Mother and son Tracey and Taylor Murrin team up to survive the ups and downs of their IBD journey while trying to come to grips with how it feels to be in each other’s shoes.
I was 14 when Mum was diagnosed with Crohn’s disease, 13 when all the complications began. I had little understanding of Mum’s illness in the beginning for two reasons. The first one being that this disease is commonly an unspoken issue. The second reason was purely because I did not want to acknowledge the severity of the situation.
I was an only child with a single parent and it terrified me to see what my mum was going through. The situation was made especially difficult because we have such a strong connection and it was clear to me that she was going to hell and back. I could see it, I could feel it, but I would not permit myself to know more as my thoughts were haunted enough already. Despite this conviction, we were in it together, so I made sure I understood all I had to and looked after her to the best of my ability.
Hospitals became a second home for me, which has left me with a deep aversion for them. To this day I cannot step foot into one without bad memories flooding back. I would still take any chance I could to spend time with Mum though, as she is my home. My actual home just felt like a house without her. If I had one wish back then, it was for her to be home. Year after year she was bedridden in hospital and I felt helpless.
There were too many times that I had to call the ambulance for Mum. I can still hear the screams from her room when the pain became unbearable. There was no warning or pattern; it just happened. It was during these times that I felt the most powerless in my life. Seeing the one person I loved the most in more pain than I have seen anyone in before, even until this day, and knowing there was nothing I could do to take it away, was heartbreaking. The blood, tears and bad memories I have of those nights when I had to call the ambulance will never leave me. Watching her leave home in an ambulance never became easier, in fact, it became much more difficult each time. After a few incidents I felt like quite the paramedic myself!
There was one night that stands out in my memory where my mum came out of the bathroom and as I went to check on her, she passed out. She was unconscious for what felt like a lifetime. I think this was when she knew she couldn’t go on like this, for me and for herself. A long exhausting series of operations began.
Music is my therapy. Being an only child, the only person I could honestly confide in was my mum. When she was gone I felt completely alone. Even though she was only a phone call away and was always there for me, I could not bear to add to the struggles she faced day in and day out. She was going through enough already. This was when I turned to music. It started as an escape from reality, a distraction to get my mind off what was happening.
Inevitably, I could not remain silent on what I refused to talk about for very long. I don’t know what would have happened to me if I had not turned to expressing myself through the music I am so passionate about. It is how I pulled myself out of a dark place.
It was while I was in hospital by my mum’s side that I began to write FIBD because I needed to get how I felt off my chest. I tend to keep a lot to myself and I was not ready for the world to know what I was going through, so at that point in time, it was just for me. There was quite some time between writing the first verse and finishing the song. Every time I went to work on it, I would go over what I had already done and would not be able to continue as it was difficult for me to be vulnerable. Coincidentally, I finished the song just before Mother’s Day, so that is when I presented it to Mum. Being the sap she is, the tears flowed after just one line, but when I finished the song for her, the smile on her face said it all.
It was Mum who convinced me that there are other people going through the same experiences that needed to hear this song. During Crohn’s and Colitis Awareness Month in May 2017, I released FIBD, for Mum and anyone going through what she went through as well as for people in my shoes. The reaction I received from the song was beautiful.
The journey Mum and I went on together completely changed who I am as a person. Not having her around for months on end while she was in and out of operations in hospital taught me to be independent. When she was home, I had to step up and be the parent at times, which helped remove my only-child syndrome (not all of it). Although I must mention that even when Mum was in the darkest of places, I was still the number one concern for her every single day. Many past experiences are still painful but when I think back on what my mum and I have gone through, it also grants me the certainty that there is nothing that we cannot overcome. As long as we have each other, we are unstoppable.
At first, I did not even know what was happening to me or how to deal with it myself, so as much as it pains me to admit it, I didn’t even think about what Taylor was going through. I think that initially, when you are in such pain and so lost trying to understand what is happening to you, it is hard to focus on how those around you are feeling.
My Crohn’s became aggressive very quickly. When my flares got worse and Taylor had to start calling the ambulance and watch me collapse from pain and loss of blood, the effects on him became more than I could handle seeing him go through. I talked with the surgeon as this was becoming a regular event and told them I could not live with putting my life in my son’s hands. It was not fair on him. As a result, the decision was made to take out part of my bowel. That was my first surgery.
Seeing his face every time I left for surgery was pure hell. I cannot even think of it without crying to this day. That look on his face – trying to appear strong for my sake but holding back tears and fear. I hated my body and this disease for putting him through that. We are extremely close and the thought of leaving him alone terrified me. I did develop an amazing talent for acting. I tried so hard to always smile or make a joke, to wear a mask of bravery. But as he got older, he always knew if I was in pain or just faking being okay. Taylor always tried to be the man of the house and had a strong protective instinct towards me even as a little boy before I got sick. There were many times when the joint pain and arthritis due to IBD was so bad that I couldn’t even get out of bed. That was very
frustrating for me, but Taylor would always make sure I was okay and looked after me. He even offered to learn how to change my bag should I be physically unable to – now that’s love.
