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CATHERINE MCEWAN FOUNDATION RESEARCH FELLOW WINS TOP AWARD

Another proud moment for the Catherine McEwan Foundation as our Research Fellow, Mhairi McGowan wins an award for the research work we are funding.

Konstantinos Gerasimidis, Head of research explains

“The number of bacteria which reside in our gut exceeds the number of cells in our entire body! The composition and function of these gut bacteria are mainly determined by the type and amount of food we eat every single day.

Food components that we eat are used by gut bacteria to produce an enormous number of bacterial products. These products are not only important for our gut health but also for the health of our entire body.

Alterations in the balance of healthy gut bacteria composition and function have been linked with the cause of conditions like allergy, obesity, diabetes and IBD.

Miss Mhairi McGowan, a Research Fellow funded by the Catherine McEwan Foundation is carrying out research exploring the interaction between food, gut bacteria and tuning of immune system in people with IBD. Mhairi with Miss Yunqi Koh, a fellow student from the Medical School in Glasgow,  explore how capable and efficient the gut bacteria of children and adults with IBD are to break down indigestible food components like dietary fibre and how these bacterial products interact with our immune system and induce or suppress inflammation.

Early data from this ongoing work suggests that the gut microbiota of patients with IBD is less efficient than people without the condition to break down fibre to molecules which play vital role in the maintenance of intestinal health and gut inflammation. These are really exciting findings and suggest that patients with IBD may not have the opportunity to experience the benefits of fibre intake in the same way that healthy people do.

Early findings of this work were presented at the annual meeting of the British Society of Paediatric Gastroenterology Hepatology & Nutrition in Bristol this year. Mhairi and her team have been awarded the Sean Devine Memorial Prize for the best research presented in the conference. Mhairi conducts her study in collaboration with scientists from the University of Glasgow and the clinical teams at Glasgow Royal Infirmary and the Royal Hospital for Children. Mhairi is using a state-of-the art gas chromatography , which has been funded by the Catherine Mcewan Foundation.”

PIONEERING CATHERINE MCEWAN FOUNDATION FUNDED RESEARCH WINS PRESTIGIOUS AWARD

Vaios Svolos a PhD student funded by Yorkhill Children’s Charity and work supported funding from the Catherine McEwan Foundation is looking at diet in the treatment of Crohn’s disease. He has been awarded the Best Investigator-Initiated Study Abstract Award 2016 at the 2016 European Crohn’s & Colitis Organisation (ECCO) meeting in Amsterdam. The ECCO meeting is the biggest meeting in the world solely devoted to IBD. His presentation “Crohn’s Disease-TReatment-with-EATing” diet (CD-TREAT diet) and exclusive “enteral nutrition on healthy gut bacteria metabolism” will be heard by an estimated 5000 people when he gives it in March. It was selected as the winner out of nearly 200 abstracts entered.

Vaios said, “In the study we gave the liquid diet normally used to treat Crohns disease to healthy adult volunteers. Then after a period of normal diet gave them our newly designed “CD treat diet” which looks like it had exactly the same impact as the liquid diet. We will shortly be running more detailed scientific analysis of the samples taken during the study before we then plan to then use the diet in patients with Crohn’s disease. Patients have told us they would prefer to have a solid rather than a liquid only diet to treat their Crohn’s disease so that’s what we are trying to do!”

This exciting ground breaking research is leading the way in IBD and it is with the combined support of the Yorkhill Children’s Charity and the Catherine McEwan Foundation that this has been possible.

A WORD FROM OUR YOUNG AMBASSADOR JENNY

Most of you will probably know my history with IBD, I was diagnosed age 4 with Ulcerative Colitis, I was on up to 20 medications a day to try and get it under control but it got to severe and I had to get surgery to remove my large bowel. In some ways I’m quite happy that it all happened when I was younger because I was quite oblivious to what was going on. I’m much better now as to how Ill I was 5 years ago, but IBD still affects me daily.

I can feel fatigued, this is one of the hardest things for people to understand that don’t have IBD. It’s a different feeling to just feeling tired. I can get 11hrs of sleep at night and wake up in the morning feeling exhausted. Sometimes even having a shower can be tiring. I use the toilet more than others and get sore joints and I don’t do day trips and sleepovers because I won’t use any other toilets apart from my own.

Starting high school this year was a big change for me. I was the last person to know what high school I was going to. And the anxiety and stress of it all overwhelmed me which resulted in me missing a month of school in June being ill, my last month of primary school. I missed the leavers service and prom and my friends didn’t understand all of it which didn’t really help me. But I’ve been at high school for 6 months now and have met great friends and the teachers are not only supportive of my illness but my fundraising too!

But if I didn’t have IBD I wouldn’t of met Derek and Julie McEwan who are now like part of my family, and other people I have became really close to over the years…

IBD can be a difficult thing to talk about, but raising awareness is really important and I want to help other people who are going through the same by raising as much awareness as I can.

Jenny x

NEW APP LAUNCH WILL HELP TEAMS LOOKING AFTER CHILDREN WITH CROHN’S DISEASE

The Catherine McEwan Foundation together with the Yorkhill IBD team and Solus UK have worked together to produce an app designed to help healthcare teams across the world looking after children with Crohn’s disease.

When a child with Crohn’s disease becomes unwell it is helpful to assess how severely the Crohn’s disease is “flaring” at the time. By using a standard set of 8 questions and blood tests doctors and nurses can generate a score between 0 and 125 as a guide to the need for further treatments and tests. The score is easy to use but is not easily accessible when needed by teams, especially in the emergency situation. This has changed with the development of the app allowing easy calculation of the score using a phone or similar device.

