are many patients across Australia

who have suffered a severe attack of colitis, some

of whom have required surgery for their IBD, only

a limited number have had the opportunity to

take part in research studies. In 2011, the ANZ IBD

Consortium will be conducting a Severe Colitis

Research Study. We are interested in recruiting

patients with a history of severe colitis (ulcerative

8.3+)+%4&9$.:,;%&8.3+)+%4&.$&+,6#)#$1+,()#&8.3+)+%N&/:.&

have required at least one admission to hospital

since their diagnosis, to receive intensive medical

therapy, including intravenous steroids. This includes

patients who have also required intravenous

8"83.%5.$+,#4&+,!+Q+1(2&.$&%*28*)(,#.*%&B*1+$(&+,&

addition to intravenous steroids, for the treatment

of their colitis, and those who have required surgery

(colectomy) – either a pouch or a permanent

ileostomy.

Patients who are eligible for the study are those who:

g& &&:(@#&2##,&6+(-,.%#6&/+):&*38#$()+@#&8.3+)+%4&

9$.:,;%&8.3+)+%4&.$&+,6#)#$1+,()#&8.3+)+%l&AND

g& &:(@#4&%+,8#&):#&6+(-,.%+%4&#Q5#$+#,8#6&(,&

episode of severe colitis requiring admission to

hospital to receive intensive medical therapy

with intravenous steroids.

Any patients who meet the above criteria are

eligible, including those who have also required

+,)$(@#,.*%&8"83.%5.$+,#4&+,!+Q+1(2&.$&%*28*)(,#.*%&

Humira in addition to intravenous steroids, for the

treatment of their colitis, and those who have

required surgery (colectomy).

Requirements of the research study

As a participant, you will be asked to complete two

written questionnaires that include questions on

your general health and your IBD. We will require

your consent to approach the specialist(s) who are,

or were, involved in your management at the time

of your severe colitis (and surgery if applicable), to

obtain copies of reports relating to your illness and

treatment at that time. Please note, by taking part

in this study your medical care will not be taken over

by the research team but will remain in the hands of

your usual physician or GP.

You will be asked to provide a blood sample for

genetic and protein studies in our search for markers

that predict severe disease and the associated

%+-,+78(,)3"&+,8$#(%#6&$+%F&.'&,##6+,-&%*$-#$"M&[.*&

will not be required to visit a hospital or meet with

the researchers in person.

If you would like to register your interest in

participating in the study, email IBDresearch@qimr.

edu.au with the subject line “Severe Colitis Study”

and include your full name, date of birth, postal

address and daytime telephone number. You will

then be contacted by a researcher who will explain

the study in more detail and answer questions about

the study.

Associate Professor Graham Radford-Smith is a

member of the ANZ IBD Consortium and works at the

Royal Brisbane and Women’s Hospital and at the

Queensland Institute of Medical Research.

References

1. Dinesen LC, Walsh AJ, Protic MN, Heap G, Cummings F, Warren BF, George B, Mortensen NJM, Travis SPL. The pattern and outcome of acute severe colitis. i.*$,(3&.'&9$.:,;%&(,6&9.3+)+%&\VTVl&U&PUNd&UjTHUjhM


Complementary Therapy

MOST cultures, including the West, have a continuous history of the use of substances from

nature to treat illness. Until recently, most Western

medicines were based on plants and other

natural substances. Herbal medicine is becoming

increasingly popular and accepted as, if used

properly, it is safe, natural and effective. Herbal

medicine can be used to assist people living with

9$.:,;%&6+%#(%#&(,6&*38#$()+@#&8.3+)+%&2"&2..%)+,-&

the immune system, improving general wellbeing

(,6&6#8$#(%+,-&+,!(11()+.,&+,&):#&2./#3M&&K(,"&

drugs commonly prescribed for these conditions

have potential adverse side effects. It is therefore

important to identify well-tolerated medicines that

can help induce and maintain remission.

Note: Herbal medicine can usually 0 be used

safely in conjunction with pharmaceutical

drugs. All you need is accurate information and

advice. The best source of this information is your

treating gastroenterologist, GP or herbalist. Self-

administration without professional advice can

be ineffective or dangerous. Even though most

specialists and GPs have no training in herbal

medicine, they will receive information about

any reactions and contraindications between

1#6+8+,#%M&&0&b*(3+7#6&:#$2(3+%)4&#+):#$&9:+,#%#&

medicine practitioner or naturopath, will be able to

prescribe herbs that could help you.

Herbal medicine is the use of mostly plant parts

(leaves, twigs, bark, roots and seeds) to treat illness.

