Monday 30 December 2013

Join our New Readers Panel

readers-panel-icon.jpg (Preview)Would you like to help Crohn's and Colitis UK by becoming a member of our Readers Panel?

We are looking for people with IBD to read and comment on draft versions of information sheets and booklets from a reader’s point of view.


We would particularly like to hear from you if you have a full or part-time job and/or if you have tried counselling services for IBD-related problems.

If you are interested please contact Glenys Davies at publications@crohnsandcolitis.org.uk.


Sunday 29 December 2013

Giveacar for Crohn's and Colitis UK



Giveacar (Preview)This is a long shot... but, if you know of anyone with a car that's going to go for scrap, it could be put to better use...



Give some festive cheer this year and donate an old car through Giveacar with the proceeds going to Crohn's and Colitis UK.
A scrap car donation raises a minimum of £90 which could help us to provide much-needed support through our helplines.
Simply call 0207 736 42 42 or visit the Giveacar website to arrange a free collection.
They take cars of any age or value!


Wednesday 25 December 2013

Merry Christmas One and All

Just a quick festive note to say thank you to all our readers and subscribers.

We've had a fantastic year in 2013, raising awareness of Inflammatory Bowel Disease amongst the general public - with a big media campaign launched in May by X Factor and Big Brother star Rylan Clark (whose mum has Crohn's) and Crohn's and Colitis UK media volunteer Amber Gamble on Sky Sunrise and 150 radio stations across the UK.

We have seen a sharp increase in visitors to the Me and IBD main website, which hopefully means we've been successful in encouraging the newly diagnosed IBDers (a staggering 10,000 young people a year) to seek support and information from Crohn's and Colitis UK.

We hope that you all have a wonderful Christmas, wherever you are in the world (we have a lot of overseas visitors). Bring good cheer to you and yours.






Friday 20 December 2013

Red Hot Raffle winners announced!

carrie-raffle-2.png (Preview)Taking place on Thursday 12 December, the raffle managed to raised almost £61,000 to fund research into Crohn’s and Colitis.

The ticket which won our top prize was sold by Georgina Vrakettas-Knight who went all-out to support the raffle, selling an incredible 551 tickets.

We were delighted to welcome our Ambassador and TV personality Carrie Grant to draw this year's Red Hot for Research raffle.

Every ticket had an equal chance of winning, however some of our winners bought only a few tickets. We are grateful to everyone who bought or sold tickets.

The prize winners were:

Wednesday 18 December 2013

Twins required for IBD research

Twins where one or both suffer from Crohn’s Disease or Ulcerative Colitis are needed for the IBD Nixon Twin and Multiplex UK Registry, a research database.ibd-nixon-twin.png (Preview)

They are also interested to hear from "Multiplex" families where 3 or more members have been diagnosed with IBD.


The goal is to learn more about IBD to help develop new strategies for prevention, early diagnosis and management - Crohn’s and Colitis UK is supporting the work.

More information:

Joining the registry involves filling in a questionnaire about your health and allowing the research team to access your medical records.
This will also be featured in the next issue of NEWS.

Tuesday 17 December 2013

Christmas Single Released, Profits for Crohn's and Colitis UK

The amazingly talented Emily Cotton has released an enchanting version of Silent Night called 'Sleep in
Peace'. A great addition to any Christmas song playlist and a snip at just 79p through iTunes.

This is a fantastic way to raise money and support an up and coming artist.

You can read more about Emily Cotton on her Facebook fan page HERE.

A massive thanks to Emily for releasing this to raise funds and awareness for Inflammatory Bowel Disease.

LINK TO ITUNES


Monday 16 December 2013

New survey: Personal Independence Payment application experience

Crohn’s and Colitis UK is a member of the Disability Benefits Consortium, more than 50 charities calling for a fairer benefits system.
ibd-disability.jpg (Preview)
The consortium has just launched a new survey on the experiences of people applying for Personal Independence Payment (PIP) to help inform future campaigning work.

The survey has seven parts and should take about 20 minutes to complete.

In order for us to understand your experience of the whole process of applying for PIP, this survey is best completed once you have gone through your application for PIP and know the outcome.
Your views are incredibly important and will help us to tell the government about any problems or issues with the process that need to change.

