A BIT ABOUT ME

Hi everyone, my name is Hazel Duncan and I am the newly appointed research dietitian working within the gastro team and based at the clinical research facility at the Queen Elizabeth University Hospital.  I have been based within the gastro team at the Royal Hospital for Children/Yorkhill for the last 5 years.  Throughout my clinical role I have lots of experience of working with families and young people with IBD and I am looking forward to putting all the information I have learnt over the last 5 years to use in a research setting and developing new treatments that we hope will help children with IBD.

A LITTLE BIT ABOUT THE RESEARCH I HAVE DONE SO FAR

In 2013 I carried out a study supported by the Catherine McEwan Foundation looking at the role of dietary supplements in keeping children with Crohn’s disease well after a course of liquid diet.  This was published in BMC gastroenterology so other teams looking after children with IBD could learn from our experience. At the time of publication there was little research into this area but interest in this area has been sparked by this and work by others.

More recently I have looked at the experience of patients with Crohn’s disease who have long term feeding tubes (PEGs) inserted.  This work also supported by the Catherine McEwan Foundation demonstrated that the feeding tubes had a positive impact on both growth and weight of the children. This work is currently submitted for publication.

PLANS FOR THE FUTURE

My new role as a research dietitian, along with other members of the team, will be to look at a special diet which will be used on patients with Crohn’s disease to make them better. Currently we use a liquid diet for this but we plan to create a diet using solid food that will hopefully work in the same way.  There has already been preliminary research on healthy adults on this and we are keen to see whether it will help children and young people with Crohn’s Disease too.  Hopefully we will be able to tell you more about this soon.

All of this research could not be possible without the support of The Catherine McEwan Foundation

I’m Katie Leigh and I am 11 years old.  I was diagnosed with IBDU in February 2014 when I was only 8 years old.  Up until about a year before this, I was a happy, healthy child who had just started to learn to play the fiddle with a local music group, enjoyed netball, athletics and was in Primary 3 and enjoying school.

My family started noticing I was getting really pale and not eating as much as I used to and I was getting tired much more easily and more often, truth was, I was getting lots of sore tummies and was having to run to the toilet every time I ate something, just before diagnosis I was going to the toilet about 20 times per day.

My mum had me back and forth to the GP.  They thought at first I was maybe Lactose intolerant so I had to change and monitor my diet, then they thought I may have been celiac, so I had to get bloods done which I hated, then they lost my bloods so I had to get them done again.  It was terrible!  One night my mum walked in on me to see if I was ok while I was in the toilet, there were lots and lots of blood in the pan and I was scared.  My mum took me to the local hospital and was then sent to Wishaw hospital where I met Dr Delahante for the first time.  I had to give the nurses a poo sample every time I went to the toilet, and there were lots.  Dr Delahante was pretty sure I had an Inflammatory Bowel Disease, something me or my family had never heard of but the only way to know for sure was to get scopes done.  I was discharged after a couple of days with plans for me to go to Yorkhill Hospital to get the scopes done.  I hated the bowel prep, it was disgusting and it made me sick, luckily I had kept enough down for it to clear my bowel out.  I woke up after the anaesthetic really confused, there were monitors and drips and I didn’t know what they were for. Then my life changed forever.

My mum came in to recovery to meet me, I could see she was a bit upset.  When we got back to my room the Doctor came to see us and told us that I had lost a lot of blood and was getting a blood transfusion and that part of my bowel was so badly inflamed that he couldn’t get the camera all the way through because my bowel would have ruptured but he confirmed that I did have an Inflammatory Bowel Disease and hearing the words “No Cure” terrified me.

I thought that I was only going in for an overnight stay but I spent the next week and a half in hospital, which felt like forever.   I was started on steroids and azathioprine and I was told that I would need to get the scopes done again in a few weeks once the steroids had started to make my bowel a bit better.

