Retrospective of Crohn’s Colitis Ireland in its 40th anniversary year 2024

This retrospective is followed by a transcript of the minutes of the first board meeting of the ISCC in 1984 written by current board member Ciaran Davis.

The first meeting of Crohn’s and Colitis Ireland (then The Irish Society for Colitis and Crohn’s Disease or ISCC) was held on Monday 22 October 1984 in the Health Care Centre, St James’s Hospital, Dublin. For a very short period of time the society was called “The Irish Society for Colitis and Chron’s Disease”, as it was common at the time for ‘Crohn’s’ to be mis-spelt as ‘Chron’s’ or ‘Crones’, with no internet or Wikipedia to check!

The healthcare landscape was quite different back then. Health services were delivered by health boards, the predecessors of the HSE. In Dublin, where the ISCC was initially concentrated, there  were many more smaller hospitals, most of which have since closed and  amalgamated into the six larger general hospitals we have today. The estimate for the number of people living with Crohn’s disease and ulcerative colitis in 1984 was 5,000 nationally.

Of note from the minutes of the first meetings, the word ‘sufferer’ was heavily used to describe those living with Crohn’s or ulcerative colitis. It was agreed to establish the ISCC as a membership-based organisation, with the initial annual membership subscription set at £5 (€6.35). The first source of funds was a generous donation of £200 (€253.95) from Professor Donald Weir and Dr Nap Keeling, both of St James’s Hospital.

At the first meeting (taken directly from the minutes of the first meeting), the aims of the society would be:

Assistance was sought from the National Association for Colitis and Crohn’s Disease (now Crohn’s & Colitis UK), who kindly gave permission to borrow wording from their constitution as the basis for the first constitution of the ISCC.

After the first committee meeting, notices were placed in the press for the first public meeting of the ISCC which was held on Monday 3rd December 1984, also in St James’s Hospital. The society was primarily focused on Dublin, with the expressed desire to achieve a nationwide reach. At this meeting, patients volunteered to act as representatives of each of the Dublin hospitals: Jervis Street Hospital, Richmond Hospital (which amalgamated into Beaumont Hospital in 1987), Adelaide Hospital, Meath Hospital, National Children’s Hospital Harcourt Street (replaced by Tallaght University Hospital which opened in 1998), Sir Patrick Dun’s Hospital (which closed in 1986 and transferred its services to St James’s Hospital), The Mater Hospital, and St Vincent’s Hospital.

The cost of drugs was discussed at length at this first public meeting, as was the fact that Crohn’s and colitis were not recognised as a chronic condition by the health boards or the Department of Health and Social Welfare (which were one department back then). These issues remain the same in 2024!

The first patient survey was circulated, in which people who were living with IBD were invited to provide details of the issues that they faced, such as medical expenses, and other issues in relation to career and education. It was well understood that there was a need for support services that did not fall under what was provided medically under the normal doctor/patient relationship. Little was known about allowances that may have been available for medical expenses. Concern was expressed for career opportunities for anyone who disclosed their diagnosis to an employer.

In the pre-internet, pre-social media world, it was decided to hold a series of public meetings, where invited medical professionals would deliver lectures on various aspects of Crohn’s and colitis. The Health Boards were to be contacted to produce information leaflets.

By the time of the third meeting, held on 21st January 1985, the society was firmly up and running. It was decided to incorporate as a ‘company limited by guarantee’, which is the same status of the CCI today. A press conference was to be arranged to publicise the society and IBD in general, about which very little was known at the time. Most people would not have even heard of Crohn’s disease or ulcerative colitis, much less known of anyone who was living with Crohn’s or colitis. The society contacted the ‘Gay Byrne Hour’ radio show and ‘Bodywise’ TV show to request an interview or news item.

The Society continued to hold meetings of the committee monthly. St James’s Hospital and Trinity College agreed to allow the use of the Medical School in the hospital for meetings of the Society for which the committee was extremely grateful.

 Over the first ten years of its existence, the ISCC, which remained a wholly volunteer-led organisation, supported research projects, held numerous public information lectures in Dublin and various centres including Cork, Galway, Limerick, Kilkenny and Drogheda. To give the society a permanent home, it moved to a desk in a shared office space in the Carmichael Centre, where it still its home today.  

