Robbie’s Story

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 1st 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 5th March for the Red Hot Ball and helping to raise as much money as possible.

Robbie x