I was off school for a few weeks more, I was very tired and my teacher sent me homework home so I could keep up with the children in my class.  One day I got a card through my door from my teacher and class mates, it was a get well soon card.  Did it really come this far that my class was sending me get well cards home?  I remember the day I visited the school to explain my illness to my head teacher and I took a visit to my classroom, all my friends were crying and didn’t really understand what I was going through.

I started off on azathiprine, which only kept me well for a couple of months before having another flare, so I was put onto Methatrexate injections which I had to do every week. I hated this because the side effect made me sick and I felt sick for 2 days, Saturday and Sunday which meant I spent my full weekend in bed, but it kept me well for a year and a half until March this year were I developed Arthritis in my hip which was torture because I was very athletic and couldn’t do all the sports that I loved doing.  I couldn’t do PE, netball, cross country, athletics or go to the boxing club.

I have been for many more scopes, the latest being on my birthday this year, regular blood tests, which don’t scare me anymore and many, many more hospital stays.  I am now treated with Infliximab infusions every 8 weeks and back taking azathioprine every day, and so far (touch wood!) is keeping me well.  My inflammation markers are at the lowest that they have been since I was diagnosed and are hopefully continuing to fall and eventually I am well enough to be in remission.

I have a new found determination to raise funds and awareness for Crohns & Colitis and our first fundraiser in August this year we raised £6300.  We hope to smash that next year!

MY JOURNEY

I’m Reece. I am sixteen years old.

When I was ten years old I was a happy and healthy child, I did all the things a ten year old boy would do.

I went out with friends on bikes, played football but my favourite hobby was Tae Kwon Do.

I was one belt away from being a black belt, I fought all over Britain and won lots of medals.I loved it and trained three days a week. That was my whole life and I loved it!

Then my life changed forever.

My mum noticed I was getting really tired all the time and she took me to see my GP who said I was growing and that’s why I was tired and not to worry.

I was getting more and more tired and looked really pale.

I was referred to Yorkhill Hospital and seen by Mr Walker who knew right away what was going on as my mouth was all split in the corners.

I was taken to Yorkhill and went to theatre for biopsies.

Two weeks later we were phoned to come in and that’s when we were given the news that I had Crohn’s disease tracking from my mouth to my bottom.

The first few months after that was ok, not too much pain but I was always tired, doing less each day.

I was started on Azathioprine tablets everyday but they didn’t help much.

I was struggling to go out and see my friends, I was so tired and in pain most of the time.

I went out one day to play football, I wasn’t too well but I wanted to try, all I remember was being on the pitch and then I collapsed.

I was taken to Yorkhill to find out I had an obstruction in my intestine and had to go to straight to theatre, after that day with more tests we were told my Crohn’s was very aggressive all over my body.  It was really bad.

I was started on Infliximab infusions at first they helped a bit.

I had no life by then. I had been really ill for about a year, always tired and in pain.

I was in and out of hospital all the time, I couldn’t go to school anymore I was getting home tutored.

I knew my life was over I had to give up my Ta Kwon Do which I loved so much.  I had to also give up football I was devastated.

I was so down and low in mood.  WHY ME!

I was always a good person.

So I saved up some of my medication and was going to take it all at once.

Then I thought about my mum, dad, my wee sister and the rest of my family.

I thought for a while I have to keep fighting this horrific disease. I can’t give up now!

I was getting double infusions and after a few months I was told I was getting worse and the infusions were not working.

We were all devastated to say the least.

Everyone was so upset more bad news.

The doctors weren’t sure what was next for me with reference to treatments.

I had been in and out of theatre so many times and was spending more time in hospital than at home.

I had no life.

Then one morning my mum came in to get me up from bed, I couldn’t feel my legs and I couldn’t move.  I was taken into Yorkhill for more tests and we were given the devastating news that my spine had collapsed and was fractured in a few different places.

I will never forget that day I cried so much.

I thought I would never walk again.

The doctors had a meeting with us and told us that not only did the double infusions not help my crohns they had given me soft bones which meant they break easily.

I was in a wheelchair for months and was so ill I was getting fed through a tube and needed everything done for me.

It’s so degrading.

