Monthly Archives: November 2019

Comedy Crohnies Raises £2500

Our hugely popular Comedy Crohnies event landed at The Loft at Brew 74 in East Kilbride on Saturday, 23 November.

Featuring a top comedy line-up of Scott Agnew, Gary Little, Connor Burns and Iain Hume, this was our debut East Kilbride performance and we were absolutely delighted when we found out that the event had sold out in advance!

We run these events to increase awareness of Inflammatory Bowel Disease (IBD) in Scotland and in a night full of belly laughter, half-time rolls and a charity raffle, we’re delighted to reveal that we raised £2500 for the Catherine McEwan Foundation!

This was our last Comedy Crohnies of 2019, but do please keep checking our website or follow our Facebook page as we will be announcing more events shortly for Glasgow and East Kilbride in 2020.

Tea Jenny 10!

We’re delighted to announce that the Tea Jenny Ladies Lunch will return to the DoubleTree by Hilton Hotel on Cambridge Street in Glasgow on Sunday, 13 September 2020. In what will be its 10th event, it follows the huge success of the recent September Tea Jenny, where 300 women partied the afternoon away and raised an incredible £20,000 for Glasgow Children’s Hospital Charity.

Jenny Cook is a Young Ambassador for the Catherine McEwan Foundation and each year holds the Tea Jenny event to increase awareness of Inflammatory Bowel Disease (IBD) in Scotland and raise money for the Foundation and Glasgow’s Children’s Hospital Charity. Both these charities are very close to Jenny, who has been suffering with Ulcerative Colitis since 2007.

So far, Jenny has raised over £400,000 for both charities!

These vital funds will offer a major benefit to the Catherine McEwan Foundation funded CD-Treat diet project. The aim of the diet is to provide fridges for the CD Treat food for all patients, a delivery service for the food, and to collect samples for testing. 

This will have huge value to the ongoing success of the project as it continues to grow throughout Scotland.

Big congratulations to Jenny on yet another fantastic event and a special thank you to all the loyal ladies who come every year and support the cause.

With demand for tickets already extremely high, you can make sure you don’t miss Tea Jenny 10 by booking your place here.

Early-bird tickets are only £30, which includes a sparkling reception, three course lunch, a glass of wine and all the usual fantastic entertainment.

Rachel Harris

After 16 fantastic months, our Catherine McEwan Fellow, Rachel Harris, has now moved onto a new position. Rachel joined the team at the Royal Hospital for Children in Glasgow and has been involved in some fantastic research and studies into Crohn’s and Colitis in Scotland. We asked Rachel to give us an insight into her time as a Fellow and the work she has been doing on IBD within that time…

Hello everyone! Sadly, my time with the IBD team at the Royal Hospital for Children, Glasgow has come to an end. However, as a team, we have achieved so much during my 16 months as Catherine McEwan Fellow and I would love to tell you all a little bit about that. 

As a new role within the department, my time was split between working with the Clinical Research Facility on lots of different IBD-based research projects; and the clinical areas of RHC as a doctor looking after the gastroenterology inpatients on the ward, and outpatients within the IBD clinic. This is where some of you may have met me! 

My role has proven to be a fantastic addition to both the clinical and research teams! As well as looking after our lovely patients, we have managed to produce a number of very exciting research projects which we hope will make a positive impact on our present and future patient. 

During my time with the IBD team I have worked very closely with Lisa – our fabulous IBD research nurse – and the research and clinical teams, to enrol our patients into a number of international studies. These include the Inception Cohort and Safety Registry, a very important study collecting information on new IBD patients from diagnosis, aiming to assess the safety and effectiveness of the treatments we currently use.

And also the Reduce Risk study, a trial looking at the most effective way to treat patients with newly diagnosed Crohn’s disease and keep them well. 

These studies aim to provide us information on which treatments work best for our patients on a global scale and the results will help inform the decisions we make for our patients in future practice around the world. 

We have highlighted a number of specific things which we have noticed in our patients by describing their cases in medical journals. These have included reports highlighting skin staining or low mineral (phosphate) levels as side effects of iron infusions in IBD patients. We have highlighted these cases to reduce the chances of the same problems happening to patients elsewhere.

Our study looking at steroid use and dependency within our IBD population has also been published. Steroids are good for making IBD better but can have side effects, especially if you are on them for a longer time. 

This study was to highlight patients who had been on steroids for longer than recommended. We looked for signs of steroid use in more than 200 patients. This highlighted we have low rates of steroid use and for the vast majority, plans were put in place to allow patients to come off steroids as quickly as possible, while still trying to keep their IBD under control.