The distressing situation made him grow up very fast and he had to take on a lot more than he should have. If I can single out one positive outcome, it’s that he is an amazingly compassionate and empathetic person and has a huge heart. Our journey together has brought us closer than I thought possible.
Seeing his face every time I left for surgery was pure hell. I cannot even think of it without crying to this day. That look on his face – trying to appear strong for my sake but holding back tears and fear. I hated my body and this disease for putting him through that. We are extremely close and the thought of leaving him alone terrified me. I did develop an amazing talent for acting. I tried so hard to always smile or make a joke, to wear a mask of bravery. But as he got older, he always knew if I was in pain or just faking being okay. Taylor always tried to be the man of the house and had a strong protective instinct towards me even as a little boy before I got sick. There were many times when the joint pain and arthritis due to IBD was so bad that I couldn’t even get out of bed. That was very frustrating for me, but Taylor would always make sure I was okay and looked after me. He even offered to learn how to change my bag should I be physically unable to – now that’s love.
The distressing situation made him grow up very fast and he had to take on a lot more than he should have. If I can single out one positive outcome, it’s that he is an amazingly compassionate and empathetic person and has a huge heart. Our journey together has brought us closer than I thought possible.
When I had my second surgery, my bowel was perforated and I had E. coli, peritonitis and sepsis and I was put into an induced coma and on life support. Taylor’s face is the first thing I remember seeing when I woke up. He was only 14 and he looked so relieved, but so scared.
It is funny what you remember but I recall when I finally got home from hospital, Taylor cut his finger (not badly) and he came to me for sympathy. I recall feeling no compassion for him. I was still so weak and trying to adapt to life with a colostomy bag. It was at that point that I did some serious soul-searching. It is so easy to focus on our own pain and frustration that we forget that everyone is going through their own issues and emotions. That
moment was an important life lesson for me. We can lose sight of how this illness effects the people who support us. They did not ask for this either.
I have always been more at ease looking after others than being looked after myself, and when I started to feel a little better, I looked into how I could help other people and spread awareness. I had personally never heard of Crohn’s and colitis and found that most people when I told them what I had, looked at me quite blankly. That is when I put my hand up for the CCA China Challenge. I travelled to China with the most amazing group of people and we trekked along the Great Wall and raised money for IBD. I have had some other events that I have put together like Cow Poo Bingo and High Tea for IBD and I was a finalist in the Australia and New Zealand Great Comeback Awards. I have attended some seminars and spoken about what it is like to have a bag.
One of the most rewarding things that I have done to date is to mentor at the CCA Queensland Youth Camp. I was diagnosed at 35 and I have always thought that since it was challenging enough as an adult, how must young children feel going through this roller coaster! I have met some amazing and inspirational young people and their beautiful families at these camps that have strongly impacted my life not only as a fellow IBD’er but as a human being. They are such strong and incredible kids who have been through so much at such a young age. But regardless of all my fundraising and awareness efforts, it was my beautiful son who did something so amazing that it became the most incredible gift I will ever receive.
Thank you Tracey!
Brad McAuliffe threw off his doubts and refused to let ulcerative colitis hold him back from life’s adventures.
In mid 2016 I experienced my first ulcerative colitis (UC) flare, although I didn’t know it at the time. Like many others with UC, I was experiencing a ten on the pain scale and very quickly progressed to needing 20 to 30 toilet trips a day. It was the scariest four months of my life. I was struggling at work and university and no one had a clue what was wrong with me.
Once I was diagnosed with UC, my situation became better temporarily as I shifted between different medications that would work for a short period of time before losing their effectiveness. I was left feeling completely out of control of my life. I spent a lot of time thinking “why me?” and allowed myself to be buried in the disease instead of doing my best to continue living my life.
Throughout my adult life I’d spent all my time working and saving, so when UC struck it was a pretty massive change. I had a lot of ideas in the pipeline for cool trips and adventures I’d like to do but I never got around to any of them. Work, bills, house. Even after my first flare with UC I went back into the groove of working as much as possible and not taking much time for myself.
I think I had this idea that I’d be different and that my UC was under control; I could go and do those things at any time. I was wrong, terribly wrong. I don’t know if it’s the young male invincibility syndrome where you think you’ll be fine no matter what but when I went through my next series of flares and no new medications would work, I had a really tough time processing it mentally. What was the point of just working and saving if I’m going to keep getting sick and not really have any time to enjoy myself and what I’ve worked for?
