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

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

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