Crohn's and colitis manifesto launched

[Posted: Tue 12/05/2009 by Joanne McCarthy www.irishhealth.com]

A new patient manifesto created by young people living with inflammatory bowel disease (IBD) has been launched. Young people with IBD are calling for greater public awareness of their condition, which will lead to earlier recognition of symptoms, earlier diagnosis and better disease management.

Developed by young people aged 18 to 30 with Crohn’s disease and ulcerative colitis (both forms of IBD), the manifesto identifies critical challenges for this group and calls for the Government, employers, healthcare professionals and the general public to take action.

The manifesto calls for IBD to be designated as a long-term illness, reflecting the fact that both Crohn’s disease and ulcerative colitis are life-long conditions, to help relieve the financial burden on patients.

It has asked for improved access to continuity of care and multi-disciplinary medical teams to assist people with IBD to better manage all aspects of their condition. Improved public access to toilet facilities has also been advocated for. When people with IBD are in the midst of a flare-up, they need access to toilets in a hurry.

The manifesto also stressed the need for a youth advocacy group so that young people with IBD can have their voices heard, talk to other people about their condition and campaign for policies that need to be changed.

Crohn’s disease and ulcerative colitis are both chronic auto-immune illnesses that affect an estimated 15,000 people in Ireland, and for which there is no known cause or cure. It is usually diagnosed between the ages of 15 and 40, but can occur at any age. The conditions have similar symptoms, including abdominal pain, diarrhoea, fever, loss of appetite and weight loss. Left uncontrolled, symptoms may ‘flare up’, causing severe abdominal pain and frequent visits to the bathroom. When parts of the colon may become too inflamed, patients may need surgery and a life-long colostomy bag.

The participants who created the manifesto all agreed that their condition limited their personal choices, resulting in many dropping out of third level education, working part time rather than full time, opting for low stress lifestyles and less pressurised careers. Some are also fearful of starting a relationship or a family. However, the manifesto highlights that once symptoms are under control, people with IBD may be able to live a full life again.

“Inflammatory bowel disease can be devastating for young people. The symptoms make it difficult for people to discuss the disease, and this can often delay diagnosis and treatment,” said Prof Colm O’Morain, consultant gastroenterologist in Tallaght Hospital, Dublin.

“Advances in treatment and ability to diagnose can help young people to better live a normal life. I believe this manifesto will inspire many people to take control of their condition and pursue their dreams,” he said.

Visit our Crohn's and Colitis Clinic, which includes an exclusive online video Q&A on all aspects of Crohn's disease with Prof O'Morain.

For a copy of the patient manifesto, log onto www.iscc.ie or www.crohnscolitis.ie.

kk  Posted: 14/05/2009 23:39

Why the age limit of 40. My friend was 50 when she was told by a very eminent surgeon that she had piles and eventually after several visits to GP/OPD was admitted and colonoscopy performed and UC diagnosed. Treated with small amount of Steroids and sent home still bleeding etc. Had to be readmitted and changed Dr and got high dose steroids, got very ill from steroids, horrific cough,  hair loss. Eventually cut back steroids and became well again. TG. Then a flare up and 3 visits to OPD but told the bleeding was piles not UC. Eventually had to go to Casualty(only access to Hosp) and was diagnosed with Chrohns. Does anyone know if there is a good Dr that cares about people with this disease and keeps up to date with new therapies etc. and that someone on a medical card can get access to. Is there even a good website.

em294  Posted: 24/05/2009 23:49

nearly 8 years with uc. vincents hops are saints.the uk websites were a great help to me answered lots of Qs i had. look under young ia. will find out the actual site and post it later. keep an eye on the stress levels anything can set it off.

sinead  Posted: 07/08/2009 16:38

The gastroenterology unit at St Vincents in Dublin is great, any doctors and nurses i have had contact with have been very helpful. tried different medications etc.

informed  Posted: 10/08/2009 01:42

There are many young children under the age of fifteen diagnosed with crohn's disease / ulcerative colitis in Ireland every year, though the Department for Health prefer not to talk about it. Irish Colitis & Crohn's Support Helpline: 016282618

nettyhop  Posted: 18/04/2011 16:37

I am currently doing a dissertation on IBD as part of my Home Economics Teaching degree and would really appreciate if some comments were added to my own blog? It also offers information on IBD...So check it out www.inflammatoryboweldisease.blogspot.com and follow it as well :)

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