At the beginning of 2019 I realised that I had this list of adventures I wanted to go on that I hadn’t even started. The reality of my situation with UC set in – I might not get the chance to do a lot of them in the future, so I decided to jump on the internet and book a flight.
The most difficult trip on the list at the time was Nepal. I had some idea that this would be the most difficult because there would be a lack of adequate medical support over there along with poor hygiene standards. Nepal also has a reputation for travellers getting sick. I’d seen photos of the Annapurna mountain ranges years prior and desperately wanted to see it for myself, so I thought “now or never”.
I started the fundraiser for CCA as a means to lock myself into going and not backing out when self-doubt crept in. I’ve been disappointed to see how far our public health system is stretched and how much a lot of the community are relying on outside donations to receive help. I was in a position to make something more of the trip and thought it would be a great opportunity.
November rolled around very fast, and before I knew it, I was on a plane to Nepal. The trip was the most challenging undertaking I’ve ever faced both physically and mentally.
I’d been put on Remicade a couple of months before the trip, but it didn’t seem to be working, so I also had to go back on steroids to make sure I wouldn’t flare up while in Nepal.
All the drugs I was on, and their side effects really wore on me not to mention managing the burden of carrying a case of pills around the mountains. Luckily, while away, I faced no GI related issues at all, not even an upset stomach from dodgy food or water!
Over 12 days I trekked 135km and climbed 8133m around the Annapurna mountains, crossing the Thorung-La pass at a maximum elevation of 5416m. I’d taken my health and fitness for granted a lot before being diagnosed with UC and I had a few moments on the trek where I broke down emotionally, just because I was elated that I was able to get out and do this trek while my disease was under control.
I really felt in those moments that I could achieve anything without my UC holding me back. The trip was a massive challenge that really took every bit of strength out of me, but I’ll cherish it for the rest of my life. The people I met, beautiful scenery I hiked through and the ability to do some good for our community and CCA made it the most impactful experience I’ve ever had.
I can’t thank my family, friends, everyone that donated to the cause and CCA enough for all they’ve done for me related to the trip – and I can’t wait to get out there and tackle the next one.
Tansel Ali’s Story
Memory champion Tansel Ali talks about how living with Crohn’s disease gave him a new perspective on life.
Being diagnosed with IBD can be a complicated process. Throw in a foreign language and the journey can take a few unexpected turns, as Queensland’s Renee Wickson discovered.
I WAS diagnosed with indeterminate colitis about six years ago.
My story starts in Nagoya, Japan, where I was teaching English. After about three months of being there, I started to take time off work due to exhaustion. My stomach felt like it was in knots a lot of the time and my reaction to food was very random, from throwing up to the runs (the squat-style toilets are not very co-operative during these types of symptoms!)
My Scottish flatmate convinced me to head to the doctors to make sure nothing was seriously wrong. Going to the doctor in Japan was like going to the bank; you took a number from a machine and you sat and waited for your number to be called.
I was told to sit and wait for the doctor in the hospital who could speak English.
This then turned into a drawing pictures and charades scenario, resulting in the doctor telling me I had AIDS. AIDS? How in the world could I have AIDS? By the end of the consultation, I was told that AIDS was the wrong word and I had to go back for a colonoscopy because I had something wrong with my bowels.
Although I still had no idea what was wrong with me, I put my trust in the doctors. My first colonoscopy was done with out being knocked out! That’s an experience I hope to never have again!
After medication and a strict diet I decided to move my travels to the UK where I continued on with things fairly fine. At this point I knew things weren’t right but I thought things would fix themselves. I just had to ensure I took the medication and watched what I ate.
It wasn’t until I was admitted to hospital after returning to Australia for severe bleeding and pains that the reality hit me. After specialist appointment after specialist appointment, I came to the realisation that what I had was a chronic illness. It was serious and my life would change because of that.
Stopping on a car trip fairly regularly is the norm, along with awkward conversations at barbecues when I can’t eat any of the food they have served without spending the rest of the night in their toilet. Having to say no to parties is not part of my personality, so it has taken a long time to feel comfortable with having “Renee nights in”. The emotional and physical rollercoaster that I have been on over the last few years has taken me to a point in my life where I have learned to live life according to my own rules. I try to make IBD work for me, rather than me revolving my life around it.
I have a very supportive family, an encouraging partner and friends who cheer me up when things are just getting too much. I have managed to accomplish awesome things so far, such as travel, sports and simply working at being positive about my situation. I would like to think that there is lots more excitement to come and although the road can be a little more difficult with having IBD, it makes it all worth while at the end!
Rebecca Thorpe’s Story
Travelling in a new direction. It wasn’t the gift she had been wishing for, but Rebecca Thorpe has quickly managed to adapt to a new way of living with IBD.