 

The original work from which the app was produced from was overseen by Professor Dan Turner from Jerusalem. He met with Derek McEwan and Dr Richard Russell (on behalf of the Yorkhill IBD team) to officially launch the app during his recent visit to Glasgow.

 

He was quoted as saying the app will be useful for clinical teams looking after children with Crohn’s disease all over the world. The app is now being used in the new children’s hospital and in hospitals throughout the west of Scotland.

The team are planning another project in the new year.

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DEREK’S STORY

In the first our new Blog features, Catherine McEwan Foundation Founder, Derek McEwan shares his experience growing up with his Mum battling severe Crohn’s.

IBD is a battle. It is a battle for the person who suffers every day. It is a battle for the family. It is a battle for the friends. It is a battle for the doctors. It is a battle for the nurses. IBD is a battle.

When I thought about it, my story and many others who have a family member who suffers from IBD is very relevant to the battle. IBD affects every single family member not just the patient.  Often the parents, the brothers, the sisters, the friends; their stories are forgotten by everyone except for themselves.

I lived with IBD as a loving son for 16 years. I suppose in many ways I still live with IBD now.

My mum, Catherine was diagnosed at the age of 16 with Crohn’s Disease. I’m told it took some time to actually diagnose her condition, a fact which unfortunately is still common today as patients suffer for years in some cases before a diagnoses. This is often due to poor IBD standards at certain hospitals.

When pregnant with me she was told that it would be a serious health risk to her and should consider not going through with the pregnancy as her ever more severe Crohn’s was likely to cause complications. This was never an option and Catherine went ahead thankfully!

My early memories of my Mum were of her constantly being at the Doctors and being in and out of hospital. That was normal life. I was an expert in waiting rooms and knew staff by first name. I could tell you what health message posters were on the walls of Gartnavel and the Western as well as our local Doctors. How was a 5 year old to know there was nothing normal about this?  I’d known it from the day I was born.

Catherine’s Crohns was severe. She had multiple major operations to remove parts of her intestine. Nothing seemed to work and regular flare ups meant more trips to hospital where stays could be for a few days or a couple of weeks.

Very often my mum’s hospital stays were not for surgery but to build her up. Her Crohns had caused her to fall to 6 stone so she required to be fed from a tube to build her up. She ate very, very little and what she did eat she passed very quickly and let’s just say, it wasn’t pretty going to the toilet after her!

I once thought I was to have a new baby brother or sister. Why? I found nappies in the cupboard! It was the only conclusion. I remember how difficult it was for my mum to explain that they were hers and she explained her illness and how these were for adults. The pain, the hospital visits, the constant toilet visits.  I can’t imagine how she felt that day but felt proud that I understood more of what was normal in her life, really wasn’t.

As the years went on nothing improved, and the pattern continued. The doctors told her she would require a colostomy bag. My mum refused point blank. What dignity & pride she had would not be taken by this. These days the inspirational Get Your Belly Out Campaign has had IBD sufferers wear their bags as a mark of pride and it is not so much of a taboo subject. Truly incredible!

In an effort to build Catherine up at home she was prescribed drinks called Complan. She hated them and we had a huge stock at home as she just couldn’t take the taste. I tried to sell our surplus Complan to the kids in the street as a “cool” new drink. Needless to say I never sold many and had the odd parent at the door!

Through all these health trials I can honestly say I never heard my mum complain once. She was positive, funny and lived for my brother, Gary and I. All she wanted was the best for her boys.

A real down turn in her on going health occurred when she was diagnosed epileptic. She would have extremely violent fits on a regular basis for the rest of her life. There is no link between Crohns and Epilepsy however the vitamin and nutrition deficiencies due to ill health could be related.

Epileptic fits took a lot out of Catherine as well as her ever increasing arthritis, which is an effect of Crohns Disease. Flare ups of her Crohns resulted in more fits as she felt under greater pressure.

So the pattern continued…

I was now 16 and came home one night to find my mum bent over in mortal agony, standing on a kitchen worktop, hanging a washing. I begged her to let me call a doctor but in true Catherine style she said it was nothing and to go to bed, she had work to do. I woke up at 2am with her heading to the hospital in an ambulance.

She had a serious infection due to her bowel bursting. It was serious but she had been in hospital so many times it was natural to everyone. She goes in, she comes out.  This however was different. Air got under the skin and inflated her tiny body and the infection was out of control.

Catherine’s body simply could not cope and at 38 years of age she passed away leaving a loving husband and 2 adoring sons.

Crohns and Colitis is serious. IBD is serious. Together we can make a difference to those who suffer, together we can find a cure.

Together we can make Catherine McEwan and many like her proud……….

Thanks for reading

One Love

Dx

THE FOUNDATION VISITS DOWNING STREET

It’s been a big couple of weeks for the Catherine McEwan Foundation. Both Derek McEwan & our Young Ambassador, Jenny Cook visited Number 10 at the invitation of the Prime Minister, David Cameron.

Derek was kindly invited to the St. Andrews Day reception & Jenny to the turning on of the Christmas lights.

Both met fellow Points of Light winners and were very inspired by the stories that were shared.

Incredibly that was not all, as Jenny was also awarded “The Diana Award”, which is given to young people who change the world for the better.

There is no doubt our Jenny is doing that!

Thanks as always to all the Catherine McEwan Foundation family for your continued support.