Used properly, the following herbs and supplements

:(@#&2##,&%:./,&).&6#8$#(%#&+,!(11()+.,&+,&

the gut, protect the lining of the bowel and boost

immunity:

Turmeric Turmeric may have a protective role in ulcerative

colitis through regulation of oxidant/anti-oxidant

balance and modulation of the release of some

+,!(11().$"&(-#,)%M1

Omega-3 fatty acids Some studies have found that omega-3 fatty acids,

'.*,6&+,&7%:&.+34&1("&$#6*8#&+,!(11()+.,&+,&5#.53#&

The Chinese have advocated the remedying virtues of herbs for thousands of years. Here, Chinese medicine practitioner Dr Elaine Hickman provides an overview of the herbs believed to provide the best outcomes for people living with IBD.


Complementary Therapy


/+):&9$.:,;%&6+%#(%#M&&K.$#&$#%#($8:&.,&.1#-(Hj&

fatty acids is needed, especially at differing doses,

because not all studies have found a positive effect.

There were no serious side effects in any of the

studies.2

Glutamine

Glutamine is an essential amino acid is known

to play a key role in maintaining the integrity

of the intestinal mucosa (lining). Glutamine

supplementation has been shown to reduce

intestinal permeability (Hond 1999), prevent mucosal

atrophy and maintain gut integrity (Van der Hurst

1993).3

Probiotics Probiotics are living microorganisms that are thought

).&2#,#7)&:#(3):&2"&(3)#$+,-&):#&-$./):&.'&2(8)#$+(&

+,&):#&+,)#%)+,#%&):#$#2"&$#6*8+,-&+,!(11()+.,M&

Probiotics have been found to be effective in

1(,(-+,-&+,!(11().$"&2./#3&6+%#(%#M&A:#"&:#35&

control the number of potentially harmful bacteria,

$#6*8#&+,!(11()+.,4&(,6&+15$.@#&):#&5$.)#8)+@#&

mucus lining of the gut.4

Oral aloe vera gel has been found in studies to

:(@#&(,&(,)+H+,!(11().$"&#''#8)&+,&):#&2./#3M]&

Boswellia has been found to block chemical

$#(8)+.,%&+,@.3@#6&+,&+,!(11()+.,M&&a,3+F#&(,)+H

+,!(11().$"&1#6+8()+.,4&>.%/#33+(&6.#%,;)&%##1&

to cause gut irritation that can occur with many

conventional pain relievers.

Boswellia should not be taken for more than eight

to 12 weeks, unless under the supervision of a

b*(3+7#6&:#(3):&5$(8)+)+.,#$M5

Folic acid People with chronic ulcerative colitis are at greater

risk of colon cancer. A study found that dietary

J.3+8&08+6&%*553#1#,)()+.,&%+-,+78(,)3"&%*55$#%%#6&

ulcerative colitis-associated colon cancer.5

Chinese medicinal herbs

Different Chinese medicinal herbs are used

according to the nature and severity of the

+,!(11().$"&2./#3&6+%#(%#M&A:#%#&:#$2%&+,83*6#d&

$:+Z.1(&Z#6.($+(4&8(*3+%&72$(*$#(#4&8.$)#Q&1.*)(,&

radicis (moutan bark), semen presicae (peach

seed), radix notoginseng, radix achyranthis

bidentatae, rhizoma atractylodis, cortex cinnamomi

(cinnamon bark), poria, radix ledebouriellae, radix

aucklandiae, radix paeoniae rubra (red peony),

rhizoma atractylodis macrocephalae (Fan 1999).6

Taking a single herb or supplement can be helpful.

Taking a combination of herbs can increase the

effect exponentially. In fact, the most effective

/("&).&*%#&:#$2(3&1#6+8+,#&+%&).&)(F#&(&%5#8+78&

combination or mixture. This can be in liquid,

powder, granule, pill or raw – cook-it-yourself - form.

Pill form is the most popular way to take herbs

2#8(*%#&):#"&($#&#(%"&).&)(F#&(,6&6.,;)&)(%)#&

unpleasant.

Over centuries (or thousands of years in Chinese

1#6+8+,#;%&8(%#N4&:#$2(3+%)%&:(@#&/.$F#6&.*)&

how to best combine groups of herbs to maximise

effectiveness and minimise (or eradicate) side

effects. Just like people, some herbs will work well

).-#):#$4&%.1#&/.,;)M&&C.1#&:#$2%4&/:#,&1+Q#6&

together will work much better than when used

separately. This use of synergy, and individualisation

to your particular case, is where herbal medicine

becomes very effective. Herbal medicine is an

exact science, so dosage and ratios are crucial.

