At the age of 16, everyone thinks that they are invincible when they are that young. It was probably weeks maybe even months before I actually plucked up the courage to tell my parents about it, as you would have guessed I was very embarrassed, I hadn't even said anything to my closest friends but the pain was becoming quite unbearable and it just wasn't going away. I knew I had to do something.
The doctors were originally very vague in telling me what was actually wrong with me and couldn't actually give me a definite answer on any of the questions I had, which I would later find out was one of the major factors in why it would get so severe. Had they been able to diagnose it sooner I don't believe my condition would have got as bad as it did.
After making numerous visits to my GP they came to the conclusion that it was an ingrowing hair which had caused an infection. Boy, could they be any more wrong? As you can imagine stress levels were high. At this period in my life I was in the middle of my GCSE's and I would later find out that one of the main triggers of Crohn's is stress. Things were getting worse and I still did not know why. Coming away from the doctors surgery very unhappy and dissatisfied with their diagnosis me and my parents discussed that the only other option would be to make an appointment at the Gastroenterology department in Hereford Hospital as the pain was starting to get rapidly a lot more difficult to deal with.
It was soon after this that eating was starting to become a real issue for me as I just stopped. I couldn't even explain why I just felt full all the time and couldn't even stomach my mums Sunday dinners which showed just how serious the problem was who can refuse their own mums Sunday dinners! It was at this point that my closest friends at school were starting to see a real change in my character as well as my physical appearance, as most people know I've always been quite a stocky lad and my weight was dropping at an alarming rate down to nearly under 9 stone. This was increasingly frustrating for me as I wanted to let my friends and classmates know what was happening but I didn't even know myself. But I was about to find out.
Of course I was extremely nervous on the morning of my hospital appointment what young lad wouldn't be? But I was in such pain that I just wanted a resolution to the problem. The consultant examined me and deemed everything okay for a small routine operation to remove some infected skin which I was told would be the end of my problem. It was only then that I happened to mention that the pain was coming from a different area also (a smaller lump that had appeared) . On re examination the consultant then looked at both me and my mum and told us he had made a mistake. We looked at each other directly in the eyes thinking exactly the same thing, Cancer. To my relief he immediately quashed this fear but he did diagnose a serious chronic condition that we knew nothing about. This was the first time I had ever heard of Crohn's Disease.
The operation still went ahead but they decided to use a camera to try and investigate the extent of the inflammation. I would later find out that this was inconclusive and they didn't actually find out anything they didn't already know. Things accelerated so rapidly after this as what I didn't know was an abscess was forming. At this point I was only really attending school to sit my actual GCSE's and I would like to thank Fairfield High School for the understanding they showed allowing me to take comfy cushions into my exams as well as jelly babies and other sweets to keep my energy levels high as the extreme fatigue caused by the condition was something I had never experienced before. In the days after the exams things really started to take a turn for the worse as the abscess was about to burst. The pain at this point was so severe that I remember saying to my mum I wanted to punch a brick wall so hard that at least it would change the focus of pain even for a couple of seconds. I was so angry with it I couldn't think or do anything else. I was admitted to hospital immediately and put straight onto morphine to try and control the pain and after a few days an operation was finally carried out. It wasn't until I had awaken from the surgery that I knew the extent of what was needed to relieve my symptoms.
The operation left me with an open wound that would require packing and dressing every
Due to the inflammation in my bowel, an abnormal passageway had been caused. This was otherwise known as an anal fistula. This is essentially a small channel that develops between the end of the bowel, known as the anal canal or back passage and the skin near the anus, where obviously waste leaves the body. My problem was that the fistula was branching out into more than one channel. There was only one way to stop this and this was to insert a number of small drains into the passageways to help divert the waste and stop the build up. This would prevent another possible abscess.
These drains were to stay with me for around 9 months and I have never told anyone this but I had to use pads walking around to collect any lets say..unexpected gifts. Having placed me on steroids the combination of them and the drains, finally got the condition under some control. This was never a permanent situation and whenever they tried to reduce the dosage of steroids, I would see myself falling ill again. This would happen over and over for a good 12-18 months. There was no real way to get the Crohn's under control. At my worst I was taking almost 100 different tablets a week.
The most frustrating thing for me and my family was just nothing worked. Any time there was a bit of hope the Crohn's would flare up again. I tried to live as normal a life as possible. At this point, I was enrolled in Hereford Sixth Form College and was trying to get on with my education, but obviously I was incredibly embarrassed by my condition and only a select few of my closest friends knew what I was dealing with right through Sixth Form. They know who they are, and I thank them. Eventually after 3 years of unsuccessful treatment, I was trialled on a brand new, very expensive drug called Infliximab.
Since August 2010, I have been regularly attending the hospital every 8 weeks. I have this drug administered through an intravenous drip. This combined with a daily drug called Azathioprine and regular blood tests has allowed me to steadily gain weight again, eat what I like and generally stay fairly healthy. I still suffer from the fatigue and some other minor issues but at least for the moment my quality of life has much improved. I have been told that the Infliximab is incredibly strong and nobody knows the real long-time side effects, so it is not an option to stay on this permanently. I really don't know what the future holds for my disease, and I hope that when I am no longer able to take this drug that there is something new for me take instead as I do not want to go back to the way I was almost 6 years ago. Although this could happen, I just try not to think about it. Despite the severity of this condition, and I admit at times it has got me really down and quite depressed. I try to be as positive about it as possible.
It hasn't stopped me in life as I am in the last few months of a business and management degree at Cardiff Metropolitan University, something I could never see myself doing a few years ago. It goes without saying I appreciate the support and understanding of my parents and friends about my condition but I would like to say a huge thank you to my sister Katie as she has written a few pieces as well as a radio appeal on Crohn's Disease and is extremely understanding and supportive of my condition.
Crohn's disease is a very debilitating and embarrassing disease to live with. I have never spoken about what I have gone through before as to be honest, I never really knew the true meaning and just tried to ignore it. As there is currently no cure for the disease, I am purely writing this to help raise awareness in the hope that there can one day be a cure to stop people going through what I have and what the thousands of other people in the UK are going through- many who have had it a lot worse than me.
Thanks for reading,
Joey
You can follow Joey's story at his blog: My Crohn's Disease
