No significant differences were found between treatment with ciclosporin and infliximab. Treatment failure at day 98 was seen in 60% of patients given ciclosporin compared to 54% given infliximab. At the start of treatment if patients showed improvement they did so within 7 days in both groups. 16% of patients treated with ciclosporin and 25% of those treated with infliximab had problems with the treatment. This mainly involved worsening of symptoms but included other problems such as severe infections and liver or kidney disease. 17% of patients taking ciclosporin and 21% of patients taking infliximab had a colectomy for disease that did not respond to treatment.

This is the first study to compare the two most common treatments for severe active UC that is unresponsive to steroids. From the results of previous studies, ciclosporin may have been expected to work better than infliximab but this study showed no difference. The authors concluded that the choice of which drug to use should come down to the local hospital experience.

Click here for full article

TW

Overall, the day was a huge success with over 140 family attendees, great clinical input and a superb venue at the Novotel City Centre.

One of the biggest benefits of these occasions is that parents and young people can meet others who are facing similar challenges, and this event was no exception. There was a real buzz about the venue as families met and swapped stories.

The event was chaired by Dr Sue Protheroe, Consultant Paediatric Gastroenterologist at Birmingham Childrens Hospital and Dr Nick Croft, CICRA Medical Director, who kicked off the meeting with a warm welcome to all who had braved the weather to attend. The day was structured around talks in the morning and discussion groups after lunch.

Dr Anna Pigott, Consultant Paediatric Gastroenterologist at University Hospital at North Staffordshire, set the ball rolling with a talk on the importance of early diagnosis and a team care approach to IBD. “Early diagnosis is so important because it enables quicker and less complex treatment, and crucially there may be less impact on a child’s growth” explained Dr Pigott. Time to diagnose childhood IBD has fallen dramatically since the 1970’s, when it could take up to 3 years! At North Staffs the average time from GP visit to consultant appointment is 12 days, as local GP awareness is good and the hospital is set up to ‘fast track’ new patients. However, nationwide there remain issues with mis-diagnosis and mis-referrals. At CICRA we still hear of young people mis-diagnosed with irritable bowel or anorexia, or referred to adult units which may lack the specialist knowledge to treat children. Finally, early diagnosis is very important in the case of flare ups. This is where the whole gastro team, such as the specialist nurse and dietician, play a key role: patients are encouraged to contact their unit at the first sign of a flare up so that it can be treated before it becomes too serious.

Next up, Ranjit Sandhu, a Gastroenterology Specialist Nurse gave an insightful description of the role of an IBD nurse. The specialist nurse is a vital part of any gastroenterology team with a broad range of responsibilities. Paramount amongst these is to ensure that the patient has the best experience possible, which includes co-ordinating the care they receive, educating them about their condition and acting as advisor, counsellor and confidante. Often the IBD nurse will be the main point of contact for a patient, particularly when they are at home. The nurse will also run specific clinics focussed on the softer, less medical aspects of IBD such as lifestyle, relationships and careers. Other key tasks include liaising with schools and helping manage the transition of young people in to adult care when the time is right, which can vary from person to person.

As ever, one of the highlights of the morning was the young people’s and parents’ perspectives on living with IBD. Chloe Bayliss showed an inspiring video montage that she had made, of the ups and downs of her journey through diagnosis and treatment of Crohn’s Disease, while her Mum Susie talked about the worries of a parent. Vikram Maan gave a very clear, mature description of his experiences with Ulcerative Colitis,  and his Mum described some of the alternative therapies they had investigated in their desperation to find a cure. The ‘rollercoaster’ experiences they described would be familiar to many families at the event. Everyone in the room was inspired not just by their courage but by their positive attitude moving forward.

Janette Vyse, Lead for Patient Experience & Participation, and Dr Rafeeq Muhammed, Consultant Paediatric Gastroenterologist, both from Birmingham Children’s Hospital then took the floor to describe the ongoing efforts underway at BCH to improve the experience of young IBD patients. There are a number of national policy drives to improve the patient experience, not just in terms of physical treatment but also the emotional experience. At BCH, this means keeping patients informed, occupied, and recognising some of the less obvious causes of anxiety; such as admission to hospital, conversations with other patients (in the absence of medical staff), car parking for parents and keeping relatives informed. Other exercises include an NHS Change Day, new ‘Dignity Giving Suits’ to replace traditional hospital robes, and a patient feedback app.