Saturday 14 December 2013

Office staff wear Christmas jumpers and raise funds for Save the Children

xmas-jumper-day-icon.png (Preview)Following the success of our ‘Wear it Pink’ day in October, staff at Crohn’s and Colitis UK decided to get involved in Save the Children’s ‘Christmas Jumper Day’.


The festive jumpers have helped everyone get into the Christmas spirit, along with lunchtime Christmas carols, mulled wine (non-alcoholic of course), Christmas cupcakes and ginger cake.

While we’ve been having fun, we have also been able to support a charity who save children’s lives in some of the toughest parts of the world – from Syria to Liberia, Haiti to Bangladesh.
With huge thanks to everyone who took part and made Friday the 13th a day worth getting out of bed for.
xmas jumper-day


Wednesday 11 December 2013

New publication: Tests and Investigations for IBD

A new information sheet: Tests and Investigations for IBD (Edition 4) is now available to download from our website.
test-and-investigations-for-ibd.png (Preview)
This replaces the booklet Investigations for IBD - Edition 3, which is now out of date and being discontinued.

More information

infosheets icon (Preview)Printed copies are available from the office - contact usif you would like one.
Visit our Information about IBD section to view all of our information sheets, guides and booklets.



Tuesday 10 December 2013

Personal Voices

Personal voicesEvery patient's experience of Crohn's and Colitis is different. Our website and booklet tells the story of just some of the UK's 240,000 children, teenagers and adults who have the conditions.
Read about their personal experiences below or download our Personal voices booklet (PDF).
Catherine's story
Catherine's story
Derek’s mum Catherine was diagnosed with Crohn’s at the age of 16 and, although she defied medical advice to have two children, she was almost always frail.
Chris's story
Chris's story
Chris was diagnosed with Crohn’s in 1983. Since then he has undergone surgery eight times and had numerous other stays in hospital.
Jennifer's story
Jennifer's story
It took 18 months of pain, sickness, bleeding, exhaustion and dramatic weight loss for 22 year-old Jennifer to be diagnosed with Crohn’s despite three visits to Accident and Emergency and even more visits to her GP.
Philip's story
Philip's story
Philip was a happy little soul from the moment he was born, and being diagnosed with Colitis at the age of 16 did nothing to change this.
Rob's story
Rob's story
There were two reasons why Rob’s experience of Crohn’s came as a shock to him.
Robyn's story
Robyn's story
Robyn was only 8 years old when she was diagnosed with Colitis, becoming the third generation in her family to have the condition.
Ruth's story
Ruth's story
As a working wife and mum of two, Ruth battled through periods of sickness and stomach pain for several years before being diagnosed with Crohn’s.
Sarah's story
Sarah's story
“I felt very alone,” Sarah says, remembering her first two years of illness. “No one understood what I was going through.”
Sonya's story
Sonya's story
Diagnosed with both Crohn’s and Colitis, Sonya’s experience has included multiple surgeries, more than 90 general anaesthetics, 37 blood transfusions, long periods of up to a year when her only food has come intravenously.

Wednesday 4 December 2013

Do you find living with IBD exhausting? Would you like to share your story?

Crohn’s and Colitis UK is putting out a call for lots of member and supporter (recent) short stories (all ages) about how the symptom of fatigue/extreme tiredness has had a negative impact upon an individual’s ability to enjoy a normal social life, undertake study or stay in employment .

We will be looking to place some of these stories into regional press all around the UK during the Spring 2014, to raise awareness of Fatigue. These may also take the form of interviews.

70% of young people in 2007 when surveyed by the charity stated Fatigue” as their most noticeable symptom. As a result we won £500,000 from the Big Lottery Fund to investigate Fatigue further. This year, our Me and IBD survey of over 1,000 young people aged 16 – 29 indicated an even higher level of concern – even when not having a flare - 76% found it more of a problem than extreme pain or diarrhoea.

Our Fatigue project findings are due to be released in May/June 2014.

*This is for any age, so feel free to share with others.*

Please download the Fatigue Media Volunteer form and email  it back to us.