I just wanted to share my story with you and anyone who would be interested to not only raise awareness, but to show that people can get through the worst of things and there is always a positive side to things.
On the outside, I am a normal looking 25 year old male working as a mining engineer in Central Queensland. On the inside, I am full of fantastic but also worrying surprises. I have three major illnesses/diseases having being diagnosed as a teenager. At the age of 14, I was diagnosed with Ulcerative Colitis. At the age of 17, I was diagnosed with Linear IgA dermatitis and Brugada Syndrome.
I will break down the story of my three conditions individually, focusing on the bowel related ones of course (Ulcerative Colitis and IgA linear dermatitis). For my story, it is more of recognising what can happen to the human body on the inside, even if you look normal on the outside no matter what your age or lifestyle/fitness condition.
I started to write the below and realised that it is a lot of information, but I feel like it is necessary to understand my experience.
When I was in the start of high school in Gladstone in Central Queensland, I started to experience severe cramping in my stomach. Being young, I thought I had just eaten something bad and would get over it in time. Over the course of several months, my stomach cramps became worse and more frequent. It wasn't until I started to pass blood in my stool that I would tell my parents that something was wrong. My mum is an occupational health nurse who has worked in hospitals and industries for decades. I didn't just go to her about my symptoms because she's a nurse, I went to her because she's my mum and they always know best. When I told her of my symptoms, she booked me into my local GP.
A few days later when I visited the doctor and explained my symptoms, he simply said that it sounded like a haemorrhoid. The prescribed treatment was to wait for it to heal up and use toilet paper to suppress the bleeding. After a couple of weeks of trying this, the bleeding would keep coming after I had stomach cramps. My mum had asked around with contacts she knew to find a bowel specialist and was pointed in the direction of a doctor at Greenslopes Hospital in Brisbane.
After a consultation with the doctor, he performed a colonoscopy to find the underlying cause of my symptoms. The findings of the colonoscopy was that I had Ulcerative Colitis, a disease similar to Chrons disease. Ulcerative Colitis effects only the large intestine and causes numerous ulcers throughout the large intestine. The doctor directed us towards a gastroenterologist in the Brisbane Mater Private Hospital to oversee my ongoing treatment. This doctor was an older gentleman and explained the disease, and that there was no known treatment. I was told that I would be taking medication for the rest of my life daily, to limit the symptoms of the disease. I was also prescribed a three-month prescription of prednisone steroid tablets to decrease the swelling of the ulcers immediately.
The main side effect of this drug was weight gain. My family and I went on a three-week trip to New Zealand soon after and ate every meal at a restaurant, I would finish my plate and then finish off everyone else's leftovers and still didn't feel satisfied. In a period of two months, I had put on 16 kilograms. At this stage, I was taking 16 tablets a day. After the course of prednisone was complete, I was able to lose all that excess weight quickly due to my active lifestyle playing sport and exercise going to and from school.
The treatment for Ulcerative Colitis continued with the daily medication limiting the effects of the disease. Every six-months I travelled to visit my specialist (which I had to fly down with one of my parents from Gladstone), but I didn't feel comfortable with him, there just didn't feel like there was any motivation behind him helping me. I then changed to Gastroenterologist based at the Wesley Hospital in Brisbane. This doctor was a younger doctor and instantly gave off that spark that allowed me to gain confidence in what he was telling me about my condition. This doctor asked for blood tests to be taken and the results showed that I was low in iron. I had to have two iron IV infusions to get my levels back up to normal over the course of six months.
Over the next five years, my doctor continued to check in with me and monitor my progress and raised concerns if my tests were coming back abnormal. I had a colonoscopy every year to keep an eye on the Ulcerative Colitis. After each procedure, my doctor would give me the details of how it was all going and the current level of inflammation.
At the start of 2015, in my final semester of University, I was having my routine yearly colonoscopy. When I awoke after the procedure, my doctor came to my bedside and informed me that I had two large polyps in the middle of my large intestine which were too large to remove through the colonoscopy procedure. He then told me that these polyps were pre-cancerous and I would need to remove them to eliminate the immediate threat of having bowel cancer. I had two choices, either have surgery to remove the section of the large intestine that contained the polyps, with a high chance of the other parts of the large intestine forming new cancerous cells, or I was to have the entire large intestine removed and come out of the procedure with a colostomy bag with the chance of reconstructive surgery six months later.
This was a lot of information to take in being a 21 year old. Immediately, I knew I wanted to eliminate the risk of getting bowel cancer, so I said to remove the whole thing, which is what the doctor advised was best case. A week later I was under the knife and had my large intestine removed via keyhole surgery. I woke up feeling sore and having pumps and drains attached to my stomach. I spent two weeks in hospital recovering.