I didn’t much enjoy having a colonoscopy instead of attending my work Christmas party and I’ve certainly received better presents than an ulcerative colitis diagnosis. But being the positive person I always try to be, I was glad to learn the cause of the bleeding that had been of concern for two months. Remembering my grandfather had died of bowel cancer had played havoc with my dreams.
This was Christmas 2009. I’ve had just over a year to get used to life with ulcerative colitis. The first few months were hard. My initial medication of Colifoam, Colazide and steroids didn’t stop the bleeding, so I had to switch over to using Salofalk enemas as well. I wasn’t mad keen about shoving things up my bum, but I soon got used to it.
Initially I was reticent to tell anyone what was wrong with me. Who wants to talk about their bowels not functioning properly? But thankfully I knew about Crohn’s & Colitis Australia through a friend who has Crohn’s.
CCA definitely made a difference; reading the magazine and brochures they sent me when I joined introduced me to a whole new world. Their kit for the workplace was especially helpful, as was the Can’t Wait card. My line manager at work was a tremendous support and wanted to do whatever she could to help.
I soon realised that if no one talks about these things then people don’t have the opportunity to gain understanding. As someone who lives her life by Gandhi’s teaching to “be the change you want to see in the world”, I was challenged to overcome my embarrassment.
Rather than continuing to hide my condition from most of my friends, I began to open up about it. I was overwhelmed by their support, encouragement and love. Many of them Googled what ulcerative colitis was to get a better understanding, which I really appreciated.
Diet was obviously a big factor for me. Knowing what a committed foodie I was, my friends took pity on me for having to restrict my diet so much. But learning what I could and couldn’t eat was key to overcoming my flare up and trying to get my bowel function back to normal. Well, my new kind of normal, at least.
My specialist, Dr Glenda Hartley, congratulated me on seeking help early and was great at explaining things in a simple way. “Eating high-fibre food is like rubbing sandpaper on a raw wound” was an effective visual for me. Glenda was great about calling me when I received some abnormal blood test results: the steroids I was on were raising my blood sugar levels unacceptably high. She advised me to treat myself as a diabetic while I was on the steroids. Trying to find low GI foods that are also low in fibre was no fun and continues to be a challenge.
The first few months were hard. The mornings, as I am sure many CCA members would agree, were the worst. Thankfully, with the support of my wonderful line manager, I often worked from home in the morning and headed into the office in the afternoon.
I wanted to support CCA in a more meaningful way than just donating to them (though I know they always need help on that front!) and replied to the call for volunteers to hand out flyers on World IBD Day. I also attended the Silver Lining Ball and got to meet the lady who made CCA happen: founder Angela McAvoy.
I managed to get my UC under control enough towards the end of last year to take a trip overseas, getting the chance to explore the Balkans and visit friends I had made when living in Europe for five years. I took my Salofalk enemas with me just in case, and used them a couple of times. There were a few foods I would have loved to try, but knew they weren’t worth the risk. But overall, I had a great time and am already planning my next trip.
I began 2011 with a flare up on New Year’s Day, but this time I knew what to do and am hoping I will get things under control a lot sooner. I will always miss chilli and lentils, but am grateful for the love and support I received from my manager and friends over the past year, and to CCA for the wonderful work they do. I’ve never had to call the IBD Helpline, but knowing it is there is a great comfort.
Patricia Poole’s Story
Patricia Poole felt as if her life were grinding to a halt, until she decided to get her life back on track, literally.
I WAS diagnosed with Crohn’s disease in 1988, aged 22. I underwent surgery to remove the diseased portion of my bowel and in 2002 I had another surgery for the same reason.
I have suffered depression from an early age for various reasons and for me this was exacerbated by having a chronic illness. Unlike many Crohn’s patients, I had major weight gain following my last surgery, reaching 103kg. I was a divorced, sole parent living alone in the country and I felt stuck in a rut and was struggling financially.
The turning point for me came when I read a book by paraplegic Olympian John Maclean, called Sucking the Marrow out of Life. I was totally inspired by his never-give-up attitude and his philosophy of “only possibilities”. It was an awakening for me that although there were some circumstances in my life beyond my control, I was choosing (unconsciously) to focus on the wrong things.
Through further connecting with John, he taught me the importance of goal setting in order to achieve our goals, visions and dreams. I set myself the huge challenge of walking the Kokoda Track in Papua New Guinea as part of a group of 12 women called the Kokoda Chicks. Collectively we raised almost $90,000 in our fundraising campaign for the National Breast Cancer Foundation. It was a huge physical challenge for me, but also an awesome experience I will treasure forever.