I was also diagnosed with peripheral neuropathy in my hands and feet with all the drugs I had been taking.

I had become very ill and none of the treatments were working and they discovered my bone marrow wasn’t working properly with all the treatments.

It had become very dangerous.

I remember sitting in my hospital bed thinking when will this end.

I can’t do anything anymore, I have no life and I am getting worse and none of the treatments are working. OMG what can I do now is this the end?

I have never felt so scared in my life and upset.

I was devastated at this, then we had a meeting with all the doctors, and the next step was a reconstruction and ileostomy.

I was devasted with the news I wanted to die, but I know that is selfish.

Now was the time for me to get prepared for this surgery, I have had lots of surgery but this one was bigger.

So I had to get strong enough.

I went for surgery at 8am and I was told I would be in for 8 hours, everything was going well till near the end and then they cut my artery going into my heart. I started to lose a lot of blood it was touch and go but being the tough cookie I am I got through it thankfully.

Since my surgery I have felt much better, but I still have soft bones and can’t walk far. I have peripheral neuropathy in my hands and feet so there are a lot of things I can’t do.

I need to keep fighting this horrific disease and make the most of what I can do with life.

My whole life has changed drastically but i need to keep looking at the positives and never give up. I know my life will never go back to how it was before I was ill, but I need to keep looking at the positives every day and never give up.

One day there will be a cure for this horrific disease.

We are excited to announce news about how further funding from the Catherine McEwan Foundation is being planned to continue support for the research ongoing in Glasgow. The posts previously supported by funding are Lisa Richmond, IBD research nurse and Mhairi McGowan, who was awarded the first Catherine McEwan fellowship. There will be upcoming blogs from both Lisa and Mhairi to let you know in more detail exactly what they have been up to.

We are now planning the appointment of BOTH a research dietician and a Second Catherine McEwan fellowship to support the ongoing work we are doing on dietary treatments of IBD. We have now successfully completed our work with our new “CD treat” diet in healthy volunteers. When these new team members are on board the next stage will be then giving the “CD treat” diet to a small group of children and adults with Crohn’s disease. This is an exciting and big step forward for the team. We will of course let you know once these appointments have been made.

Thank you as always to everyone for their continued ongoing support. Our work would not be possible without you.

Hi everyone

So – The Catherine McEwan Foundation emailed me and asked me to do a blog for the website. I, of course immediately agreed because he is an all round good guy and does loads for us and our IBD patients. It then occurred to me that I have never done anything like this before and I wasn’t really sure where to start.

At times like this I usually do one of 2 things:

1) Procrastinate (I have done this for about 2 weeks now)
2) Take a deep breath, dive in and see where it takes me (I’m doing this now)

So – here goes……

I have been an IBD Nurse specialist for 10 years. It’s a great (but hugely busy) job. No 2 days are the same; no 2 patients and families are the same. I’m really lucky to work with a great team at the Children’s Hospital in Glasgow (prev Yorkhill) – our aim is always to deliver the best for our patients. Now– sometimes that’s REALLY difficult – there just are not enough hours in the day – but we do our best because our patients deserve it. That’s the bottom line (pardon the pun!). Cheesy as that may sound, it is true.

Even after all of these years in nursing, the strength of the human spirit never ceases to amaze me. I have seen it many times in my 28yr nursing career, but I can honestly say on a day to day basis, never more than in my job as an IBD nurse. Derek foolishly told me I could talk about whatever I wanted to (he’ll soon regret that…) – so – here is what I’ve learned from my patients and families mixed in with some ‘top tips’ for managing your (or a loved one’s) IBD.

Managing IBD – what I know…….

Don’t give up – there will be days where you feel rubbish. That is the way IBD is. It’s unfair, unpredictable and unexpected, but there is nothing you can do about that. What you can do though, is foster a positive attitude towards it. Every day I see our young people with IBD cope with more than many adults will ever have to think about for the entirety of their lives. I have seen some of my patients have IV steroids in the morning, go into school to sit highers and come back into hospital in the evening for their 2nd dose of IV steroids. That is all down to a positive mental attitude, drive and determination. From what I see on a daily basis, it makes a considerable difference to how our patients cope with this upredictable condition.

