I find it somewhat difficult to talk to people about Crohn’s Disease. I try and explain what it does to my body without being too graphic, and then I usually try and make out that it’s really not that big of a deal by saying “but I do my best to manage it as well as I can”. I find that it’s just sometimes easier to pretend everything’s ok. Then there is usually a compliment given to me like “but you don’t even look sick”. This can be really frustrating for some people. Sure, at my worst point I looked whiter than a ghost and you could see all the bones poking through my skin, but now that I look relatively well, it doesn’t necessarily mean I feel great on the inside. Inflammatory Bowel Disease really can be an invisible disease. I know this “looking well” compliment irks most people with Crohn’s – but I try to be an optimist. I think you’ve got to be when you are fighting this incurable disease. Therefore I like to think that, by someone telling me I am looking well, it is a compliment on my character, my perseverance, and my will to keep a smile on my face no matter what the challenges of each day may be.
I was thirteen when I was diagnosed with Crohn’s Disease. I had experienced two years of extreme weight loss, loss of appetite, loose stools and frequent toilet use, arthritis, mouth ulcers, Erythema nodosum, bloating and stomach cramps. It all started in the Christmas holidays when I was eleven years old. I came down with some sort of virus where, for three whole weeks, I ate and drank nothing but water. I could not keep anything down, I had no energy and I constantly felt nauseous and tired. After being put on some antibiotics for this supposed ‘virus’ I slowly began to try and eat small amounts. But, I never fully regained my appetite. I had lost a large amount of weight and my appearance changed in a very small amount of time.
When I went back to school everyone stared at me. I looked so different. I was starting high school that year, but it wasn’t supposed to be nerve racking because I was at a K-12 school, so I kept the same friends and same school. I think people thought I had become one of those teenage girls who wanted to starve themselves. I didn’t tell teachers or friends what had gone on. But really, all my parents and I knew at this stage was that I had had a very bad virus. But I knew deep down I still felt very ill. It is this period of my life where I learnt the power of the mind. I had a strong faith in being very positive. Even on my weakest days where I had no energy, I made sure that for the six hours I was at school I put on a brave face. I was bubbly and I laughed and I had fun, only to get home, lie down, and feel sick and exhausted for the rest of the day.
This routine continued for the next two years. In that time I was being treated for arthritis due to the inflammation in my knee and ankle joints. I had cortisone injections in my knees which gave some relief. I continued having stomach aches and loose stools. I was still losing weight and things were not good. I do however take the blame for persevering with this for way too long. I fooled my doctors, teachers, friends and most importantly my parents with my positive attitude, and my belief that if I pretended things were ok then eventually they would be. I hated the thought of being a burden to my family who had already been through some tough times, and I was determined to hide all the pain I felt. But the reality was my body was in a dire situation.
I was just so sick one day my parents decided to take me to see a Paediatric Arthritis doctor in Sydney. We lived five and a half hours away from the city, in a country town where doctors had little knowledge of my symptoms. We walked in, sat down and the doctor asked about all my symptoms and said “I am sure you have Crohn’s Disease”.
Well this was something we had never even heard of. And to think it took the doctor two seconds to figure out what was wrong was unbelievable. It was here that my family and I learnt just how much more helpful doctors in the city were, due to their greater level of exposure to different illnesses. Straight away I was sent to Westmead Children’s Hospital where I was put under the care of a Paediatric Gastroenterologist. I had many scans, blood tests, and a colonoscopy. Within a week I was diagnosed with Crohn’s Disease and placed on a very high dose of prednisone. It was 2008, and I was thirteen years old.
In the time period between my diagnosis and 2012, there were many challenges. The steroids messed with my body, but they really helped with the Crohn’s. I was weaned off them, as I was weaned onto Azathioprine (Imuran). My weight went up and down, and finally became stable and healthy. My bowel habits altered, but I continued to have issues with digestion which I managed with medical supplements. There was one point where I just needed to rest my intestines, so I went on a six week Ensure Diet. It required a lot of strength and perseverance. I ate and drank nothing but Ensure and water. I am proud to say that this took place on my 15th birthday – and I didn’t even have a piece of cake! Monthly blood tests revealed I always had some level of inflammation still, but I just tried to manage the symptoms day by day. My medication seemed to be helping, I was no longer skin and bones, and I was able to live a relatively normal life on the days I didn’t succumb to pain or fatigue. I put all my energy into doing really well at school – and it payed off.
In 2012, a week before my first HSC exam, the pain got too unbearable and I had to go to hospital. After massive amounts of morphine, and some scans, it was clear I had an obstruction. I stayed in hospital a few days until it passed, but more really bad pain episodes occurred. Despite this, I managed to get through my HSC with an ATAR of 87 .75, as well as move out of home and begin university at the start of 2013. A colonoscopy had found that, from all the years I suffered with extremely large amounts of inflammation in my bowel, scar tissue had built up inside, causing a stricture. So with the pain not subsiding and a will to make the most of my life, I decided upon a bowel resection. It was one of the most difficult decisions I have ever made, due to the risk of needing more surgery once you have your first. But I tried to think of the positive side of things. I was on a waiting list for surgery, however things were sped up when I was sent to hospital in another episode of unbearable pain and vomiting. I was given a nasal-gastric tube to settle my stomach and was told that the next morning I would be receiving surgery. I didn’t even have time to think.
March 2015 will mark two years since my bowel resection. About 30 cm of my bowel was removed in the end – much more than we were expecting. I have a nice scar that reminds me every day of what happened. I spent a lot of last year quite disheartened because, though I thought my surgery initially had improved my symptoms, I still had episodes of pain and digestion troubles. Just when I thought I had lost some of my bowel for no reason, I saw a specialist in Sydney who said to try a low FODMAP diet. In basic terms, you take out foods in your diet which have high levels of hard-to-digest food components commonly found in certain fruits and vegetables, honey, milk products, wheat products and legumes. I feel it has helped me. I still have some digestion issues and pain – but it is definitely not as frequent as before.
Now, at nineteen years old, I have gotten used to my life as a Crohn’s sufferer. I understand the daily challenges, and I do my best to manage them. I also try very hard to live a normal life. I have managed to keep going with my university studies since 2013, and I live four hours away from my parents which can be difficult when I’m not feeling well, but it gives me that feeling of independence – like I can just be a normal teenager. I keep the mindset that I am in charge of my disease; I don’t let it be in charge of me! I hope that in my life time I will see the world’s knowledge of IBD grow. To find what causes it, and even better to find a cure would be the best thing! At the moment I have been told that the virus I had at age eleven may have triggered my Crohn’s, but also possibly the stress from the death of my brother which occurred only the year previous to me falling ill. It would be great if one day there wasn’t so much vagueness surrounding this area.
I hope my story has been able to provide even a small amount of comfort to others battling this disease. I know that when I became a CCA member, the personal experiences I read about in each magazine were very comforting. It is great to know there are others out there fighting the same fight. I wish you well with your Crohn’s journey and I hope that, despite the challenges and the pain, you can find some comfort in the fact that, through your strength and perseverance, you are learning to value your health and your life in a way that many others will never get to experience. You are learning the art of gratefulness.