Following on from that, I set myself a goal of running a half marathon (21.1km), even though I was unable to run for five minutes at a time without stopping. I was fortunate enough to stumble upon Pat Carroll, an online running coach, while surfing the internet. Pat, being an elite marathoner with more than two decades experience, was able to sensibly and realistically guide me to reach that goal within a four-month period. Being a sedentary person for most of my young life, I surprised myself that a 42-year-old women with a history of chronic illness could achieve such things.
Then, on July 4 this year, I ran my first Gold Coast Airport marathon, 42.2km, which took me a little over five hours. I am not a fast runner and was unsure I could achieve this goal until I crossed the finish line.
This was good training for completing my third consecutive City2Surf in August, raising funds for CCA for the second year running.
I’ll never be an elite athlete but I do enjoy the feeling of being a relatively fit 44-year-old woman. I have done four half marathons and a few 10km fun runs, and lost 28kg along the way through exercise and healthy eating.
I don’t know what the future holds for me in relation to my Crohn’s disease. Since my last surgery I have been very blessed to have been mostly pain and symptom free. I’m still on medication and I do suffer fatigue but I think the hugest difference for me has been my change in attitude. I now choose to focus on the can do side of life and gratitude mixed in with some self belief.
Living with a chronic illness and being uncertain what the future holds can be very daunting. Pain and other symptoms can make social situations and the like seem very daunting. It’s easy to feel isolated and alone. I encourage others to try facing their fears, whatever they may be, and also to set themselves a challenge, knowing that all we need to do to get the ball rolling is take one step at a time.
Nicole’s Story, Everday Counts Towards Happiness
I was first diagnosed with Crohns Disease when I was 19 years old, although, looking back; I had bowel issues long before then. When I was diagnosed I had been sick for months and the doctors had no idea what was wrong with me; I had lost a ton of weight, my hair was thinning, I was exhausted and constantly running to the bathroom. None of these symptoms led to the diagnosis of my Crohns disease however, until, one day I felt a hard lump just below my tail bone on my bottom. I went straight to the Doctor with worry and the next couple weeks followed in a blur of ultrasounds and making appointments. I was referred to a surgeon initially and my surgeon took one look at the lump, asked me how I had been feeling and went onto guess I had an anal fistula and most likely Crohns disease, this was soon confirmed by my specialist through a colonoscopy. As a 19 year old girl with an anal fistula and Crohns disease I felt helpless, afraid of what Crohns disease was, sad thinking that my body was attacking itself, alone with my illness while everyone was out being young and I also felt bad knowing that there are people worse off. I had to undergo surgery initially to have a seton put in for my anal fistula which lasted for 3 months and I was put onto Infliximab infusions for 3 years.
When I first got diagnosed with Crohns disease I was working on becoming an accountant at university. I had gone to university not really knowing what I was going to do with my life but enrolled into commerce anyway in the hope I would find something that sparked an interest. Second year came around quickly and I needed to choose a major and I chose based off what I was told was a “good job, with good pay and stability” I chose accounting. I quickly had no interest in it and had to work extra hard at it because it did not match me. I applied for a cadetship in accounting thinking maybe the job would be different to the study and was rudely awoken when I realised how unsuited this was for me. I ended up stressed and became very unhappy till I was eventually put on anti-anxiety medication from the stress. All the while I was having infliximab infusions and trying to do everything right food wise for my Crohns, but the stress itself was doing more damage than all the good I was trying to implement. I was spending everyday concerned that the stress I was under would led to a flare up and spent the majority of my days running to the bathroom still.
Luckily July 2014 came around and my fiancé and I had planned the holiday of a lifetime to go to Europe for 5 weeks. It was here away from everyday distractions I allowed myself to truly think about my situation, I thought long and hard about my Crohns, my career, my happiness and the damage I was doing to myself. I realised this was my one and only life and my one and only body and I needed to focus on; me, my health and my happiness. I came to the mindset that I was punishing myself for no reason based off external pressures that didn’t matter; I needed to stop caring about the opinions of others that didn’t know my pain or my everyday worries, I needed to stop thinking that I had chosen my fate and change wasn’t an option and I needed to start thinking more about me and what I deserve.
With this mindset I returned to Perth and quit my job in accounting to go work into a retail job I love and to try focus on hopefully becoming a Dietitian specialising in gastrointestinal diseases something I feel very passionate about. Although having a job you do not like may seem like a small facet of your life, the lesson I came to learn is that I do not deserve to have any unhappiness imposed on me that I have the power to change and this is something I try to apply to all aspects of my life now. If I didn’t have Crohns and didn’t appreciate my good days as much as I do due to having Crohns I may have never realised this. Although Crohns has imposed many limitations on my life it has given me an insight that many will go through life never having – that life is short, life is hard and that every day counts towards happiness and we have to make ourselves happy.