Talk to people – friends, us (healthcare professionals), each other. If there is anything I have learned from doing this job for so long it’s that sharing experiences is ALWAYS cathartic. You’ll learn that you are not the ‘only one’. I remember doing a family day in the Science Centre a few years ago and I asked the audience to put their hand up if they’d had Modulen (a nutritional therapy we use a lot in kids). One by one the hands went up around the room. I told them all to keep their hands up and take a look around. That was a great moment – you could see everyone’s face change as they realised that other people had had the same experience as them. Loads of the kids spoke to me about that afterwards……

Ask questions – it’s important. Doctors and nurses are great and have loads of knowledge, but no-one knows how you feel better than you. From our perspective, it’s much better if we have a patient (or family) who are engaged in the consultation and can help guide us in advising what will work best for them as a person or family. We call it ‘tailoring therapy’ and it really works. Everyone leaves the consultation feeling like they have a positive outcome. We are here to help but it’s made so much more difficult if we don’t know what’s important to you.

Don’t panic – IBD is unpredictable, that is the nature of the condition. Flares or even just a temporary increase in symptoms can cause significant anxiety for a lot of our young people. It’s hard, we understand that, but if you are majorly stressed by every upset stomach or visit to the loo, you will have a difficult journey with this condition. Psychology, hypnotherapy and more recently experience with mindfulness techniques have been shown to be helpful in dealing with the unpredictability and chronicity of some symptoms. Ask for help with this – you GP or IBD team can point you in the right direction.

Don’t let IBD ‘drive the bus’ – take control. Do what you can to manage your IBD – take your meds, get your bloods checked, take it easy when you need to, come to your appointments, get enough sleep, eat well, exercise regularly. We are all about managing IBD proactively, we don’t like to wait until our young people are flaring – we have a really limited choice of therapies when that happens. Contact your IBD nurses or medics if you have increased symptoms for 3 days or more.

Samples – no one – and I mean NO ONE – likes giving us poo samples but they are so important. We have new and very sensitive tests now that can tell us when things are more active in the gut – even before there are any symptoms. This means we can now make changes before our young people become unwell.

We spend a lot of time chasing people for poo samples…… 🙁

Go to school/work – this sounds obvious, but from experience I see a lot of young people ‘opt out’ of school instead of ‘opting in’. This means they struggle to develop and maintain friendships and aren’t able to tap into the hugely helpful peer support they would get at school. Of course exams and achieving academic potential is also vitally important. We have many young people who get to uni – there is no reason why IBD should stop that happening.

Get involved – if you’re reading this you’re obviously already motivated to seek out information and make contact with people who have or care for someone with IBD. There is loads – and I mean LOADS of research going on in IBD. We are looking at genes, diet, gut microbiota (the bugs that live in the gut) and how we can make the most of the medicines we have in our armoury now. The Catherine McEwan Foundation has been absolutely instrumental in allowing us to be part of these large studies and design our own studies too.

It helps if you feel you are making a difference – I know this from experience because I am lucky enough to have patients who tell me I have made a difference – every day. Become a fund raiser – take part in the Catherine McEwan Foundation’s mad challenges, ‘It’s a Knock Out’, Santa bungees….. or have the time of your life at the Red Hot Ball, Tea Jenny or Comedy Crohnies.