One herbal remedy or supplement will not work

'.$&(33&8(%#%&.'&9$.:,;%&6+%#(%#&.$&*38#$()+@#&

colitis. Having a Chinese medicine practitioner or

,()*$.5():&)(+3.$&(&5$#%8$+5)+.,&%5#8+78(33"&'.$&".*&

will give you the best results.

Herbal medicine can be used to boost the immune

system, improve general wellbeing, and decrease

+,!(11()+.,&+,&):#&2./#3M&&C##+,-&(&b*(3+7#6&

herbalist who has the skills and experience to help

you can be life changing. Treatment is relatively low

cost, and in some cases, after an initial consultation

and prescription, herbal pills can be posted to you,

with only a brief follow-up consultation needed to

assess your response and review the prescription.

The best practitioner will give you herbal medicine

that works, that can be easy and convenient to

take.

Dr Elaine Hickman, B.H.Sc. TCM (Acupuncture), Cert.

Cl.Ac (Beijing), works at Fusion Chinese Medicine.

All references are available upon request.


Wellbeing

Q; NOW 38, I have been diagnosed with "#6)11)*/+7&8/',4&$"-,)-,&9/+&-/1,&*"1,&#/':&;&()<,&()$&)&<,+7&$"95=>4*&7,)+&)-&17&(>-8)#$&)#$&I are desperate to have another baby but I have had three miscarriages this year. My doctor wants me take stronger medications to control my disease

but I am reluctant as I am still trying to fall pregnant.

YOUR anxiety and concerns about starting stronger

medications is understandable but it is imperative

that you have a consultation with your specialist to

(33./&:+1&.$&:#$&).&#Q53(+,&):#&$+%F%&(,6&2#,#7)%M

It is well know that active disease during pregnancy

%+-,+78(,)3"&+,8$#(%#%&):#&$+%F&.'&5$#1()*$+)"M&J.$&):+%&

reason your doctor will recommend that the optimal

time for you to fall pregnant is when your body is

in remission. This will give you the best chance of

both falling pregnant and successfully carrying the

pregnancy.

Unfortunately, there are few clinical studies

providing evidence on the safety of many of our

drugs used in the management of IBD. For this

reason, doctors often rely on historical evidence

and experience to support the use of most of our

drugs.

Below I have attempted to list such

recommendations:

]0C0;%&P#M-M&%*35:(%(3Z+,#&(,6&1#%(3(Z+,#N

g&A:.*-:)&).&2#&%('#&+,&5$#-,(,8"&(,6&,*$%+,-M

g&&C*35:(%(3Z+,#&1("&$#6*8#&%5#$1&8.*,)&+,&1#,4&

but this is reversible.

Corticosteroids (e.g. prednisolone)

g&&B(@#&2##,&/+6#3"&*%#6&+,&5$#-,(,8"&'.$&1(,"&

years with minimal safety concerns.

g&&_Q)#,6#6&*%#&5.%%+23"&+,8$#(%#%&):#&$+%F&.'&83#')&

pallet.

g&&?.#%&5(%%&+,).&2$#(%)&1+3F&%.&(,"&6#8+%+.,&(2.*)&

nursing should be based on how long and how

much prednisolone the mother has been taking.

Immunomodulating drugs (e.g. azathioprine

[imuran] purinethol [6MP])

g&&B(@#&,.)&2##,&8.,83*%+@#3"&3+,F#6&).&%5.,)(,#.*%&

abortions, congenital abnormalities, or childhood

neoplasia

g&&R#8#,)&$#%#($8:&%*--#%)%&1+,+1(3&#Q5.%*$#&

through breast milk. At peak milk levels, the infant

would receive <1% of the maternal dose.

0,)+&AIJ&P+,!+Q+1(2&(,6&(6(3+1*1(2N

g&&=,'.$1()+.,&(2.*)&(,)+H)*1.*$H,#8$.%+%H'(8).$&

(TNF)-

antibodies in pregnancy is being collected

in several large databases in America.

g&&A:#%#&6()(&+,6+8()#&(,)+HAIJ&(,)+2.6+#%&($#&

probably safe in pregnancy.

g&&=,'(,)%&#Q5.%#6&).&(,)+H&AIJH

agents in utero

demonstrate an adequate response to early

childhood vaccine studies.

g&&=,!+Q+1(2&6.#%&,.)&(55#($&).&5(%%&+,).&2$#(%)&1+3F

g&&J#/&6()(&($#&(@(+3(23#&+,&):#&GA=C&$#-+%)$"&/+):&

adalimumab (ADA) (n=30) during pregnancy

or breastfeeding, but no safety risks have been

+6#,)+7#6M

=,&):#&aC4&):#&9$.:,;%&W&9.3+)+%&J.*,6()+.,&.'&01#$+8(&

(CCFA) prospective pregnancy outcome study has

enrolled 404 women to date in an effort to better

understand birth outcomes in IBD patients who are

taking a variety of medications. Encouragingly,

the study has found no increase in the risk of

spontaneous abortion, preterm birth, low birth

weight, intrauterine growth retardation, Caesarean

section, or stay in neonatal intensive care.