It produced literature supported by the Health Promotion Unit, Department of Health, which was distributed to all members and families plus hospitals, social services offices and the health boards. A helpline, run entirely by volunteers, was set up, available one day a week, on Wednesday mornings. The tenth anniversary of the ISCC was celebrated at its annual open day on Saturday 16th April 1994 in the Mansion House, Dublin.

The society continued to hold its annual open day in April of each year in Dublin, kindly supported by consultant gastroenterologists and their teams, plus other healthcare professionals such as IBD nurses, dietitians, and surgeons. Professor Colm O’Moráin kindly offered to act as the medical patron of the society, and remained for many years in this unpaid post which offered no fringe benefits at all… for which the CCI will be forever grateful.

In addition to the annual open day in Dublin, the ISCC held hugely popular public support meetings in Cork around November each year, which were organised and supported by Professor Fergus Shanahan for many years. The ISCC also held two or three other public meetings each year, rotating between different centres, such as Wexford, Waterford, Kilkenny, Clonmel, Tullamore, Limerick, Galway, Mullingar, Castlebar, Cavan, Drogheda, Naas, and Letterkenny. There was also a joint ISCC/NACC Northern Ireland meeting in the Daisy Hill Hospital in Newry. The ISCC was represented at meetings of the Irish Society of Gastroenterology.

The ISCC remained as a ‘desk’ in a shared office for many years, and the helpline expanded to three mornings per week.  The first member database was transferred from hardback ledgers to Microsoft Access in 2001, followed shortly afterwards by the first website

Many pharma companies supported the production of an ever-expanding range of information material for members and their families. The ISCC produced a ‘No Waiting’ card which was disseminated to members and anyone who requested one.

In 2011, the board of the ISCC agreed that there was a need to expand and seek opportunities to reach more people as the numbers being diagnosed with Crohn’s and colitis was unfortunately increasing year on year. The ISCC moved to its first dedicated office in the Carmichael Centre, to cater for an increase in activity, to facilitate the work of volunteers, and to prepare for its plans to recruit its first employees, which was seen as essential in continuing the work of the ISCC into the future.  

In 2013 the website was enhanced and memberships went online for the first time. Membership cards, incorporating the ‘No Waiting’ card, were issued to members. With a donation of user licences, the member database was moved to Salesforce. However, the human touch was still seen as the most important element in the provision of support. The open days and public meetings, which had served the society so well for many years, were as essential as ever. The board looked at ways to improve the experience for members by moving the meetings to new and more comfortable locations, providing catering and refreshments, and incorporating more variety into the presentations, including opportunities for members and their families to meet and network with others. The continued support of our friends in the healthcare profession – gastroenterologists, nurses, dietitians, psychologists, surgeons, physiotherapists – was essential in the provision of these meetings, which we sought to improve by seeking feedback from members.   

In 2017, the ISCC launched a campaign called the #Doubleup campaign to double the number of specialist Inflammatory Bowel Disease (IBD) nurses. An ISCC delegation met with Health Minister at the time, Simon Harris in November of 2017 and presented him with a petition containing over 3,600 signatures, supporting the campaign. The meeting was very positive which resulted in the recruitment of 14 additional IBD nurses across the country to support patients nationwide.

In 2018, the ISCC rolled out six self management programmes called Living Well with IBD, which was the ISCC’s offering of the well-established Stanford University Chronic Disease Self-Management Programme. This has since been rolled out nationally by the HSE, so the decision was taken to support that roll out which would enable the ISCC to offer the programme to many more members.

In 2020, ISCC released called Gutcast. Gutcast, is the first podcast for people living with inflammatory bowel disease (IBD) in Ireland, developed by the CCI and Janssen Sciences Ireland UC which now has five series and over 25,000 listens. The award winning podcast features a range of guests including healthcare experts and people living with IBD, providing insights and advice on a range of topics.

The ISCC was rebranded to Crohn’s and Colitis Ireland (CCI) in 2022, which was accompanied by a relaunch of the website, now

In 2023, CCI developed a campaigned called “Poo Taboo – lifting the lid on Crohn’s and Colitis”.  The campaign aimed to lift the lid on some of the stigma around IBD symptoms and the importance of people not being embarrassed to get checked out. The campaign featured a symptom checker where in just 30 seconds the respondent would know what to do, including whether to contact their GP and what symptoms to highlight during the appointment. To date this checker has had over 13,000 responses and was mentioned in over 100 various media outlets.