Finally – let your IBD team know what you want. We are constantly striving to improve our service but we need your support to help us drive this forward – nothing is more powerful than the patient voice. Biased as I am, my request would be to ask for more IBD nurses as a starter for ten…… The Children’s hospital is lucky enough to have 2 and an half IBD nurses, but we still struggle to give our young people and families the support we feel they need. There is much more we would like to do

– Set up support groups for our young people
– Set up support groups for our parents
– Set up a patient panel
– Arrange more family days
– Arrange Transition evenings
– Set up a specific clinic for young people age 16 – 24yrs

That is only a few things – we have more, but Derek will have a heart attack if I don’t stop writing soon. So – I’m going to abuse this blog slightly and put a request out for anyone who wants to help in getting more IBD nurses into post to access the link below for the Crohn’s and Colitis UK –‘More IBD Nurses – Better Care’ campaign. The link is on the main web page….

www.crohnsandcolitis.org.uk
Thanks a lot!
Vikki

My name is Erin Stuart and I’ve just turned 10 I was diagnosed with Crohns in Sept 2014 age 8 the Crohns was affecting the join at my small and large bowel. I had been unwell for 18 months with terrible pains in my tummy and everyone thought I was getting every bug going. I’d had to give up football and highland dancing as I just couldn’t manage it and was so grumpy when I did I was just about managing school every other day.

I didn’t understand my illness to begin with and still struggle a bit to now but my IBD nurses and doctors along with my Mum, Dad, two brothers and wee sister along with my extended family & friends were/are great. When I’m not feeling to good my mum just says is it the pain and I say yes.  In 2014 after my colonoscopy and endoscopy I was told I would go on a liquid diet called modulen for 8 weeks and not eat anything.  I drank the modulen with crusha ( i will never ever drink crusha again) during that time I also started taking a drug called Mercaptopurine which is the liquid form of Azathioprine ( my mum kept me right there) but just at the end of the 8 weeks in time for advent calendars and eating  I was very poorly with my crohns and had to be admitted to Yorkhill as the modulen hadn’t worked. I’d lost even more weight and couldn’t stop being sick, I ended up on steroids for the next few months, only good thing was I could start eating again, I also had an MRI & a bone density scan but I was still flaring.

In July 2015 I was readmitted to the new children’s hospital and had another colonoscopy and endoscopy the doctors found my Crohns was affecting more of my large bowel and changed my treatment I had to learn how to inject myself once a week with a drug called methotrexate which I hate doing and it makes me feel sick but at the moment it’s keeping me well and I am back playing football with Port Glasgow Juniors Community Sports Club and I have just started athletics thou I haven’t managed dancing yet I am hopeful that I’ll get back to that soon.

My football team & coaches have been fantastic and are helping me raise awareness of this lifelong chronic disease we recently climbed Ben Nevis in aid of the Catherine McEwan Foundation and I managed to do it too. Without Crohns I wouldn’t have met some wonderful people including Derek & Julie McEwan and can’t thank them enough for all they do and also for asking me to write about my journey so far with IBD. Here’s to staying well.

Erin x

My name is Robbie Wilson Trevett, I am 14 years of age.  I was diagnosed with Crohn’s Disease in July, 2013.

In January, 2013, before diagnosis I became very unwell, had no energy, didn’t want to go out with friends or play football anymore, stopped eating and was in a lot of pain and at the age of 11 dropped to 4 stone, swollen joints couldn’t walk, constant trips to the bathroom, mouth ulcers and doubled in pain.  After having blood tests, colonoscopy/endescopy, MRI scan, barium meal scan and bone scan I was diagnosed with Crohn’s it was inflamed and ulcerated in my small and large bowel and stomach.

While in hospital when I was diagnosed I woke up after my colonoscopy and endescopy with a naso-gastric feeding tube in my nose down my throat and told what was wrong with me and that I was not allowed to eat or drink anything but water for 8 weeks I was going to be tube and pump fed a liquid diet called Modulen.

These 8 weeks were the hardest thing ever and it was especially hard when I had to start 1^st year at High School with it in and sit with a bottle of Modulen pouring it in a bolus all summer whilst my friends were having McDonalds. My friends were supportive though and even learned how to help me test the tube before each feed and pour my modulen in for me.  I felt a little healthier after this 8 weeks and went on tablets called Azathioprine.

