With the historic Tyne and its famous bridges nearby, more than 170 people came together at the County Thistle Hotel, Newcastle on the 7th March to participate in another of CICRA’s successful regional information days.
Though coming mainly from across the north of the UK, but some travelling from further afield, the large gathering of young Crohn’s and Colitis patients and their families enjoyed the opportunity to be together and to learn more about IBD (inflammatory bowel disease) from the wide range of presentations provided during the morning’s programme and to chat more informally during the breaks.
On behalf of CICRA, Vice Chairman Rod Mitchell welcomed everyone to the Newcastle day and introduced CICRA’s Honorary Medical Director Dr. Nick Croft from London who moderated the morning programme of speakers and the linked question sessions.
Dr Su Bunn, Consultant Paediatric Gastroenterologist (supported by Nurse Christine Maville, Specialist IBD Nurse) spoke about the IBD services available at the Royal Victoria Children’s Hospital in Newcastle and of the very large area covered. She mentioned particularly the large number of new cases in the north east and also the high numbers in Scotland. She talked about Azathioprine/6 Mercaptpurine treatment and Monitoring and highlighted the sometimes serious side effects and the need for regular blood tests to help keep children safe. Using a new text system patients/families are reminded when blood tests are due and ideally these are done at the RVI but given the large rural and urban referral catchment area tests are sometimes carried out by the GP or local hospital.
Next to speak was 16 year old Yasdan who spoke eloquently and positively about living with Ulcerative Colitis (Yazdan’s full talk will be posted on our website soon).
Professor Jack Satsangi, Professor of Gastroenterology in Edinburgh, talked about the progress of the last 10 – 15 years in the area of genetics, now moving to epigenetics. This included a better understanding of the diseases, the tailoring of new drugs, the use of imaging technology, the monitoring of treatments but also the ever rising incidence of inflammatory bowel disease in children and young people. He commented that the last decade had produced a genetic revolution but worryingly too an increase in early and very early onset IBD. While genetics play a part, there are definitely environmental triggers to the disease which have yet to be fully understood and why children with IBD are more likely to develop other autoimmune diseases. Over the next decade a better understanding of gut microbes will play an important part too. When ending his presentation Professor Satsangi reminded the audience that there had been a 50O % increase in Crohns and colitis in the past 50 years and he thanked CICRA for funding part of his important epigenetic predisposition research study. He said that going forward with new research, what patients want is prevention and cure, also the funding of novel therapies and personalized care.
Newcastle Consultant Paediatric Surgeon Bruce Jaffray spoke about the surgical management of Crohn’s disease and Ulcerative Colitis mentioning that the basic need to consider was whether the young patient has “Crohns”, Ulcerative colitis or Indeterminate colitis. He reminded the audience that In UC, surgery should provide a cure, albeit with a stoma or pouch, but surgery for Crohn’s, although sometimes necessary, it is not a cure.
Dr Kate Blakely, Consultant Psychologist from Barts & The Royal London Hospital spoke about the psychological issues affecting children and young people with IBD, many not knowing what to expect after receiving a diagnosis of Crohn’s or Colitis. She explained that after a period of extended illness children can feel low and experience loss of friendships and anxiety and worry about school attendance, rehabilitation and surgery. As children became older and more independent they may have concerns or worries around school, peers, career, body image and their sexuality and that young people on steroids may need to be screened for depression.
Dr Richard Hansen spoke about IBD microbiology and avenues for new (microbial) therapy – an interesting and humorous presentation which was enjoyed by the young people and parents. He explained that there are no curative treatments, Crohns and Ulcerative Colitis are lifelong conditions with no single cause. He talked about three revolutions in IBD, Genetics, Microbiology and Therapeutics. He used the analogy that your gut is like a beach attacked by ‘bad guys and villains’ and had a slide of a beach invasion and pictures of villains from films and cartoons. He also spoke about Exclusive Enteral Nutrition (EEN) and Faecal Transplant. In closing he urged families to get behind CICRA, support their local IBD team and consider participating in research.
17 year old Sophie was next to present and this was just like her – enthusiastic, bubbly and full of personality (Sophie’s talk will be posted on our website soon).
Dr Andy Stagg, an Immunologist from Barts & the Royal London, explained that the increase in recent times of immunological disorders such as Crohns and Colitis may have something to do with the world we live in. People develop IBD because of both a genetic and environmental link. He said that immunology can be useful when treating IBD and, with increased understanding through research, they can do this better.
Rachel Tayler ended the morning by explaining the RVI process of transition – moving from children’s to adult services. This was done with careful planning and preparation by the team prior to the move to enable the process to be as stress-free as possible.
Following a short presentation by Rod Mitchell titled “CICRA – How it all began and what we do”, Wendy Loosley (CICRA’s Fundraising Administrator) gave a brief resume of fundraising, encouraging everyone to take up the challenge to organise or participate in a fundraising event for CICRA, no matter how big or small.
CICRA were delighted to receive a cheque for £853.83 from Janine Whitlow representing Thomas Ashton School, Cheshire. The pupils, parents and staff of Thomas Aston School held a Christmas Fair and market stall to raise funds for CICRA.
As part of Wendy’s Fundraising presentation, Oli Monks introduced the audience to his “Nine for Nicky Campaign” (www.ninefornicky.co.uk). Having already successfully completed 3 of the 9 challenges Oli will be taking on the challenge of the Edinburgh Night Ride in June and ‘Trekking the 3 Peaks’ in August. Oli extended the invitation to everyone present, to join him and his 15 strong team for the 3 Peaks Trek!
In the afternoon the young people joined their own age group while their parents rotated through small discussion groups of their choice. It gave parents an opportunity to ask questions of the medical professionals whilst the ‘Teenagers’ and ‘Young Adults’ had their own groups and were able to put their own questions to a professional and chat to others of their own age.
A local entertainer, Graeme Shaw, kept the very young children happy with magic and balloon fun enabling “mums and dads” and other family members to join the discussion groups in the knowledge that their children were looked after in a safe environment.