Dr Muhammed then talked through the work of the Parent Patient Panel at BCH, which is a quarterly meeting at BCH involving patients, parents, family members, school teachers and ward nurses. The aim is partly to provide education and awareness, partly to gain feedback to improve services, and partly to allow patients, families and staff to interact and share experiences away from the day to day wards and clinics. It is co-ordinated via a facebook group, and has led to several improvements to service being made, and has received good feedback from group members.

One aspect of IBD that can cause a lot of anxiety is the possibility of surgery. Mr Ingo Jester, from the Department of Paediatric Surgery at BCH, gave an overview of how children and young people can be helped through surgery. Surgery is historically often seen as a “rescue” treatment to be used after other options, such as enteral feed, steroids and azathiaprine have failed to induce remission. Patients often have fears about pain, complications, lengthy hospital stays and scarring. However, there have been many advances in IBD surgery in recent years which should make it much less of a cause for concern.

For example, a combination of immunosupression and surgical therapies can improve outcome and quality of life, and advances in surgical approach and technology have reduced the associated complications. Around 30 to 40% of patients with Ulcerative Colitis may require surgery, either as a planned or emergency treatment. “Minimally invasive surgery” (laparoscopy) is regularly used, as in the short term there is less pain, less scarring and shorter hospital stays, with no long term difference in outcome compared with open surgery. Up to 70% of Crohn’s Disease sufferers may also require surgery to treat complications such as structures and fistulas. Again, this is increasingly performed laparoscopically, which can lead to earlier return of bowel function, shorter hospital stay, fewer late small bowel obstructions and decreased early complications. “Surgery”, concluded Mr Jester, “is not the end of the world”.

To conclude the presentations, Professor Tom MacDonald, Dean for Research at Barts & the Royal London Hospital gave an update on the latest progress in research, treatment and care.   Immune related diseases are a major research focus today, as over the last 50-60 years  major infectious diseases like mumps, measles, hepatitis and tuberculosis have dramatically reduced while immune disorder such as Crohn’s Disease, Type 1 Diabetes, Asthma and Multiple Sclerosis have significantly increased. Research can typically focus on gut bacteria, genetics, or immunology and inflammation: which is the major focus at present.

Inflammatory bowel disease is caused by a hyperactive immune response in the gut wall. “In Crohn’s disease we think the immune system is over-reacting to normal gut bacteria, however in Ulcerative Colitis, the cause of the over-reactivity is much less clear” said Prof MacDonald. Treatment for IBD is therefore aimed at dampening the immune response. However, corticosteroids can have harmful side-effects, and azathiaprine can take time to work; both of these are a bit like a ‘blunderbuss’ approach. Immunologists have discovered a lot of molecules involved in the highly complex inflammation response. “Anti-TNFα antibodies have revolutionised IBD treatment” explained Prof MacDonald. Biological / anti-cytokine therapies such as Infliximab induce remission in 50% of patients.

However, there are still challenges ahead. For instance, revolutionary though Infliximab is, there are still 50% of patients who do not respond to it. And for those patients who do respond, this responsiveness can wane over time. There is therefore continuing interest in drugs which may be better than anti-TNF’s, and that can be used on patients that either do not respond to anti-TNF’s or have lost their responsiveness. Trials are also underway on Tofacitinib, a pill which may treat Ulcerative Colitis. Patients should take heart that thousands of researchers around the world are working on IBD. In short, concluded Prof MacDonald, “restoring the gut to its original healthy pre-IBD state is doable”.

After an excellent buffet lunch, which gave attendees the opportunity to meet each other and visit some of the stalls, the meeting was divided up into interactive discussion groups, each hosted by clinical experts. Families had the chance to visit three groups over the course of the afternoon, from the following:

• Living & Coping with IBD
• Research
• Clinical & Treatment
• Diet & Nutrition                              
• Surgery & Stoma Care

The younger children were kept happy with a children’s entertainer while the teenagers had a discussion group of their own with Dr Nick Croft and CICRA’s young person representatives, Louise & Jordon. 

The day was rounded off with a short plenary session, where trustee Neil Gooding and Vice-Chairman Rod Mitchell gave a brief insight into the work of CICRA.  ]

Dr Sue Protheroe closed the meeting.