This did not last long when my Crohns flared up worse than ever two months later in November 2011. I immediately got another stay in Yorkhill and was put on Steroids for a few months. The only good thing about them was I was eating all the time for a change and put on lots of weight.After my Steroids to make my Crohn’s settle down I had to learn how to inject myself with a treatment called Methotrexate.  This kept me well for a while until just before summer holidays in 2012 when I flared up again and told I was having to get the Naso-gastric tube in for another 8 weeks. I was upset another summer not being allowed to eat or drink and had to cancel our summer holidays but my mum promised as soon as the modulen was finished we would rebook somewhere else.

In October she surprised me and my brother that we were going to stay with my grampa in Los Angeles for three weeks. Three days before going I got unwell and had to go on holiday on Steroids again but at least we got to go this time.

All seemed ok for another few months until I had another massive flare-up. After another stay in Yorkhill I got the cameras done again and they discovered that my Crohn’s had become more active and more aggressive. More bad news!!!  I had to stay on the Methotrexate Injections which were making me violently sick as I was on them for so long. It was every Wednesday night injection night and I knew what was ahead of me that night. I hated it with a passion but told I was also going to have to go into hospital every 6 weeks for Infliximab Infusions for another treatment, this was given through a cannula.

These Infusions did make me feel better than I had for over two years since diagnosis but the downside was they left me with no Immune System so was picking up every infection possible.  You can’t win!!!

After being on Infusions for almost 10 months they just stopped working anymore.  Once again Crohn’s flared up but this time I also had a stricture which was a blockage in my bowel. This was life threatening if it blocked altogether and in November, 2015 I had to receive my first surgery. I had a bowel resection, some of my large and small bowel removed that had the active Crohns and the part that was narrow.

Now, 4 months after surgery I am still recovering, I just hope that when fully recovered I am going to have a better life than I have since I was diagnosed and cannot wait to get back to my favourite sport playing football with Hampden Boys Club with my Hampden strip on which I designed for the team.

It is hard living with this chronic incurable disease, the fatigue, the pain, urgency for toilet, joint pains, skin rash, low iron, mouth ulcers, sickness, and no appetite on top of side effects from medication.  I hate this disease but I just have to get on with it and fundraising also helps.  I have met some great people through having IBD.  I have a lot of support from my mum and brother, family, friends, Derek McEwan and the Catherine McEwan Foundation, and my doctors and nurses at Yorkhill Hospital, don’t know where I would be without them all.  I would like to thank Derek for asking me to share my story so far with you all as it is important that we raise as much awareness as possible.  I am looking forward to the 5^th March for the Red Hot Ball and helping to raise as much money as possible.

Robbie x

The last month has been super busy! I was in London to cheer on my dad, Derek and Dean at the London Marathon which was one of their warm up events for the big Arch2Arc challenge! This was really fun and I am so proud of the 3 of them.

Once we got back from London, it was the Young Scot Awards! Winning the health award and Young Scot of the Year was really unexpected! I had a brilliant night & I loved hearing the finalist’s stories and getting to meet some of them.  The next day I was at another awards ceremony for an achievement award my school nominated me for! These awards really help to raise awareness of my charities and IBD which is the most important thing.

My recent blood results showed that I’m low on iron and I’m on tablets for 3 months. Being fatigued all the time is quite of a struggle but I’ve still managed to make school and keeping myself busy. The tablets have been giving me a sore tummy but I’m just looking forward to getting my energy back!

As you may know, May is IBD Awareness Month and I have lots of stuff throughout the month planned. I am selling purple candles, after a meeting with the lovely Aileen and Lorraine they were very kindly donated by IKEA Glasgow. My local church is lighting up purple again all next week and on World IBD Day Thursday 19th May my school year group are replicating the Arch 2 Arc challenge, I am also talking at the Stewartfield Farm my local pub that night and I have Morgan Stanley and Morrisons in Stewartfield having a dress down day for me!

I am also now friends with a girl called Amelia who also has Ulcerative Colitis and has just recently had her large bowel removed too. She is doing really well and she is speaking about her story at Tea Jenny this year! She was at my house yesterday helping making up some purple candles!

Thank you as always for all of your support, I really appreciate everyone who helps me with my fundraising and awareness. It means so much to me.

Jenny x