Six months later at the time I was finishing university and graduating from the University of Queensland with honours in Mining Engineering, I was asked what I wanted to do for the rest of my life with respect to my colostomy bag. I could either keep the bag, or I could have reconstructive surgery of my small intestine to form a J-pouch which is a manipulation of the end of the small intestine to create a larger chamber to mimic that of the large intestine to a degree. My initial thoughts of having a colostomy bag for the rest of my life daunted on me. All the questions went through my head. How would I be seen with having this bag hanging off my stomach? How would I find a partner who could look at me the same as someone who doesn't have one? What limitations would I have in life? So many questions run through your head in a situation like that. A decision that you know would affect the rest of your life. For me, I was still young and my perception of a colostomy bag was for someone who is elderly and requires the assistance of the bag. I chose to have the reconstructive surgery.
After this procedure, I was left with a hole the span of a 50-cent coin and depth of about half an inch where my colostomy bag was and had to let the hole heal over the next month from the inside out. Due to the operations, the small intestine experienced a bit of swelling and I had to get used to how to control the feeling of needing to go to the toilet. Over the next few months, I was going to the toilet between 10 and 16 times a day and waking up through the night having to go. This has since decreased to about 3 to 5 times and day and none at night as I have gained more control over my bowel function. With my large intestine removed, I no longer have to take medication to control the Ulcerative Colitis as it only effected the large intestine and that is now gone.
Looking back on it, I was self-conscious in the first three-month period of having the colostomy bag, but was able to outgrow this and focused more and more on informing friends about what had happened. This wasn't to brag about going through a life changing event, but to raise awareness that something so simple such as a stomach cramp can possibly lead to having part of your bowel removed. But, most of all to show that it is not the end of the world or your life.
Linear IgA Dermatitis:
Linear IgA Dermatitis is an autoimmune disease that is associated with Ulcerative Colitis. It causes multiple blister like sores to pop up on the body. In 2011, I was diagnosed with this disease whilst I was in hospital for Brugada syndrome. In late 2010, I had a sore pop up on my inner thigh and just covered it up with a band aid. A day later, the sore had spread into little blisters, so I placed a larger bandage over the area to allow it all to heal. A week later, these sores were across both thighs and started to spread to my torso, neck, face, legs and arms. These sores were very tender to touch and any friction against the area would cause the skin to peel away exposing nerves which was very painful.
I had gone to a GP to see if there was anything they could give me to heal the wounds or stop them from spreading and forming. His initial thought was that they were school sores and prescribed me some antibiotics. Over the next two weeks, the sores did not stop appearing and the healing ones would turn crusty and form hard scabs. It wasn't until I was in hospital with Brugada syndrome that I had asked the Cardiologist looking after me to see if I could have another doctor see me about my skin. The next morning a dermatologist came into my room at the Wesley Hospital and examined the sores. He said he had only ever seen the condition once in his life in Adelaide. He told me it was Linear IgA dermatitis and that it was associated with my Ulcerative Colitis at the time. He prescribed a topical steroid cream that would heal the sores that were popping up sooner and control the inflammation.
Over the next month, the sores stopped popping up and the healed sores left scars on my skin, some very small and others the size of a 5 cent coin. These scars are mainly on my arms. He said that like Ulcerative Colitis, there was no cure for it to stop it from coming back and when it comes back, it will come back even worse. Thankfully, the skin condition hasn't returned and I'm hoping that it will stay that way. Especially with me not having Ulcerative Colitis anymore as it was removed with the large intestine.
I know the focus is on the bowel related experiences, but I thought adding my last and most major medical experience would give an insight into what has all happened and how it all comes together to make me the person I am today.
At a high school swimming carnival in 2011, I had an incident in the pool where I lost all my energy and couldn't really make it any further in the middle of the race, but I made it to the edge of the pool, where the teachers pulled me out. I thought that I had just swallowed some water and that's why I was struggling and feeling incredibly weak. When the teachers pulled me out, I was almost blacked out. I remember getting lifted out of the water and then I recall sitting up right, feeling better. I looked down at my knees and had two gashes on each knee trickling with blood from where the teachers had dragged me across the concert out of pool. The ambulance came to the pool to assess me and I felt perfectly fine and decided not to go to hospital.
Two times before this event, I woke up on separate nights with some pains in my stomach and chest and my heart rate was really fast. I went to hospital both times and the hospital staff said the first time was dehydration and the second time that it was a stomach bug and had something to do with my Ulcerative Colitis. After the pool incident, I went down to Brisbane to see a Cardiologist and was told that there might be something wrong with my heart. I was scheduled to go for some more tests a few months later. I went down to Brisbane three months later and had electrical physiology studies done on my heart. I went into theatre and had my heart put through different effects under the influence of electrical impulses and causing my heart rate to go fast.
During the tests, my heart went into Ventricular Fibrillation. Ventricular Fibrillation is where the heart pumps really fast and doesn't allow for the blood to be oxygenated. This causes me to feel extremely weak and basically black out. After the testing, my parents were informed of my condition. When I woke up after the operation, I stayed in the hospital overnight and the next morning my Cardiologist came and saw me and said that he put my heart through the Ventricular Fibrillation and it was determined that I have Brugada Syndrome.