CICRA would like to sincerely thank Dr Protheroe and Dr Croft for chairing this event; the clinical staff who gave up their Saturday to support this event, the volunteers who helped organise it; and above all the patients and families whose active participation made the day such a success.

The results challenge some established ideas from previous adult studies, firstly that the overall variety (diversity) of bacteria are reduced in UC compared to normal – this was not the case here but was true in Crohn’s disease; secondly that Faecalibacterium prausnitzii is a bacterial species that is beneficial and is reduced in Crohn’s disease – in fact it was increased in Crohn’s here; and finally, that broad bacterial differences are important in the inflammation of IBD compared to normal – again this was shown not to be the case with no major changes between bacteria at “phylum” level, perhaps the simplest difference between bacterial species.

The F. prausnitzii finding in particular is important as this bacterium has widely been accepted as one of the “good guys” in Crohn’s disease, having previously been noted to be reduced in those who have recurrence of disease after surgery. The finding of increased levels in children with Crohn’s at first diagnosis mean we may have to think again about this bacterium.

Click here for full article

RH

With the usual format there will be speakers (including a young person talking about their experiences) followed by a buffet lunch and informal discussion groups where you can ‘Ask the Expert’ about almost any aspect of Crohn’s and colitis in the young person.

The groups we aim to cover are:

• Living and coping with IBD
• Research
• Clinical & Treatment
• Diet & Nutrition
• Surgery & Stoma Care

The teenagers will have their own session to ask questions of a doctor, nurse and young CICRA representative in an open discussion about living and coping with Crohn’s or Colitis plus any other subject that they wish – school, socialising, relationships etc. but they can of course stay with their parents if they wish.

An entertainer will be provided for the younger children for part of the day.

If you have a child or teenager with Crohn’s or Colitis in your family and would like to come along you are very welcome to join us. Please ring 020 8949 6209 or contact us through this link.

Rachel says:   

“I was lucky enough to be picked by CICRA to run and I am very honoured and proud to do so as this charity is close to my heart, as my 12 year old daughter Tegan was diagnosed with Crohn’s when she was 5 years old

Tegan has had her ups and downs with the disease, what with trying to control her flare ups and get the right balance of medication, to keep her in remission. She has been unwell this year, and ended up having a 5 day stay in hospital, which to some of you is not very long,  so in that respect she is very lucky. Tegan is in remission again thanks to the great work to all the medical staff who support us all year round.

If you could donate any amount to help raise funds for this great cause I would be truly grateful. My justgiving page is http://www.justgiving.com/rachel20plumb or text tigi (thats all in caps not the number one) then 99 so it reads to donate text TIGI99 £1, £2 or £5 to 70070.

The researchers looked at a large group of children from across North America and followed them up for at least one year. The children included were newly diagnosed with mild/moderate UC and treated either with 5-ASAs alone or with a combination of 5-ASAs and oral steroids. Those children who required more intensive treatment were not included.

The study showed that at one year 40% of the children were disease free without any additional medicines (in the form of steroids or other drugs to suppress the immune system). A further 15% had mild symptoms only, again without any additional medicines. Reassuringly, they found that these drugs were generally well tolerated with side-effects occurring in only 9% of children. These side-effects prompted discontinuation in around half.
This study supports the common practice of using 5-ASAs in treating children with UC and shows us that this “simple” first line therapy can be useful in keeping children well without them having to progress quickly to drugs which affect the immune system.

Click here for full article

FC

• Living and coping with IBD
• Research
• Clinical & Treatment
• Diet & Nutrition
• Surgery & Stoma Care

The teenagers will have their own session to ask questions of a doctor, nurse and young CICRA representative in an open discussion about living and coping with Crohn’s or Colitis plus any other subject that they wish – school, socialising, relationships etc. but they can of course stay with their parents if they wish 

An entertainer will be provided for the younger children for at least part of the day.    

If you have a child or teenager with Crohn’s or Colitis in your family and would like to come along you are very welcome to join us.   Please ring 020 8949 6209 or contact us through this link.          

UNIVERSITY OF ABERDEEN

December 10, 2012

‘Good’ bug may have role in bowel disease

A bug thought to be one of the ‘good bacteria’ in our gut may actually have a role in the development of a bowel disorder that is on the rise in Scotland.

That is the possibility being raised by University of Aberdeen scientists who have published research which found significantly high levels of Faecalibacterium prausnitizii in the colon of children with Crohn’s disease.