I have recently had a relapse with my Crohns my body built antibodies to infliximab after 3 years, my disease all came back, I had to get my seton put back in again due to the flare up and I will be starting on Humira in the coming weeks. It was hard hearing I was back to where I had started physically after my 3 year journey especially after trying so hard to get to a good place with my health but I also realised I was in an entire new place mentally than when I was first diagnosed, I have understanding and a self-interest I used to lack. I have realised this is the nature of the disease and I hope that there will one day be a cure for everyone who struggles with Crohns and Colitis so that we do not have to experience the and pain of our diseases.
I have learnt I need to help myself and when I have good days I have to live for the day.
Hello, my name is Lachlan. I am 15 years old and I have Crohn’s Disease. How did I find out I had Crohns’ Disease, well let me take you back to the start of last year.
I was rolling around in my bed in pure agony, I could barely move, walking no – running to the toilet took all my strength and I had to hold my stomach just to make it on time. I felt 100 not 14, I’d only been to school the first 2 days when the teachers had handed out text books and here I was back in my Doctors surgery for the 3rd time in a week. He thought I had gastric, as that is what I told him I had. I wasn’t getting any better and everyday I was getting weaker and weaker, till I would rarely move from the lounge or my bed. My parents were beside themselves with worry , and when I started to vomit late one night, dad drove me to the hospital.
It was far worse then I expected – after x-rays and ct scans, it turned out I had a blocked bowel. The vomiting was actually my bodys way of getting rid of the waste. I was immediately transferred to the Sydney Children’s Hospital, Randwick, after more tests and a couple of days in agony, I was taken to theatre to have my bowel “unblocked”.
Later the worry for the Doctors was whether or not I had toxic bowel syndrome or not. Luckily for me I didn’t and I was then taken back to theatre where I had a scope and they found out I had Crohn’s.
It was all new to me and to my family, I was told I would have to live off a milk product called “Osmolite” for 12 weeks not eat any food what so-ever and the only thing I was allowed to add to my Osmolite was Nestle Quik nothing else. After 2 weeks I couldn’t stand it any longer, I started to vomit again the thought of drinking it now made me feel sick. I was now down to about 44 kilos and at 173cm tall I was very very underweight.
Now, I was back in hospital having a tube plunged down my nose to my stomach just so I could have the Osmolite. I felt so depressed and different from everyone else. I was having needle after needle and test after test. It wasn’t until a boy came in opposite the same age as me who also had Crohns that I started to think I wasn’t alone with this.
During one of my few days out of hospital, I went back to school with mum to pick up my brother. I was surprised that not many of my old friends came to say hello (maybe they were scared of the tube or maybe I just looked like an alien). It wasn’t till much later, when I started to feel well again my brother told me that a rumour had circulated after that visit that I had an eating disorder, anorexia. One parent even told mum she didn’t like to ring as she didn’t know what to say as she was told by her son I had anorexia. Mum told me not to worry as people were scared of what they do not know.
When, I came back to school in second term (that’s right I missed the whole first term) things were very different I needed a special pass, so I could come and go to the toilet when I needed to. I couldn’t play sport for many weeks as I was exhausted all of the time, and I was even given a lift key so I could go to my lessons on the top floor. I only had one teacher who was on my back about not having my term 1 work up-to-date, but mum sorted him out. The only other time I had a problem was when the principal decided to lock the toilets as a punishment for some boys misbehaving during school time. So I just went to sick bay, rang mum and went home.
My life changed so much last year and I missed so much school to attend hospital appointments, blood tests etc. even when I started to feel well.
Fast forward to this year 2008, I was back playing cricket and during the summer break was up at my Grandparents place going swimming everyday when oh no here we go again. I ended back in hospital again, this time I probably made it to school a total of two weeks in the last part of first term if I was lucky. Again, I had that tube attached to my face like an extra limb, again I had to have a milk suppliments, but this time they noticed something different when I had an ultrasound. I have kidney stones (what else could possibly go wrong with me). They will have to be removed by an operation later in the year when my strength is better and I’m off my steroids. While in hospital I counted how many tablets I had in one day 18 that was more than my diabetic Grandfather who has cancer. Each time I left hospital, after a tube was inserted, we had to hire a pump and buy bags and mum and dad would have to get up during the night to top up my bag.
This time I was not going to let my illness get me down. I had something to look forward to – the first ever Crohns and Colitis camp sponsered by Crohn’s and Colitis Australia.
My mum was on the committee and while I was laying in hospital she would say we are going to be doing this at camp or that at camp, I could hardly wait. I even told the doctors if I was still attached to this drip it would be going to camp with me. I hope CCA, sponsers many more camps as it was great seeing kids who were like me, I didn’t feel as isolated. Some have even become really good mates. Thanks CCA!
