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?

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.

AN INTERESTING LOOK AT THE RESEARCH WORK OF MHAIRI MCGOWAN WHO WAS AWARDED THE CATHERINE MCEWAN FOUNDATION FELLOWSHIP

Hello!

I am honoured to have been conducting researching regarding the causation of IBD on behalf of the Catherine McEwan Foundation for the past year or so. The Foundation have enabled such a great opportunity for myself and the others within the Human Nutrition department at the University of Glasgow and the department of paediatric gastroenterology at children’s hospital, who have been extremely dedicated in studying both Crohn’s Disease and Ulcerative Colitis for a number of years. We are thoroughly grateful to be part of such an inspiring charity. I am therefore excited to be able to explain a little bit about the research we do and to ensure you that, because of the hard work and financial input of the Foundation, significant work is ongoing trying to understand these diseases in the hope of developing a treatment or cure.

The majority of research within our IBD research group here in the Glasgow Royal Infirmary and the new Children’s hospital is in studying the human gut microbiota, or put simply; the bugs that live within our tummy.  At first, we may think that having bacteria living inside of us is a bit scary but actually, these tiny little “germs” are extremely important to human health and every single one of us are hosts to of trillions of these bugs. They thrive within our gut, especially within the large bowel, because it provides them with warm, oxygen free surroundings and a plentiful food supply from the diet. In return, these bacteria produce lots of useful substances that help us to stay healthy. These substances, specifically called fatty acids, are used by the cells within our bowel to fight off germs and to keep us healthy. Furthermore, they control irritation (inflammation) within the gut.

However, there is a strong notion that patients with IBD do not have a good relationship with the bacteria within their tummy, causing the irritation (inflammation), Until now, it has been hard to study this area as it is extremely hard to identify the bacteria involved and to understand why they might cause such a reaction. However, recent scientific advancements have allowed researchers to make some forward movement in identifying differences between the bacteria of IBD patients and those who don’t have such diseases. Some studies have found that IBD patients have more harmful species of bacteria within their gut which may cause disease, whilst others report that both Crohn’s and Colitis patients have reduced bacterial variety compared to healthy people. Therefore it may be that patients with IBD do not have enough different good (beneficial) bacteria working to keep our guts healthy.

Part of my research was investigating the differences between the bacteria of IBD patients and healthy people. However, a larger and perhaps more important aspect was looking at ways of changing the bugs so they looked like that of a healthy person. The bacteria within our guts use fibre from our diets as food, and different types of bacteria prefer different sources of fibre. So, depending on what type of food we eat, we can selectively grow different types of bacteria. However we do not know if this is possible in Crohn’s and Colitis patients. We decided to use a special experiment to investigate what happened when we provided the gut bacteria of IBD patients’ with different types of fibre.

We investigated this in the lab rather than within patients themselves.  The system we used in the lab did however mimic the surroundings inside the body so we could get an idea of what would happen in our tummies. This is like an “out of body” bowel.

We looked at if the bacteria make helpful substances in response to the different fibres in Crohn’s Disease patients, and Colitis patients compared to healthy people.   It was found that there was a general trend of reduced helpful substances in those who had IBD. This may help us understand the causes or better ways to treat IBD. It also showed us that those who have already received treatment for their IBD are able to change the healthy substances their bowel’s make but not as much as patients without IBD.

As patients (or relatives of patients) of IBD, I suspect you all have been told by doctors that you may need to change your diet to help IBD. Some of you will have been on Modulen, (a liquid-based diet given to children with Crohn’s Disease). I am sure that most of you who have been on this diet will report that, although you may have missed eating some of your favourite foods, you felt a whole lot better after this treatment. So we already know that diet can influence disease; however this is a complex matter. Fibre is generally thought to be healthy, and as discussed, helps to make helpful compounds in our bowels.

We have now devised a specific diet which, in theory, should have the same effect as Modulen. Alongside his PhD student, Vaios Svolos, and consultant gastroenterologists Dr Richard Hansen, Dr Richard Russell and Dr Dan Gaya. we will be comparing the effects of this diet compared to Modulen in healthy people and in animals. If the results are promising, the team may be able to successfully implement this diet in patients, which would be very exciting indeed.

Throughout my research, I have been continually inspired by the people working around me; the academic researchers, clinicians, IBD nurses and dietitians… It is clear that there is a strong team in Glasgow both on the front line looking after patients, and behind the scenes conducting the all-important IBD research. I feel assured for the patients that I have met that they are in the most capable hands, and I am proud that I have had a small part in this diligent, passionate and exciting group.