An Independent market research company called Jigsaw Research is looking to talk to people in Sydney and Melbourne with moderate to severe Crohn’s Disease to find out a little more about what it is like living with Crohn’s.

They would pay you $200 to come to your house or office and talk to you for around 1.5 hours.Alternatively if you live in Sydney you can go to their offices in The Rocks.

They are specifically looking for people who:* are either taking:- A Biologic such as Humira (Adalimumab) or Remicade

(Infliximab) or

- A Thiopurine such as Imuran (Azathioprine) or Azahexal or Azamum

Before conducting the research they would talk to you on the phone in more detail to explain the legitimacy of this project and discuss more about your specific stage of Crohn’s.They are doing this research for Abbott (Pharmaceutical company).The main aim of this research is to find out how you manage your Crohn’s disease and what you think of the different options available for treatment and support and how you think these could be improved.

If you would like to take part in this research please phone Kate at Jigsaw Research on 02 8373 1034.

PAID MARKET RESEARCH FOR PEOPLE WITH CROHN’S DISEASE

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Inside Insight | Page 23

OFFICE ADDRESS

Level 1, 462 Burwood Rd

Hawthorn, Vic 3122

TEL: 1800 138 029

61 3 9815 1266

FAX: 61 3 9815 1299

EMAIL: [email protected]

WEBSITE: www.crohnsandcolitis.com.au

QUEENSLAND OFFICE:

TEL: 1800 071 072

EMAIL: [email protected]

POSTAL ADDRESS (ALL CORRESPONDENCE):

CCA

PO Box 2160, Hawthorn VIC 3122

OFFICE HOURS

The phones are attended between 9.30 and 5.00 pm Monday

to Friday (EST). If phoning outside these hours please leave a

message on the answering machine and your call will be

returned as soon as possible.

APPOINTMENTS

If you wish to attend the CCA of ce please ensure that you

have made an appointment in advance. This is to ensure that

the person you want to speak with or the materials you have

requested are available.

To avoid inconvenience, an appointment can be made

by contacting (03) 9815 1266.

THE GLOBAL NETWORK OF IBD ORGANISATIONS

Crohn’s & Colitis Foundation of America (CCFA)

www.ccfa.org

Crohn’s & Colitis Foundation of Canada (CCFC)

www.ccfc.ca

European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA)

www.efcca.org

National Association for Colitis & Crohn’s disease (NACC) UK

www.nacc.org.uk

CCA was established in 1985 by

people who have IBD or have

a family member affected by

the illness. It is a not-for-pro t

organisation with an honorary

board of Directors committed

to nding a cure for IBD and

providing and implementing

services to assist members’

needs. CCA collaborates with

the Gastroenterological Society

of Australia, Digestive Diseases

Foundation, IBD Australia special

interest group and other medical,

surgical societies or accredited

professional organisations to

produce speci c IBD publications.

These publications are distributed

nationally and internationally to

patients and medical professionals,

and to the global network of IBD

patient organisations.

CCA NATIONAL MAGAZINE SPONSORSHIP

We also acknowledge and

appreciate the support of

Orphan towards sponsorship

of the CCA magazine.

DISCLAIMER

CCA does not accept responsibility for the accuracy of statements, errors or omissions made by its’ contributors. The products,

ideas, websites, books and clinical trials mentioned in the magazine are not a warranty, endorsement, approval of these products

and ideas, or of their safety.

CCA disclaims responsibility for any injury to persons resulting from any of the ideas or products referred to within the magazine.

Inside Insight cannot be reprinted, copied or distributed unless permission is obtained from CCA. No pro t can be made from the

magazine. No information taken from the magazine can be placed on any website without prior permission from CCA.

www.crohnsandcolitis.com.au Inside Insight Page 23 www.crohnsandcolitis.com.au Inside Insight Page 23

OFFICE ADDRESS:

Level 1, 462 Burwood Rd

Hawthorn, Vic 3122

TEL 03 9815 1266 FAX 03 9815 1299

EMAIL [email protected]

WEBSITE www.crohnsandcolitis.com.au

Documents

145774 Crohns Magazine Text · 2014-06-23 · Sydney, and Box Hill Hospital, Melbourne. The forums were well attended, ... A dietitian spoke on dietary requirements, while CCA Qld