Hello, my name is Josephine and I am 14 years old.
In 2010 my family and I went on trip. We drove our old caravan up to Airlie Beach and saw the Whitsundays. It was beautiful. But on the way up there we stopped at Byron Bay, that was the first time i remember being really affected by my bowel. I had not yet been diagnosed with Crohn’s, however i was spending up on an hour on the toilet. My family spent a lot of time waiting for me, they just thought it was a faze I was going through. We tried to put my toilet trips to the side and enjoy our holiday, but it was hard, I had to know where a toilet was at all times. When we got back 2 and a half months later I started passing blood. I didn’t think much of it and the bleeding stopped. Through the rest of 2010 I felt dreadful. I didn’t want to go to school because I was scared I would need the toilet.
One evening, my whole family were in the bathroom my sister and I shared (I don’t know why they were there!) I was doing a poo (as per usual!) and as i stood up to flush, dad saw the bowl was stained with blood, my blood. I hadn’t bleed like that in months, ‘what is wrong with me?’ I thought and I was scared. Mum rang our GP the next day and she forward us to someone from the Royal Childrens Hospital, unfortunately, he didn’t give us any answers. I was put into the hands of Gastroenterologist Professor Tony Catto-Smith. I immediately had a scope and it confirmed I had Crohn’s. I had many other tests to check and double check it wasn’t something awful.
My family had no idea about Crohn’s so my mum and dad read every book under the sun about Crohn’s. They know all about it now.
We were sent home from the RHS and started medication. I had never taken a tablet before and i was so scared. Mum sat me down on a stool and said to me “Josie you have to take this pill” I started crying and so did she, mum knew i couldn’t and wouldn’t take it. Although the tablets were enteric coated, mum spit them into quarters and I would pock the pill in a spoon of yogurt and swallow. I hated it, but i knew i was sick, and had to take them. I continued on Salazopirine for a year, then came 2012, my final year of primary school. I still wasn’t getting much better, so i was put on Imuran. They were smaller and I could take them easier.
In April my sister had a swimming competition ad mum was helping her get ready, dad was at work, so no one was there to split my pill in half. I had to take it, so i pocked the pill in yogurt and swalled, whole. I was terrified, but I did it for Amy, i was getting a lot of attention and no one even looked at her. I felt so sorry for her. I loved Amy so much, she drew me pictures while I was having MRI’s and blood tests. I was so grateful for her enthusiasm.
2013 bought on a new school and a new way of life. High school was very different from my primary school. As stressful as my first year of high school was, i felt good. This was a blank canvas and i could paint a new picture, not a picture of a sick little girl. Towars the end of 2013 I started blacking out. I didnt faint, my vision dissapered for a split second. Doctors thought it was my medication, so I was put on Meselazine, and with that came more scans. Amy drew me a beautiful picture of me in one of my scans, i have it on my desk. It showed me that she really cared about my health. Many months later, i was put on Meselazine enemas. they were unbearable, but i put up with them. They hurt me so much I would cry. Early 2014 i said enough, I couldnt bear the pain or the emarrasment any more. puberty was well underway and i wanted my own space. I stopped the enemas for 6 months, but another scope said I had bad imflamation in my lower large bowel. back on the enemas.
I have 3rd monthly blood tests for the imuran and in November 2014 i had low iron. not just low, very low. My levels were 8 and they were meant to be 50. I felt like it was all my fault, i had stopped the enemas and i had lost too much blood from it. I felt i was using all my parents money. I was stripping them bear. I kept at my medication as much as I hated it. I wanted it all to end, like it should. Another girl in my year was diagnosed with Crohn’s and she was so sick, I want her to know that i have had bad experiences too, but i dont know what to say.
Now it’s 2015 and in January i got suspected abcess. More meds and I felt awful. I had to take them at school and I would have to tell questioning people why. “Doctors think I have a hole in my bowel”. I know I must take good care of myself, especially after a friend of mine died from what i thought was bowel cancer, it turned out to be pancrease cancer. she was only 12 and was so beautiful. I want to stay well for her and to raise awareness of pancrease cancer in kids, even though it is extremely rare.
This sad event made me think of how lucky I am to be here and to live a busy life. with ballet, netball, drama and the school production. Im so lucky I am were i am now and I wouldnt be here if it wasnt for my family and friends. They support me every day and believe in whatever I do. Crohn’s has been a big part of my life since I was 10 and it will be forever just a little thing to live with.
One thing that I say to myself very often is ‘Enjoy Today’, because you don’t know what tomorrow will bring.
