“Speaking out Changes Lives”
The Czech ILCO is an umbrella organisation representing all regional ILCO clubs within the Czech Republic. Since 1993, we have been member of IOA and EOA and, over this time, we have cooperated with legal bodies to create new legislation, lobbied the Ministry of Health and represented our organisation’s members in dealing with insurance companies, doctors, ostomy pouch producers and other organisations.
The aim of the Czech ILCO is to help resolve health issues as well as the social and psychological challenges faced by ostomy patients in an effort to assist their return to life after surgery and to empower them to lead a normal life far beyond. We inform healthcare professionals and laymen both about ostomy patients’ needs, raising awareness on what life is like with an ostomy, and keeping them informed of our activities. Our remit is also to actively defend patients’ rights wherever we can.
In addition, our organisation prepares and produces training for volunteers wishing to support ostomy patients. With this in place, we have agreements with two hospitals whereby our volunteers can visit new ostomy inpatients and help them overcome the fears and trepidations associated with their surgery. Further, we organise lectures and discussions, take part in other patient organisation meetings and actively contribute to discussions on stoma-related issues. We place great stress on the need for prevention, encouraging our members to have regular doctor check ups and we always endeavour to challenge the taboo surrounding ostomy as a health solution.
WOD 2018 “Speaking out changes lives” – Czech ILCO activities
Bike ride through Czechia – “Beat your limits”
On 1-6 June 2018, ostomates from Czechia, Poland and Slovakia really got over their limits by riding across the whole country. The stage tour led from Hranice at Aš (the westernmost Czech city) via Hranice in Moravia to the eastern city Novy Jicin. The first stage was also attended by some ostomates from Germany; the last stage was supported by Hungarian ostomates. During these nine days, the cyclists covered 675 kilometres in nine stages. In eight cities, meetings took place at which the riders discussed with the locals how they can overcome problems related to such serious disease. Altogether 14 ostomates (including 2 ladies) aged 34-73 covered the whole tour from start to finish; some more participants joined the peloton during the tour. 30 cyclists crossed the finish line. Jón Thorkelsson, President of the European Ostomy Association rode five stages from Prague to Nový Jičín. The tour was organized by Czech ILCO in cooperation with ConvaTec (the general sponsor of the event). See https://www.youtube.com/watch?v=zrDDlSBybQU.
International Conference
The international conference to celebrate the 25th anniversary of Czech ILCO and remind the World Ostomy Day 2018 took place in Prague on 12-14 October 2018. The conference was attended by 109 ostomates and their friends and guests who were presented lectures on history of Czech ILCO as well as on the work of the volunteers and international cooperation. Among the topics were also new ways in bowels surgery and prevention of diseases. The lecturers were Czech experts as well as guests from Slovakia and Russia. Legislation concerning the ostomy patients was also tackled.
DVD “Health in move”
Our team led by Ms Lunackova from the spa of Karlovy Vary (Carlsbad) prepared a series of easy, simple and efficient exercises for ostomates. The sponsorship of Coloplast enabled us to record the exercises (performed by members of Czech ILCO Marie, Irena and Filip) on the DVD. It can be obtained in the information centre for ostomates in Prague as well as in the regional associations. The video can also be found on YouTube.
Appreciation of ostomy nurses
Czech ILCO decided to extol and appreciate the best ostomy nurses. From January to August 2018, we organize the survey on Facebook and in the regional ostomate associations. The ostomates were addressed by a questionnaire focusing on the following criteria:
- Work of an ostomy nurse appreciated by ostomates (the highest number of votes);
- Long-term cooperation with Czech ILCO or with a regional ostomates’ association;
- Publication activity.
From 40 ostomy nurses named by 115 respondents, 10 best nurses were appreciated during the international conference held on the occasion of 25th anniversary of Czech ILCO and the World Ostomy Day 2018.
Start of project “We Swim”
Swimming was also part of the International Conference activities. We ostomates took part in an event organized by Alliance of Women with Breast Cancer under the Breast Health Day. It was the second participation of Czech ILCO at this event realizing thus this year’s motto of the World Ostomy Day “Speaking Out Changes Lives”. We introduced the poster we intend to present in the pools and bathing places in the next year. Its design is inspired by Iceland ostomates, the pictures being provided by Jón Thorkelsson, Chairman of the ILCO Iceland.