We have also submitted data to national and international studies, looking at the high total numbers of children with IBD in Scotland, how patients with bad colitis that need hospital stays do (acute severe colitis), and the use of a new therapy (ustekinumab) being used in Crohn’s disease. 

Our work has been presented at local, national and international meetings; and all of these publications and presentations aim to increase awareness of complications and other issues relevant to IBD patients within the medical community and ultimately improve patient care. 

Our department also had the honour of hosting the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) annual meeting in Glasgow in June of this year. This was not only an excellent learning opportunity for our team, but also an opportunity to showcase our research and service to an international audience. The conference hosted nearly 5000 health professionals working within our field from all over the world, who were very impressed with what Glasgow had to offer! 

I have also been involved in the supervision of University of Glasgow medical students who were spending their five weeks’ special study modules with us. These students helped to conduct some of the above IBD projects. 

We have had really great feedback from our students and hope that this has sparked their interest into paediatric IBD and research for future years.

Although I am moving on, I am very pleased to say that we were able to point a new Clinical Research Fellow, Rebecca Jackson, who will take over all of the very exciting projects ongoing within the IBD team – our work certainly doesn’t stop here. 

The research undertaken within our team at RHC is invaluable in helping clinical teams everywhere understand IBD better and develop new, more effective, safer treatments for our patients in the future. 

I feel so very lucky to have worked with such a fantastic team of doctors, nurses, specialist nurses, dieticians, AHPs and ward staff – not to mention of course our incredible, brave and resilient patients!

 I’m incredibly grateful to the Catherine McEwan Foundation for the opportunity to work with such an amazing and ground-breaking team.  

Although I’m really enjoying my new post within a fab new team, I consider the IBD team at Glasgow my home and will certainly stay in touch. 

None of what we achieved within the past 16 months would have been possible without the Catherine McEwan Foundation – so thank you once again for all of your support!

Rachel Harris

WE ARE PROUD TO ANNOUNCE OUR NEW CLINICAL RESEARCH FELLOW

Hello everyone! My name is Rachel Harris and I am the new Clinical Research Fellow in Paediatric Gastroenterology working between the Clinical Research Facility and the Royal Hospital for Children, Glasgow and am the 3rd Catherine McEwan fellow.

I am a junior doctor and after completing a placement within the paediatric gastroenterology department here at RHC in 2016 I loved my team so much I just had to come back! I currently split my time 50/50 between being a ward doctor looking after the gastroenterology inpatients and conducting various research activities from the Clinical Research Facility. We are so lucky to work within such a fantastic team of doctors, nurses, specialist nurses, dieticians, AHPs and ward staff – not to mention of course our amazing patients! I am really enjoying my new post and am incredibly grateful to the Catherine McEwan Foundation for the opportunity my role is giving me to develop my skills and interests in both research and paediatrics.

WHAT WE’VE BEEN WORKING ON SO FAR

There are currently lots of exciting research projects going on within the IBD team here at the Royal Hospital for Children which we hope will make a positive impact on our patients present and future. Recently I have been working alongside Lisa the research nurses on a new European wide Inception Cohort and safety registry; this will collect information on a 1000 new IBD patients at diagnosis in Europe and follow how they do after diagnosis. This will assess the effectiveness of current treatment plans in patients with IBD and how this relates to their symptoms and outcome. Thanks to the support we have been able to recruit many of the recently diagnosed patients into this study making sure patients from RHC will be well represented in this large and important study. Our team are also hoping to commence a randomised control trial looking at the drugs we use for maintenance of remission in patients with newly diagnosed Crohn’s disease very soon.

Now I have found my feet I am also working on several other studies including a study analysing the factors which may predict and affect treatment outcomes for patients with severe IBD (infliximab levels in IBD patients), complications from treatment with IV iron treatment and how to prevent these in future, plus outcomes and complications for pouch surgery for Ulcerative Colitis. I am also assisting in studies looking at the impact of exercise in IBD and bone health in IBD patients assessed by MRI.

The research undertaken within the paediatric gastroenterology team at RHC will undoubtedly be invaluable in helping clinical teams understand IBD better and develop new treatment strategies for the future; and this work would not be possible without the Catherine McEwan foundation – so thank you once again for all of your support!

Dr Rachel Harris (3rd Catherine McEwan Fellow) July 2018

NEW STUDY HIGHLIGHTS USEFULNESS OF LONG TERM FEEDING TUBES IN PATIENTS WITH CROHN’S DISEASE

We have recently published work (supported by the foundation) in June of this year highlighting the outcomes from one of our studies undertaken by Hazel Duncan clinical and research dietician.