Up until now the bug – one of the most common found in the gut – has been associated with Crohn’s disease but in a ‘protective’ way, because other studies have found it in low levels in patients with Crohn’s, and because it has anti-inflammatory properties.

The findings have surprised scientists because it goes against current thinking. However they stress more research is needed into F. prausnitzii before they really understand the part the bug may play in the disorder, which has increased five-fold in Scottish children over the last 35 years.

Researchers recruited children from Aberdeen, Glasgow and Dundee onto their study which was looking for potential bacterial triggers for inflammatory bowel disease (IBD) – Crohn’s disease and ulcerative colitis – which affects around 6% of the Scottish population.

Children were recruited when they attended hospital for a colonoscopy to confirm or rule out whether they had IBD.

Dr Richard Hansen, Clinical Lecturer in Child Health at the University of Aberdeen, was the study co-ordinator for the work just published in the American Journal of Gastroenterology.

He said: “There is a lot of research into inflammatory bowel disease but much of that has focused on Crohn’s disease and ulcerative colitis in adults.

“We wanted to study as ‘pure’ a population as possible – by that I mean people who have not yet had an intervention or treatment for their IBD, and are less likely to have other illnesses, or to have made lifestyle choices, such as being a smoker or drinking alcohol.

“Ours is a unique study because this type of research cohort has not been studied by IBD researchers before.”

Blood and tissue samples were taken from patients who were recruited over a three year period and were aged between two and 16 years.

Recruits from this study came from the larger BISCUIT- Bacteria in Inflammatory bowel disease in Scottish Children Undergoing Investigation before Treatment – study which recruited a total of 100 children over three years, including 44 presenting for the first time with IBD and 42 who had a normal bowel.

Thirty four recruits were selected for a more detailed analysis, including 11 with Crohn’s disease, 11 with ulcerative colitis and 12 ‘controls’ with a normal bowel.

Bacteria in the samples were then identified using the latest DNA ‘sequencing’ technology.

Dr Georgina Hold, Senior Lecturer in Gastroenterology, at the University of Aberdeen and senior author on the study, said: “We found no significant changes in types of bacteria present across the three groups although there was less variety in the species of bacteria in kids with Crohn’s disease.

“However we did see a significant increase in the bacterium Faecalibacterium prausnitzii in children with Crohn’s disease.

“This was a surprise because other studies of patients with Crohn’s disease have reported a reduction in levels of this bug which supports current thinking that it is somehow protective.

“However our finding suggests that this particular bug may not always be a ‘good’ bacterium and may actually contribute to the development of the disease.”

Dr Hansen added: “We now plan to carry out a further study to look at Faecalibacterium prausnitzii specifically and to relate this to a liquid diet treatment that is commonly used to treat Crohn’s disease in children.

“We also need to understand more about how to restore and retain the normal bacterial communities within the gut.”

The study was funded by Chief Scientist Office and also CICRA – Crohn’s In Childhood Research Association.

ENDS

 Those interested in learning more or making their views known can visit the relevant web page by clicking on to  http://www.dh.gov.uk/health/2012/11/constitution-consultation where there is info about responding to the Department of Health (UK) consultation on line.

For further information you can link to a UKCRC leaflet that explains why and how patient data is used: http://www.nhs.uk/Conditions/Clinical-trials/Documents/Research.pdf

 Also the Wellcome Trust have an excellent guide to responding to public consultations here: http://wellcometrust.wordpress.com/2012/10/02/a-simple-guide-to-public-consultations/.

Please note that the consultation closes on 28 January 2013

You will see on the site that in April 2013 responses to the consultation will be published,  as will an updated NHS constitution

This paper showed specially manipulated mice that lacked just the induced (i)Tregs unexpectedly did not suffer from severe inflammation, such as seen in Crohn’s disease. Rather, they had a more “allergic” type of inflammation, such as seen in asthma (and in a modified form, in ulcerative colitis). They also had a different composition of bacteria in their intestine. The authors suggest this shows that in mice, it is the “natural” or “thymic” Treg cells that are important for restraining severe auto-immune disease but the induced Tregs may play more of a role in preventing allergy and controlling gut bacteria. This study is important, not just in helping to understanding the role of the gut in the immune system, but also because laboratories are in the process of trying to use Treg cells in treatments of various autoimmune diseases, and it is therefore critical to understand their functions as much as possible.

Click here for full article

EG