In ’99, after three years of vomiting and an inability to pretty much eat (well, keep it down), I was admitted to hospital with a mass in my stomach. The mass turned out to be a pocket of infection caused by actinomycoses – apparently 2-3 people in NZ suffer from each year. A few months after the mass was excised and with still no improvement, I needed a small bowel resection. They detected a presence of Crohn’s, but decided that it wasn’t enough to be concerned about – no medicines were even prescribed.
I was fine until a few years ago until I started experiencing upset stomachs – and at the time I blamed it on dodgy meals, or takeaways, or stress. My GP at the time wasn’t concerned and years went by with no tests – and therefore no results indicating Crohn’s – but my periods of illness became more frequent and of a longer and more intense nature.
I moved to Australia in 2008, and found that this undiagnosed illness was, rather usurpingly, having a rather detrimental effect on my life. Like the little things – like being reliable when it came to work shifts, socialising, eating – sometimes even having enough energy to get out bed.
In February 2010 I married my wife in NZ, and instead of the planned honeymoon which was to include travel around the South Island, I had a very intense attack days after the ceremony, which despite me trying to battle on, saw me spend the fortnight of my honeymoon admitted to Christchurch Hospital. Even heavily medicated, I found that on my return to Sydney I was unable to carry on with my job in hospitality. This job, even though flexible and only 20 hours a week, was proving far too physically demanding for me.
Fortunately I started to respond to the medicines I was prescribed and in August I felt strong and able enough to start a full time job as a photographer. However the ‘attacks’ kept coming and in November I was admitted to St Vincent’s Hospital in Sydney, and a few weeks later had my second bout of bowel surgery to remove a section that was affected by Crohn’s.
I’ve been lucky enough to have a fantastic wife and family, and to be looked after by incredible doctors – both here in Sydney and in NZ. Even though Crohn’s has kicked me around for the past few years, I still try to stay as active as I can – I’ve completed a 22 day Outward Bound course, completed two half-marathons and have even trekked to the Base Camp of Everest.
Amy Ruddick’s Story
Early experience inspires career choice
My name is Amy Ruddick and this is a brief personal story about my journey with Crohn’s disease over the last seven years. I hope this inspires further funding of IBD nurses.
I WAS 14 years old when I was diagnosed with Crohn’s disease. As a young teenager, my life took a turn as I very quickly deteriorated with all the classic symptoms of weight loss, diarrhoea, abdominal pain, cramps and bleeding. My GP assumed I had some form of gastro and sent me home with gastrolyte and told me to take the next day off school. My mum took me to the emergency department after she saw how much blood I was losing. After a week in hospital on IV prednisolone, a colonoscopy, two blood transfusions and various other medications, it was the paediatric nurses at my bedside that helped me and my family through the turmoil.
The diagnosis was shocking, relieving and confusing and raised many questions for the whole family. The nurses provided us with the support, education, the listening ear and understanding that we needed at such a fragile time. I now remember my first relapse as a turning point to come to terms with the illness we had never heard of. It was time to get to know how the disease works, how to treat it, and how to accommodate Crohn’s into our lives, rather than emphasising the pain, suffering and the things that I missed while being unwell.
After various other relapses, when I turned 17, I was too old for the paediatric ward. I was transferred to a general medical ward and no longer had the rapport my mother and I had built with the paediatric nurses. This was hard on mum and me during that time. The nurses were just as lovely and caring, though I know I would have greatly appreciated the option of having a specialist IBD nurse through my whole experience, helping me through my diagnosis, teenage and adolescence years, and helping mum with home-cooked meals, information on medications, activity tolerance and treatment options. To have an IBD specialist nurse that my mother or I could have contacted, with a greater knowledge base and the expertise we desired, such as ties in the community, would have assisted us through tough times. Having the chance to build a rapport with my mother, three sisters, my brother and I, as a family, with a dedicated IBD nurse who knew our personal values would have helped us with ways to accommodate Crohn’s into our lives.
I had already decided I was going to be a nurse before my diagnosis, through my battles living with Crohn’s disease has further strengthened my passion. I have just turned 21. I am in remission, and have been for the last two and a half years. I am currently completing my last year of university at Deakin, and am very excited about starting my career as a nurse. With my experience suffering a chronic illness through my teenage years, and the inspiring dedicated, compassionate nurses I have met, I am able to relate to my patients on a different level of understanding, and I strive to provide the same care that I received during my treatment.
I know CCA is supporting a push for government-funded IBD nurses, a cause I fully support. Having a nurse to support me through my future employment, travels, decisions about starting a family of my own, and whatever life brings me would be much appreciated. I intend to complete further research into Crohn’s disease after my degree, aiming to contribute to providing a better quality of life for people living with IBD. With my experience, passion and interest in the field, I may wish to become an IBD nurse specialist one day myself.