Children and young people with Crohn’s disease can have problems gaining enough weight and a small number can require a long term feeding tube to be placed to help them gain weight.  In the short term we use nasogastric tubes but longer term these children should have a gastrostomy inserted.  There is not much research assessing the implications on growth in these patients and therefore we decided to review the progress our patients had made using gastrostomies and publish the results.

Between 2003 and 2010 we had 16 patients with Crohn’s disease who had had a gastrostomy placed, 9 of the 16 reported temporary complications which resolved in a month and only one patient reported long term complications.  We looked at growth improvement from time of insertion until 2 years following insertion and found that there was a marked improvement in their weight and body mass index (BMI)scoring 1 year later. An improvement in height after  2 years  was also found.  We also looked at the type of feed used and the volume each patient had.

From the results of our study we know that for patients with Crohn’s disease gastrosotmy tubes are very useful to promote weight gain and improve growth outcomes.  This is important for patients who may be struggling to achieve adequate nutrition through their diet alone.  We also can now provide reassurance to families and patients that insertion of gastrostomies in patients with crohn’s disease is both safe and effective.

The full journal article Duncan H, Painesi A, Buchanan E, McGrogan P, Gerasimidis K, Walker G, Haddock G, Russell RK. Percutaneous endoscopic gastrostomy placement in paediatric Crohn’s disease patients contributes to both improved nutrition and growth. Acta Paediatrica 2018;107(6):1094-1099.  Thanks again for the support and if anyone has any further questions or queries then please contact hazel or any  member of the IBD team.

NEW STUDY REPORT – THE OUTCOMES OF SWITCHING FROM ORIGINAL INFLIXIMAB (REMICADE) TO THE BIOSIMILAR (REMSIMA)

We have recently published work (supported by the Foundation) in June of this year highlighting the results from one of our studies, undertaken by Lisa Gervais, IBD Clinical Nurse Specialist / Senior Research Nurse.

Infliximab is a medicine which is increasingly being used as a treatment option for paediatric inflammatory bowel disease (PIBD). We have previously used Remicade but in 2015 a different form of this medicine (known as a biosimilar) called Remsima, was introduced and is now widely used in clinical practice. There was extensive research in adults looking at patients who has switched from one type (Remicade) to the other (Remsima), but limited data in children and young people. We therefore collected data from all 3 regional Scottish Centres to share our experience of this.

Between Sept 2016 and Jan 2018, there were 39 patients that were prescribed Remicade, of which 33 switched to Remsima. We collected results from tests such as poo and blood samples, medicine levels and review of symptoms. These patients were followed up for a period of 12 months.

Our results are promising and support the data that has already been published. Our findings show that switching from the original Infliximab, (Remicade) to the biosimilar; (Remsima) appears not to be associated with any increase in negative side effects and works just as well. This work is important as it was carried out for all children with IBD receiving these treatments at a similar time allowing a greater number of children to be studied. The work also resulted in a significant cost saving to the NHS of £1500 per patient per year or more than £60,000 for all the patients involved in the study.

The full journal article:

Gervais,L, McLean,L.L,  Wilson,M.L, Cameron, C, Curtis,L, Garrick,V,  Armstrong, K, Tayler, R,  Henderson, P, Hansen, R, Chalmers, I, Wilson D.C and Russell, R.K (2018) Switching from Originator to Biosimilar Infliximab in Paediatric Inflammatory Bowel Disease is Feasible and Uneventful. Journal of Pediatric Gastroenterology and Nutrition. doi: 10.1097/MPG.0000000000002091

This project was in addition to the many different research studies and audits that are running in our department for children with IBD many of which are supported by the Foundation.

I would like to thank the Catherine McEwan Foundation for their continued support. If anyone has any questions or would like more information, then please contact Lisa or any member of the IBD team.

Lisa Gervais – IBD Clinical Nurse Specialist / Senior Research Nurse

CARA MUIRHEAD BLOG

Hi, I’m Calum’s sister Cara.  I am 16 years old and was diagnosed with Crohns disease in 2016.

It was June and I was on holiday when I first started having symptoms.  These consisted of ulcers in my mouth and going to the toilet more than usual, wasn’t the best holiday I’ve ever had.  After heading home, the symptoms started getting worse and I had severe stomach pains.

After being treated much the same way initially as my brother and being told there was nothing wrong with me my parents were not convinced and managed to get me to see a specialist where I was tested and was diagnosed with Crohns disease.

I was put on modulen for 8 weeks which had amazing results and I finally felt normal, there were no more pains and the toilet and I drifted apart fortunately. But after the end of the 8 weeks of not eating anything and drinking disgusting shakes the flare ups started again and I was reunited with the toilet.  I was put on steroids for almost 3 months which helped but they made me gain weight amongst other horrible side effects. I am now on azathioprine daily and infliximab infusions every 8 weeks which has had great results and I am now symptom free.