As part of Crohn’s and Colitis Awareness week in 2023, Crohn’s and Colitis Ireland launch a new 120-page colouring and information journal for children and teens living with Inflammatory Bowel Disease called “Me and IBD”.  As part of the launch, Crohn’s and Colitis Ireland donated 100 complimentary copies of the journal to CHI at Crumlin Hospital along with colouring pencils to give to newly diagnosed children in hospital.  

Of particular note, is that the support of countless healthcare professionals over the past 40 years, the number of which runs well into the hundreds, was essential in firstly establishing the ISCC, but also in keeping the ISCC going, and helping to make it what it is today. They have not only been our doctors, nurses, dietitians, surgeons, psychologists, but have also become our friends. We are fortunate to have world class clinicians to look after our health in Ireland. We are eternally indebted to you all, and words cannot express our gratitude to you for everything… EVERYTHING… you do for us.

To those who started the ISCC in 1984, we owe you a great debt.  Thank you to the late Sarah Meade, Sr Ann Dison, Bruce Walker, Bill Mulrooney, Latitica Moonely, Marie Judge, Colette Murphy and past early committee members (1994): Betty Lattimore, Liz Comerford, Kevin Devlin, Rhona O’Brien, Breda Ryder, Peadar Walsh, P J Hogan, Carol Shanahan, Charles Irvine, Helen Flanagan, Hilary Dunne, Teresa Dowling. Unfortunately our archives are incomplete as to the full list of committee members over the years, however if you contributed to the mission of either the ISCC or CCI over the past 40 years we thank you for your dedication to providing much needed support for people living with IBD in Ireland.

Finally, CCI was established as the ISCC forty years ago for one main reason – to support the needs of people who are living with or impacted by IBD in Ireland. Not everyone who is living with IBD is a member of CCI, however we work towards improving the lives of everyone who is living with IBD in Ireland. To our members and others who have supported us, we do this for you, it is all about you. Without your support, we would not have been around for the past 40 years, and countless numbers of people would not have benefited from support. It is all about lessening the impact of living with IBD, enabling you to get on with your education, your career, or whatever it is you want to achieve, and to ultimately improve your quality of life, and enjoy life! This is why we’re here and our plans for the next few years promise to deliver even more on that aim. Thank you for being with us for the past 40 years, and let’s stick together for the next 40!

Ciarán Davis, CCI Board Member since 2007, 29th April 2024

Minutes of Irish Society for Colitis and Chron’s Disease

Health Care Centre, St James Hospital

4.00pm Monday 22 October 1984

The meeting was called by interested parties (i.e. disease sufferers, relatives and medical representatives) to establish an Irish Society to act in the specific interests of sufferers of Ulcerative Colitis and Chron’s Disease.

It was agreed to name the society “The Irish Society for Colitis and Chron’s Disease.”

Officers were elected on a temporary basis (probably 3 to 6 months) pending the establishment of the Society with full constitution and rules.

Chairman:                                      Dr Dermot Kelleher

Secretary:                                       Bruce Walker

Treasurer:                                       Sr Ann Dixon

Public Relations Officer:      Margaret Kennedy

It was decided that Mr Walker would investigate the most appropriate method of registering the Society. Mr J Travers, who attended in an advisory capacity, suggested that a number of options were available.

The initial subscription to the Society was set at £5 per person.

A donation of £200 was offered jointly by Professor Weir and Dr Keeling on behalf of the hospital was received with thanks.

It was decided to open a bank account in the name of the Society. It was also agreed that for an initial period at least cheque signatures should be within the ambit of St James Hospital.

It was decided to investigate establishing a post office box number for the forwarding of relevant Society mail to the Secretary.

A general discussion took place on both the general and specific aims of the Society.

It was agreed, but not exclusively, that the general aims of the Society would be as follows:

To raise funds in furtherance of its other aims. Such funds should primarily be sought from the sponsorship of the major drug companies associated with the treatment of both diseases. Funds would also be sought by membership fees, etc.

It was agreed to seek assistance (material and otherwise) from the UK National Association of Colitis and Chron’s Disease.

Medical staff stressed the Society should ideally be a broadly based lay organisation in order to achieve best results. Heavy reliance on the staff of a single hospital would be counter productive.

A full public meeting was set for Monday 3 December at 7.30pm, venue to be arranged. Notices should be placed in the press. A progress meeting would be held on Monday 26 November at 7.30pm at St James Hospital.