A Serendipitous Encounter

Ashleigh and Sophie discovered they had more in common with each other than just having ulcerative colitis.

Ashleigh’s Journey

Ashleigh was diagnosed with ulcerative colitis in early 2019 when she was 10 years old. I had known for a while something was not right, but it wasn’t until early 2019 that we became deeply concerned.

We had some tests done at our GP and were later contacted by John Hunter Hospital in Newcastle to have an appointment the next day with the head gastroenterologist. On arrival they mentioned they would have to do a colonoscopy as soon as possible to see if Ash had something called ulcerative colitis.

Whilst waiting for the colonoscopy, Ash’s health deteriorated. She was in so much pain all the time. She couldn’t attend school and was always needing to go to the toilet. She was rushed to receive the colonoscopy and we were told there was no doubt that she had ulcerative colitis. Ash went from never having had a tablet in her life, to having a pill box full of them. We spent many hours in and out of hospital, so she missed a lot of school and we changed medications many times. Every day was full of pain for her and tears for us all.

She couldn’t walk, let alone do the normal day to day activities children should be able to do.

Months passed only for all the medications to fail. Our next step was the “golden drug” infliximab, so the hospital visits started again, and her infusions began. But to our horror this still wasn’t working.

The next step was a drug called vedolizumab and we started these infusions before Christmas. And so far, this is the best my girl has been in over 12 months. We know that the prospect of a stoma is still there, and we have discussed this with Ashleigh, and she has an understanding of what this is about if we have to cross this path one day.

Sophie’s Journey

In April 2019, Sophie mentioned to me there was some blood in the toilet after doing a “number 2”. Being a typical mum, I said to her she was probably constipated and try drinking more water. A few weeks later l noticed she was having difficulty walking and she was complaining her knees were sore. I took her to a GP who ordered some tests, before the results came in she appeared to be getting worse and was very lethargic.

Off to hospital we went one Friday afternoon. Sophie was so scared that she cried for ten minutes in the car on the way to the hospital and then refused to get out of the car when we arrived. As she has never been sick, it was totally understandable that she was petrified.

The lovely gastro registrar, Lucy, came to see Sophie and instantly put her at ease. After being poked and prodded they decided Sophie would see the gastro doctors sometime during the next week. Over the weekend she became progressively worse. She spent all weekend lying on the lounge unable to get up, getting up several times in the middle of the night to use the bathroom, and she could hardly walk which we now know was because of inflammation in her joints. Sophie ended up being admitted the following Tuesday. The colonoscopy and gastroscopy the next day confirmed she had ulcerative colitis. After eight days in hospital

she cried for ten minutes in the car on the way to the hospital and then refused to get out of the car when we arrived. As she has never been sick, it was totally understandable that she was petrified.

The lovely gastro registrar, Lucy, came to see Sophie and instantly put her at ease. After being poked and prodded they decided Sophie would see the gastro doctors sometime during the next week. Over the weekend she became progressively worse. She spent all weekend lying on the lounge unable to get up, getting up several times in the middle of the night to use the bathroom, and she could hardly walk which we now know was because of inflammation in her joints.

Sophie ended up being admitted the following Tuesday. The colonoscopy and gastroscopy the next day confirmed she had ulcerative colitis. After eight days in hospital she was finally well enough to come home, just in time for her eleventh birthday.

The biggest struggle for Sophie has been the medications. In the beginning she would wake up inconsolable as she knew it was medication taking time again.

It has caused her (and our whole family!) a great deal of anxiety and most days she was late for school. After trying every different type of liquid and food you can imagine, she finally found what works for her and now she is a pro! Cost me a fortune in fresh raspberries – but I didn’t care. Now she takes all her medication with yoghurt.

Missing school and her friends has been hard on her, thank goodness for FaceTime. Sophie’s teachers and school friends have been absolutely amazing and supportive. Thankfully, since September 2019 she has remained well 99% of the time.

In January this year, she finally had enough money saved to buy her hand raised cockatiel, Buzz. Buzz has been a great companion for Sophie, she also takes him on adventures. Buzz has been to McDonald’s drive through and car rides with Barbie in the lounge room.

By chance, we happen to meet Leanne and Ashleigh! Both girls were diagnosed around the same time, they are the same age and then managed to have their last two infusions on the same day. They spent the day chatting, playing cards and comparing notes. The girls chat regularly sharing videos and stories about their hand raised birds, Buzz and Charlie.

A Family Unites

Georgia Richardson has been living with Crohn’s disease for 13 years and has become a stronger person for it with the help of her loved ones.

My first memory of my Crohn’s disease was when I was nine years old. I remember waking up for school and going to the bathroom. I remember wiping and all I saw was blood on the toilet paper and inside the toilet bowl. I ran to my parent’s room scared and ended up fainting twice.

After a few hospital visits, and being sent home because we were told it was only gastro, the final diagnosis was first UC, however I then later came to be diagnosed with Crohn’s when I was 13 years old. My experience with Crohn’s was difficult, scary and anxiety-ridden. Being so young I was unable to understand what was going on and why my body was going through this.

My body was also the type to be put onto medication and have It only last six to nine months roughly or not at all before having to change and try something new. I was given a plethora of medications to try, and experienced multiple flare-ups. It wasn’t until I changed hospitals to the Royal Children’s Hospital and was taken off everything and put on a medication called Methotrexate, taken via injection every week, that I started to improve.

