Dear Patients, Families and Supporters
It gives us pleasure to advise you the Autumn/Winter edition of our 2015 'Moving On' newsletter is now published. Here’s hoping that this finds you well, since our health is so critical to being able to live to the full!
Please click here to view this latest edition of our newsletter:
UNITED WE STAND IN OUR FIGHT AGAINST IBD
CCNZ takes part in global campaign for World Inflammatory Bowel Disease (IBD) Day
This World IBD day on May 19th, CCNZ is joining patient organisations in over 40 countries through EFCCA to help raise awareness of the 20,000 people in New Zealand with Crohn’s and ulcerative colitis.
We want to help share the incredible stories of patients and their support networks to empower people who live with the disease and show that it’s not something that will slow you down.
Join us by making a small video recording of yourself to add to the world video we’re creating. If you’re someone who lives with IBD, tell us about what you’ve done in your life despite having the condition. If you’re a family member or carer of someone with IBD, tell us how they have inspired you.
“I’m Marjorie from Auckland in New Zealand. My best friend has IBD but it hasn’t kept us from travelling together. United we stand in our fight against IBD.”
“I’m Lucy from Geelong, Australia – I just had a trip to Thailand and although I had to watch the food I ate I still had a great time. I wasn’t embarrassed to tell my friends about my IBD so they understood when I couldn’t always eat and do the same things they did. United we stand in our fight against IBD.”
How to get involved
Make a small video recording of yourself and send it to email@example.com. We’ll upload the video to social media under the hashtag #UnitedWeStand2015. Your video should be no longer than 15-30 seconds. It should include your first name, your city and country, two sentences about your life and IBD, and end with the message “united we stand in our fight against IBD”.
Your video will be added to our World IBD playlist, which will be made public on 19 May 2015. The playlist can be viewed on YouTube and the World IBD Day website (www.worldibdday.org)
You can record your video by using your mobile phone, camera, computer etc. Send it to firstname.lastname@example.org and we will upload it to social media. Once you have uploaded your video please make sure to add the keyword #UnitedWeStand2015 to your video’s title so that we can find your video and add it to the playlist.
Show the world how you’re joining the fight against IBD!
We need your help!...
CCNZ is seeking volunteers for our camp for children and teens with IBD, camp Purple Live. If you are interested in making a difference in the life of a young person, please contact either Charlotte at 0800 ASK IBD or email@example.com or Dr Richard Stein at Richard.Stein@huttvalleydhb.org.nz
Camp Purple Live...
A Guide for Patients with Ulcerative Colitis
This guide enables patients with ulcerative colitis to record the details of your health on the same points-system as your medical team is likely to use and is called “How to complete your own Simple Clinical Colitis Activity Index
The idea is that, before appointments, you can fill it in with the details about your symptoms that the medical team are likely to ask about. Or, if you think that your colitis is flaring up, you could fill it in at home to verify this and then, if you need to seek medical help, you have got the information that the medical team will need to be able to take care of you. Our thanks go to Dr Russell Walmsley of North Shore Hospital for his work on this.
Free Resource for women with IBD
From Surviving to Thriving - Top 5 health tips for women with IBD
Lana Vernon is a health coach and IBD patient on a mission to inspire women with Inflammatory Bowel Disease, not just to survive, but to thrive! She's all about empowering you to take back control - helping you to rebuild your health and regain your life.
The e-book, titled 'From surviving to thriving', can be downloaded for free here.
Management of Inflammatory Bowel Disease
In Children and Adolescents in New Zealand
This document aims to provide an evidence-based guide to the diagnosis and management of Inflammatory Bowel Disease (IBD) in children and adolescents across New Zealand. The recommendations within this document provide a guide and may not encompass every clinical situation.The guideline is formulated within the framework of the Paediatric Gastroenterology Clinical Network.
Patient Journey Research: Results
What is it like to live with Inflammatory Bowel Disease in New Zealand?
Atlantis Healthcare were asked by Janssen-Cilag (a pharmaceutical company) to talk to people living with IBD about their experiences.
Atlantis Healthcare talked to people living with IBD and the people who care for them – carers; gastroenterologists; nurses; a surgeon; a dietitian; and people from Crohn’s and Colitis New Zealand and the Ostomy Society
From this we tried to capture what it’s like to live with IBD from a medical; physical; psychological and social perspective. This is called a Patient Journey
Dear Patients, Families and Supporters
It gives me pleasure to share with you our Autumn 2014 newsletter. Here's hoping that this finds you well, since our health is so critical to being able to live to the full!
This newsletter aims to keep you informed about things that might help make life more liveable for people connected with inflammatory bowel disease, and to reduce the isolation that some patients can feel.
So this issue of our newsletter is packed with information and tips which might help your health, or give you more options to discuss with your doctor or things to look forward to. This includes our new 0800 number – 0800ASKIBD – see page 6.
Also, we are very proud to announce the holding of our first New Zealand camp for young people with inflammatory bowel disease next summer. Details are on the first couple of pages. Basically, the aim of the camp is to help young people to connect with others of their own age who have IBD, and to build confidence, independence, self-esteem, resilience and empowerment. We are really keen to hear from people who would like to come or help. The main funding is secure, thanks to the Ports of Auckland Fun Run last month, but we still need extra to make the camp a real success. So if you could donate, in cash or in kind, please do also contact us. Our email remains firstname.lastname@example.org , and a donation form is at the back of the newsletter.
Go well, Yours sincerely
Brian Poole, QSM
Chairman, Crohns & Colitis New Zealand
0800 ASK IBD
We are here to help!
CCNZ has just launched a new toll free (landline and mobile) 0800 Number for Crohn's & Colitis related enquiries. You can now call us from anywhere in NZ without the worry of how much the call is costing you.
We welcome you to leave us a message and we will get back to you as soon as possible (within 24 hours).
Call us on 0800 275 423.
Massey University - IBD Study
Massey University Researchers Hannah Morton (a nutrition PhD student) and Jane Coad (Associate Professor in Human Nutrition) are conducting a nationwide study of Inflammatory Bowel Disease (IBD). The aims of the study are to investigate the possible associations between environmental factors, foods, and vitamin D level in New Zealanders.
Recruitment for this study has now closed, thank you to those who have taken part. We look forward to reporting the results later this year.
The Corticosteroids research survey is now closed.
Thank you so much for your participation. We will publish the results once Professor Gearry has completed his research.
We are what we eat
Research recently completed at Auckland University by Professor Lynn Ferguson, Head of Nutrition at the School of Medical Sciences, suggests that says the rate of chronic disease in New Zealand could be slashed just by changing our diets.
Professor Ferguson recently spoke to the Wellington Support Group - watch her presentation here.
The oral health research survey is now closed
Thank you so much for your participation. We will publish the results once Professor Nolan has completed her research.
News from Europe - EFCCA's latest magazine
the first issue of EFCCA magazine 2014 is now available. We hope you enjoy reading about the latest activities, news from members and other interesting articles related to IBD, including latest developments in the treatment of IBD.
Is there a therapeutic role for faecal microbiota transplantation in ulcerative colitis?
By: American Journal of Gastroenterology
September 5, 2012
Faecal microbiota therapy (FMT) is the transplanting of faecal bacteria from a healthy individual into a recipient. It is an emerging treatment for several gastrointestinal disorders. There are case reports of FMT successfully treating ulcerative colitis, according to researchers from the University of Washington-Seattle. The researchers suggest that FMT as a treatment for UC holds therapeutic potential and deserves further investigation.