My IBD journey has been scary and at times I asked myself “Am I ever going to be normal again?” The answer is yes with everything I’ve been through I can face anything now with the support of my family and friends.  I went on to sit my Nat 5’s the following year and passed them all. I’m still a normal teenage girl and whenever I can I help raise money to help find a cure for this awful disease.

We both feel quite lucky that our condition is responding well to the medication however neither of us know what the future holds, but isn’t that the same for everyone?

CALUM MUIRHEAD BLOG

My name is Calum Muirhead, I am 21 years old. I was first diagnosed with ulcerative colitis when I was 13 years old.

I was a typical happy go lucky healthy teenager who was competing and doing well in the Airdrie Harriers.  I had started doing extra training as I wanted to do well in the national cross-country championships, all my times began to improve as I became stronger and fitter. I never thought that I would become an Olympic medallist however I enjoyed athletics and the outdoor lifestyle and hoped that it would stay a part of my life. However, fate was to play its hand and my health started to deteriorate.

After numerous trips to the G.P. being told that it was maybe irritable bowel syndrome (the medication they gave me for that made it worse). I was also told that it was maybe just in my head, and was I being bullied, therefore causing anxiety.  The end result was I was losing weight at a rapid rate and constantly running to the toilet, losing so much blood that I was so weak I couldn’t move off the couch.

My dad had to carry me out to the car after getting an appointment at NHS 24, they instantly knew I needed to go to the sick children’s hospital in Glasgow as I was in a very bad way.  After seeing a Gastro consultant who did some scopes I was diagnosed with ulcerative colitis. It was a shock to find out that I had a lifelong condition, I had mixed emotions, all sorts of things were going through my head, what would this mean?  Would I have to give up on my outdoor lifestyle and sports activities, amongst other things.

My ulcerative colitis journey so far has seen me have periods of remission with flare ups, some I’ve been able to manage and some have put me in hospital.  The last couple of flare ups were particularly aggressive ones and I also contracted C diff, this was possibly due to the antibiotics I was taking to get rid of the cysts I had through taking steroids.  Since the last flare up I have been put on adalimumab injections or more commonly known as Humira which I administer myself every 2 weeks, along with this every day I take azathioprine and pentasa. This seems to be working for me at the moment and I am in complete remission.

I no longer do athletics initially due to the pains in my joints.  I took up cycling as this was non-impact. I no longer have joint pain; however, I am sticking with cycling and I have joined the local cycling club who I have represented at mountain bike events even finishing on the podium at Ten-Under-The-Ben in Fort William.

Doing all of this through all the flare ups and remissions can be difficult, just when I am at my strongest and fittest I have a flare up and I am back to square one again.

This is the reason why I am doing my biggest challenge in cycling so far – The North Coast 500 in 4 days for the Catherine McEwan Foundation.

CATHERINE MCEWAN FOUNDATION WORK HAS GLOBAL REACH

We are excited to let you know that a project supported by the Catherine McEwan Foundation in conjunction with the team at SOLUS UK was launched at the World Paediatric Inflammatory Bowel Disease meeting in Barcelona last week.

The Foundation has put together an app to help doctors and other health professionals to assist in amalgamating multiple pieces of information when making a diagnosis of IBD. The app helps by taking all of the information points together and then suggesting a precise IBD diagnosis of Crohn’s disease, Ulcerative Colitis or IBD unclassified. The app is called PIBD classes and is free to download for teams all over the world.

The application was presented to more than 500 delegates from more than 20 countries last week by Professor Richard Russell on behalf of the Foundation. Many delegates downloaded the app during the presentation and feedback during and after the world meeting has been very positive.

The app was developed on the background of work published by the Porto group of ESPGHAN. We hope that this together with our previous app will continue to help teams looking after children with IBD within and far beyond the west of Scotland.

CONGRATS TO RUSSELL!

We are delighted to announce that in recognition of his achievements within the field of paediatric gastroenterology especially inflammatory bowel disease Richard Russell has recently been promoted to the position of Honorary Professor by the University of Glasgow.

Richard has published more than 100 papers with most of them relating to inflammatory bowel disease. With international collaborators he was recently awarded a grant of more than 6 million Euros from the European Union to investigate new treatments for children with IBD.

He is currently the chair of the paediatric European Crohn’s and Colitis Organisation and is the lead of the children’s IBD team in the West of Scotland.
Richard and has team have worked with the Catherine McEwan Foundation closely for the past 9 years and our work together has proven to be very successful. To say we are proud of what he has achieved is an understatement.

Well done Professor Russell!
#IBDfighters