The Catherine McEwan Foundation has obviously been invaluable in streamlining the efforts of this group, from funding our research and providing the necessary, top-of the range equipment to our laboratory, to the recruitment of Lisa, the IBD nurse. For a small, local charity to be able to support this is outstanding and is a strong testament to the efforts of Derek, Jenny and all of the team.  I am extremely impressed by the youngsters who front many of the events held by the Foundation- hearing them speak about their experiences with IBD and their involvement in the charity is very humbling. And, despite everything, they do it all with a smile!

I’d like to take a chance to thank all the participants of my study, without whom this research would not be possible. It was great to talk to those who are affected by IBD and really spurred me on with my studies.

On a personal level I cannot thank the Catherine McEwan Foundation enough for allowing me this opportunity. I truly hope that the work we have conducted will help scientists and clinicians understand IBD further.

What a year it’s been! I joined the Crohn’s and Colitis UK team back in May and my time here is getting busier and busier.

I currently work as a Nurse Consultant in Gastroenterology within the NHS and have previously worked as an IBD Nurse. My role at the charity is a Service Development Manager, so my focus is on improving the number of IBD Nurses and the quality of provision. This is a hugely important area of work and, seven months on, we’re making a real impact!

Specialist IBD Nurses make such a big difference to the lives of people affected by Crohn’s Disease and Ulcerative Colitis, which are the two main forms of Inflammatory Bowel Disease (IBD). We know that, across the UK, at least 100,000 people with Crohn’s and Colitis don’t have access to a Specialist IBD Nurse. Not only that, but 63% of IBD services in the UK don’t have enough Specialist Nurses to meet the needs of everyone affected. This has got to change, and I’m so excited to be a part of making this change happen.

World IBD Day – e-action

The very generous funding from the Catherine McEwan Foundation has meant that Crohn’s and Colitis UK could launch a campaign for more IBD Nurses on World IBD Day (19 May). The ‘More IBD Nurses – Better Care’ campaign was my first project, and it’s been a real success.

If you haven’t already been a part of this, where have you been?! Crohn’s and Colitis UK’s supporters joined force to campaign for more IBD Nurses by sending an e-letter to the CEO of their local hospital or hospital trust. An incredible 1,300 emails were sent!

I was overwhelmed by the response, and the campaign has raised fantastic awareness. This has allowed me to start conversations in more than 20 Trusts about the IBD nursing service and its development. Five Trusts have reviewed or resubmitted business cases for IBD nursing roles as a result, and two Trusts have secured funding for posts. A further Four Trusts have accessed support from Crohn’s and Colitis UK to discuss the IBD nursing service and plan its development, which is such great news!

It’s been a really worthwhile action and shows how harnessing patient power can make such a difference. We had some brilliant quotes from patients too:

“My IBD Nurse was amazing when I was an in-patient and I would never have made it through the hardest time of my life without him!”

“When I was at my lowest, she was able to provide sensible advice and help lift my mood with her wise words. I’m not sure what would have happened to me if this service hadn’t have been there. Please, please, please never underestimate the value of IBD Nurses.”

But patients also highlighted the real need for more IBD Nurses:

“I would like to say that the support received from the current IBD Nurses is excellent given the restrictions on their time, so often I have received calls long after their normal hours of work. We really do need extra nurses.”

“Please ensure that increased funding is found NOW for our IBD Nurse to be available at least five days a week rather than the three days at present. She is an invaluable asset to the hospital, and the extra cost would be offset by the reduced use of consultants’ time in answering and dealing with patient concerns.”

The campaign is still ongoing and, if you haven’t already done so, please support it here.

The National Audit for IBD Nurses

This email campaign hasn’t been my only project though – like I said, it’s been busier and busier! I’ve also been working on a nursing audit. Two surveys have been sent out and completed by IBD Nurse Specialists, and they’ve given us a really good national overview of the services as we work to increase numbers. I’m grateful to everyone who took the time to complete them – I think my ongoing email reminders must have helped!

The audit is now complete and we have our own National IBD Nurse database (with help from the Royal College of Nursing). We have data from all 157 hospital trust services across the UK and it’s enabled us to identify where there is a gap in provision of IBD nurses.

The success over the past seven months is thanks to every single individual who joined the IBD Nurses Campaign, and together we can continue to make a huge difference and get better care for all of those living with Crohn’s and Colitis. I’m delighted with what we’ve achieved so far, and am excited for what 2017 will bring. Happy New Year!