Symptoms at Diagnosis:Constipation, fatigue, underweight, loss of appetite
Details of Surgery:None
I first started having symptoms one year prior to my diagnosis. I started to feel really tired, struggling to eat and became constipated. I would often sweat a lot at night and I lost a lot of weight. The doctor just treated me for constipation for a year, giving me laxatives and told me to eat more fibre (which I already was eating sufficient amounts). During that year, my symptoms got worse, and a young doctor decided it was time that I was referred to the main hospital.
“..at 14-years-old, I didn’t have a clue what Crohn’s disease was, neither did my parents.”
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Once I had my first meeting with the consultant he said straight away “I’m 90% sure it's Crohn’s disease”. Whilst that did put me at ease, at 14-years-old, I didn’t have a clue what Crohn’s disease was, neither did my parents. The consultant booked me in for a colonoscopy, endoscopy, barium meal and MRI.
Having none of these tests done before I was definitely a little scared but I was that unwell, I knew I needed to just get on with it. The preparation for the examinations wasn’t very pleasant at all. The drinks they give you to empty your bowels are revolting and I remember throwing up the drink for one of my examinations. I really struggled with the drink for the barium meal too.
I had a general anaesthetic for my colonoscopy and endoscopy. This was definitely a weird experience being put to sleep. After I woke up the doctor came by and shared the results that I definitely had Crohn’s disease.
“I had mixed emotions upon hearing the diagnosis.”
I had mixed emotions upon hearing the diagnosis. I was happy that I did actually have a reason for my symptoms, after one year of GP’s telling me I just needed to eat more fibre. I was still unsure what Crohn’s disease was and what implications it had, so in my naivete I wasn’t too worried when hearing the news.
After the preparation for the examinations of not eating and emptying my bowels, when I came round from the anaesthetic, I was starving hungry. I was so looking forward to eating again and now I had my diagnosis and can just take some medicine and I will be fine again … so I thought. I met with the dietician who told me I had that evening to eat what I wanted and that would be it, because starting from tomorrow morning I would be on a liquid diet of specially formulated milkshakes for nine weeks. That meant no solid foods and only those milkshakes. As you can imagine I was gutted! I loved my food and to be told that was actually really difficult for me to accept. I knew I needed to do it so I just had to take it in my stride and get on with it.
Being at school around everyone eating nice things and there I was sat with my milkshake. That was really tough but I just had to laugh it off and not try and hide it. After the milkshakes, the inflammation hadn’t reduced enough, so the doctor put me on steroids (prednisolone) for eight weeks. Apart from having a balloon face I didn’t mind being on these as I didn’t have any other side effects. The steroids worked and I was feeling really good.
Because of my Crohn’s disease my growth was stunted and I was behind about one and a half years for my development. This brought a few challenges as I was one of the smallest kids in school and was late to start puberty. I was very fortunate I was good at sports, so I naturally ended up being with popular people at school which helped me to not be bullied for it.
After the steroids I started on azathioprine. I stayed on these for four years and they helped me to live a normal life, I had no inflammatory bowel disease (IBD) symptoms and life was great. It enabled me to enjoy my teenage years and do the normal things 18/19-year-olds do (drink alcohol and party!). Because I was doing so well, I came off azathioprine and stayed in remission for four years.
I had an acute flare following four years of remission and a course of steroids was provided to nip it in the bud. I then had another year of being in remission. I’ve been in and out of remission the past few years, with a couple of times needing the steroids again to control the flare.
I’d say IBD hasn’t affected my life too much because I haven’t let it stop me doing things. I’ve always done what I’ve wanted to do, including travelling to Asia and visiting 14 countries in 12 months. After travelling I set up my martial arts school business and have since gone on to set up a mindset coaching business. It has affected me in that I often have to rush to the toilet and deal with stomach cramps and fatigue. These things I kind of just put up with though when they come along. I don’t see IBD affecting my life, more so it’s just a part of my life that I accept and get on with.
Running businesses is definitely stressful and that is certainly my kryptonite when it comes to going into a flare. I try to manage my stress with exercise, meditation and cold showers.
My tips for people living with IBD is to do your own research about the disease and don’t be afraid to question the doctors. I don’t rely wholly on medication or see that as the only option to living with IBD. I look after my body by exercising, eating healthily, meditating, and making sure my mindset is focused on not letting IBD stop me from living my life. It’s easy to slip into the victim mindset but I’ve found that just makes my symptoms worse.
“I’ve found there is strength in showing your vulnerable side and I want to help others who may be going through similar experiences."
One thing I haven’t done in the past is talk about my Crohn’s disease or how I’m feeling. I’ve always put on a brave face but actually I’ve found there is strength in showing your vulnerable side and I want to help others who may be going through similar experiences. That’s why I set up my coaching business to help with people’s mindset and also to share my Crohn’s disease journey with people who may not fully understand it as well as show support for people living with IBD. My Instagram handle is @clarkcoaching_.
I'm Jordan. I was diagnosed with Crohn's disease (ileocolitis) when I was 14-years-old. My symptoms were constipation, fatigue, being underweight and loss of appetite. I've travelled to Asia and visited14 countries in 12 months. After travelling I set up my martial arts school business and have since gone on to set up a mindset coaching business.