International V4 sport games of ostomates
The third meeting of ostomates from V4 (Visegrád Four) countries (Czechia, Hungary, Poland, Slovakia) took place in Novy Jicin from Friday 8 to Sunday10 June 2018. At a seminar on WOD 2018 held on Friday morning, representatives of the participant countries spoke about life of ostomates in their countries and ways of supporting the activities of their ostomy associations. In the afternoon, teams of the four countries competed in discgolf, bowling and Mölkky game. Saturday was the day for public activities – information stand of Czech ILCO and a trip on the Svinec hill. Along the way, there were information tables concerning life with an ostomy. The whole day’s accompanying program culminated with arrival of the ostomy cyclists who finished their nine day ride through Czechia. They were welcomed by local people (including the Vice-Mayor of the city) as well as by ostomates from four countries.
Other activities under WOD 2018
Brno Oncology Days – poster for World Ostomy Day; Information stand (three days) for expert public on ostomy associations and their volunteers.
Touring exposition of League Against Cancer focused on bowels cancer prevention. Czech ILCO presented a stand for two days in seven cities in Czechia informing on activities of ostomy associations and on World Ostomy Days. We talked with people about problems with bowels and stressed the importance of preventive screenings. We also showed that even with an ostomy life can be good.
Meeting of young ostomates
Two meetings of young ostomates from whole Czechia were held in 2018. Topics: meeting with an ostomy nurse, diets (discussion with a diet expert).
Prague Surgery Days + Ostomy Days, Clarion Hotel Prague, 10-11 May 2018, lecture of Marie Ředinová and young ostomist Pavla Štikarová for 100 nurses on life with an ostomy and needs of ostomates
Meeting of League Against Cancer – Lecture of Marie Redinova – Czech ILCO “Fear is a bad counsellor”
9 June – Health Day – ILCO stand in Hranice na Morave
9 June – Health Day – ILCO stand in Novy Jicin
14 June – Health Day – in CONTEMPLATION GARDEN – exposition installed by the local charity focused on disabled people, education of the public
17 July – Meeting of ostomates with public in Odry under WOD 2018
23 August – Charity event in Hranice – ILCO stand
12 September – Social Services Day – ILCO stand in Novy Jicin
2 October – Exposition on 9th WOD, 20-30 October 2018 in Valasske Mezirici
10 April – Lecture for the ALEN club – Prevention of bowels diseases, ILCO volunteers, WOD
12 April – FIT-ILCO Prague – 25th anniversary of the association, WOD 2018
23 April – Prague 2 – lecture “Life with an ostomy” and World Ostomy Days
3 May – Příbram – 15th anniversary of the local association, WOD 2018
16 May – Health Day Prague 5 – ILCO stand with motto “Speaking Out”
4 June – Tábor – 20th anniversary of the local association, WOD 2018
16 May – Health Day Prague 2 – ILCO stand with motto “Speaking Out”
22 September – St. Wenceslas IBD Conference – ILCO stand with motto “Speaking Out”
27 September – Červenohorské sedlo – Recondition of ostomates from Ostrava association – lecture on World Ostomy Day
6 October – Day of Democracy 2018 (Forum 2000) – ILCO stand – Information about activities of ostomy associations in Czechia and in Europe, focusing on WOD 2018 Speaking Out
27 October – Health Day in Ministry of Health of the Czech Republic – ILCO stand with motto “Speaking Out”
3 November – Lecture for Health Club in Prague 5 with motto “Speaking Out”
6 November – Conference “Differently does not mean worse” – VFN hospital Prague, lecture for nurses
14 December – Health Day in Motol hospital ¬– ILCO stand with motto Speaking Out Changes Lives
Media
4. Recording of TV programme with Tereza Nagyová in ILCO – with participation of other ostomates – Marie Redinova, Jana Ptacková, Stepan Pavlisce and Frantisek Houf.
7 May – Radio APPLAUS – programme on 25 years of Czech ILCO and World Ostomy Days – Alice Krepinska and Marie Redinova
1 June – Czech TV Channels CT1 and CT24 – programme Studio 9 with Marie Redinova and Anna Hofmannova about the bike ride– “Beat your limits”
9 June – TV Polar.cz – report on Bike ride through Czechia – “Beat your limits”
10 September – on-line lectures Amelie: Life with an ostomy and ostomates – Marie Redinova
Articles on WOD 2018 in the magazines for ostomates: Radim, Helios, Klokanoviny, Stomicke listy. Newsletter League Against Cancer , Medical Tribune (interview with Czech ILCO President), Newsletter ILCO.
Summary
During the whole year the members of Czech ILCO spoke openly in order to change the general opinion on ostomates. Our bowels are worth of speaking of because their proper function determines our good temper and sometimes even our life. We are grateful for this year’s WOD motto Speaking Out Changes Lives. In accordance with it we will go on helping ostomates and informing the public.
We inform on our activities on our website ILCO.cz and on Facebook Ceske ILCO.
Marie Redinova
President of Czech ILCO
Praha 5.12.2018