Brugada Syndrome is a major cause of unexpected cardiac death. When you hear of people running on a race track and then just drop dead, that's essentially what I have. I was told I wasn't allowed to leave hospital until I had an ICD put into my chest. An ICD is an Implantable Cardioverter Defibrillator. When I was told this information, I couldn’t believe what I was hearing. After the doctor left my bedside, I was alone in the hospital room and I broke down in tears. I kept asking myself, why has this happened to me. I called my parents and asked them to come to the hospital immediately. That was the longest three hours of my life waiting for them to come. I was so upset. But when they came, they told me that everything would be okay. They were told the previous night that I had the condition and had gone home to research it all. My dad sat next to my bed and explained it to me in a more scientific approach. As my dad is a Chemical Engineer and I was about to go into University to study Engineering, it was the easiest way for me to understand what was happening with my heart.
I stayed in hospital for another four days before I went into theatre and they gave me a general aesthetic to install the ICD. When I woke up, I hadn't had surgery. They had to cancel my operation because they discovered my hearts anatomy is different to a normal heart. So they studied MRI images of my heart and found that I don't have the proper superior vena cava connection that leads into my heart. The major vein doesn't run into my heart properly, it fuses with one of the veins that is on the heart itself then flows into the heart form the bottom of the atrium. Five days later I went back into theatre and they implanted the device. It was quite painful for the next few weeks because it's something big and different within the body. I had to learn to be careful of my chest and know the limitations of what I could now do. I couldn’t do any high adrenaline activities, could play contact sports, the list just went on. But then I realised that there were still things in my life that wouldn’t change at all.
When I went down to Toowoomba for a volleyball competition for school, my defibrillator gave me an electrical shock during the middle of a match. This was just Two months after having the device in me. It was in the second game of the comp that it went off and I wasn't allowed to play anymore of it for the rest of the weekend. The Cardiologist said when the ICD goes off, it will feel like a kick to the chest from a horse. When it happened, it’s like when your entire body cringes and tenses up at the same time. Eyes, ears, legs, everything and then just releases. You see a bright flash of white and hear what sounds like a sonic boom. The pain felt like the horse kick and had knocked me to the ground. Immediately, I let my Cardiologist know what had happened.
The following week after I got home to Gladstone, I had to go back down to Brisbane to see the doctors and they said to me that I didn't actually need the shock and could have kept playing even if it did go off. They called it inappropriate therapy. My heart had a zone at when my heart rate gets up to 200 beats per minute my device determines whether or not my heart beat is normal or abnormal and if abnormal will shock me. Over the volleyball weekend, I got my heart rate up to 200 beats per minute 32 separate times and on the 32nd time it decided to go off as the ICD determined that my heart beat was irregular. The data that was in the device said that it was a normal beat and not different to the other 31 times. The Cardiologist changed the zone up to 222 beats per minute to allow me to play sport. 6 months after that event, I was playing volleyball again and I was in the warm up and my defibrillator shocked me again, this time it only effected my torso and I only stumbled. I sat down for few minutes and got straight back up and played the rest of the game.
The next day the Cardiologist rang up and said to come in the next week. They told me that I suffered inappropriate therapy again and this time adjusted it from 222 beats per minute up to 240. Now when I go for just a casual jog or run, my heart rate goes over 200 beats per minute easily and I have to monitor how I'm feeling when I'm exercising so I don't overwork my heart and cause it to go into Ventricular Fibrillation.
That is the overall story of my health experiences, two involved with my bowel and the last with my heart. As I said at the start of this email, I am only 25 years old. Although I'm young, I have had a few major health complications. The first at the age of 14, the second and third at the age of 17. Being a teenager when being diagnosed isn't exactly something you would think would be happening that early in your life. Even now, I look back and think I am so lucky to be alive. Modern medicine and technology has improved the chances of survival dramatically from these conditions. I can only say one thing about these conditions, they didn't just change my lifestyle, they changed my entire life and I hope to live a long and happy life.
Going from a simple bleed in my stool, to potentially having bowel cancer after a routine colonoscopy and having the large intestine removed. You would think that something like this would happen to someone in their 60’s or older. But no, it started when I was 14 and the worse happened when I was 22. This, plus my other 2 conditions, especially my heart one, made me having emotional pain and stress. There have been periods of time where I just gave up. Enough was enough. I didn’t want to have to deal with all this in my life. I have the rest of my life and I haven’t lived even 2/3rds of it if I’m lucky. What else could happen to me? I got so depressed about it, but I had the support and love of my family and friends to get me back up. The biggest if thing that actually keeps me going, is that I’m alive and there are people out there that are worse off than me. People with terminal illness or who are bed ridden. For me, the way I see it, is I want to help raise awareness to situations like my own that can look so simple, but turn so complex no matter what your age. I urge friends to have tests done, because what’s not to say that there is something there, just not hiding away waiting for its moment to strike.
I live a happy and normal life. It’s normal for myself because it is what I have and what I have to deal with. I’m not just the only one.