For the first time this medication meant I could get out of bed, I could go to school, I could go out and see friends or play sport. I was no longer having to miss out on doing those things. This medication however did not come without limitations. Unfortunately I began to get major side effects including nausea, shortness of breath, vomiting and confusion amongst others, which would last for at least two days. I was on this medication for seven years. For a while I could tolerate the side effects because it meant getting to do the things I loved again, but in the last two years of being on this medication the side effects caught up to me, and I began to relapse. So I asked to change. I was put on a medication known as Stelara and for the first time ever I am on a medication that currently works and does not give me a single side effect.

Family

The impact on myself definitely affected my mental health. I became anxious and didn’t want to leave the house, and when I did leave, I didn’t like to go very far. I always needed to know where the nearest bathroom or hospital was, both things I still do to this day especially when travelling to places I don’t know.

It has taken me a long time to be able to build back my mental strength, and I am now able to trust that I’m ok and can get through those anxious moments. My family and partner are my biggest supporters, and I am forever grateful to have such a support system. They have sat by me through every step of my Crohn’s and my mental health, but I also know that my health was not easy on them. I know that they were constantly worrying, constantly trying to figure out how to help and even had to miss out on things themselves. I believe having

Crohn’s was a learning curve for us all.

I feel like the people in my life do understand my Crohn’s to a large extent. They see what I go through, and they always try to support me the best they can and help out in any way they can. However I do believe that IBD is not an easy disease to understand, especially considering that every individual goes through different experiences with the disease. So unless you go through it yourself, there’s no way to fully understand it.

Where I’m at now

Currently I am in a good state Crohn’swise. It is back to being stable and under control, so I’m able to work, see friends, do things with my family, do things with my partner. Day to day however I do still have to take it easy sometimes. My body doesn’t always respond the same, I get tired a lot, I get sore muscles and joints, I get sick easily due to my immune system not being great, and I have IBS, which causes me the most stress. However, all of these are very much manageable and I have learnt / am still learning how to better take of my body.

My biggest focus is trying to find food that makes me feel good and making those kinds of lifestyle changes.

The biggest thing I have learnt about myself is that I am a lot stronger than I thought I was. Managing IBD takes a lot out of you at times and, I remember moments where I would feel so low because I was in pain all the time. But I also realised that no matter what I got through it, and it has made me a lot stronger.

The best way I try to care for myself on bad days is usually to rest up. It’s one of the biggest things you can do for your body when you have days that are hard and you feel like you don’t have much energy.

The advice I would give to others trying to manage and figure out Crohn’s and colitis, and something I had to really learn and still am learning, is to listen to your body as it will tell you what it needs, whether that be extra rest or a more chilled out day. Don’t be hard on yourself for the things you can’t do. It’s ok to focus on you and allow yourself the time to heal.

Making the most of everyday

After a turbulent Crohn’s disease diagnosis, Sara Ferola realised how important it is to raise awareness of IBD and has become an avid advocate and fundraiser.

In 2017, I gave birth to my second child, a little boy. Ever since having my second child I knew something was not quite right. I was constantly sick with colds, flus and then in 2018 developed a cough that just would not go away. I remember telling my husband it was not a normal cough. I felt like my chest was always cold, there was always a lump feeling in my throat and a feeling like I was out of breath. Before all this, I was diagnosed with coeliac disease in 2009 which had been very well managed, so when I started feeling stomach pains again my doctors kept saying it was the endless amounts of antibiotics I had taken over the past two years or so.

Time went on and I just kept feeling worse. By the end of 2019 I was at my worst. I had debilitating stomach pains all the time, started going to the toilet more than 10 times a day, and had excruciating bottom pain that became so bad it felt like I was passing glass each time I went to the toilet. Still, after going to emergency twice at two different hospitals, I got sent home and was told it was IBS, fissures, gastro or anxiety. It was around Christmas 2019 when my life was hell. I had two kids under four, had a business to run, was going through some personal stresses and became completely incontinent. I was trying to keep life as normal as possible but I could barely get out of the bed to read my children a story. Still, doctors and specialists were telling me it was stress and I had to find ways to calm down.

This only made me more stressed as I knew deep down what I was feeling was not normal. I was always in pain, my bottom was painful and swollen, I always had stomach acid and reflux, a terrible cough that made me feel like I could not breath, weight loss, and was repeatedly getting dismissed. I hate that I felt like

I had to question myself and started to believe people that nothing was wrong. I even got asked by one doctor if I was taking laxatives to lose weight.

I then started seeing scary amounts of blood in the toilet and knew something had to be done. I went back to the specialist and demanded a colonoscopy after he told me on two other occasions it was not necessary. It was after this that they found I had severe perianal Crohn’s disease that had also inflamed my entire esophagus which explained the ongoing cough I had for over a year.

I was then sent to see a specialist that specialises in Crohn’s. I was put straight on steroids and some medication to manage my Crohn’s. After not finding much success with this specialist I started to look for and found a top specialist in Melbourne. He also tried some more oral medication, but we found nothing was working and after several months of no change and not being able to come off steroids or hold solid food down, and constant excruciating pain, he admitted me to hospital. Emotionally and physically, I was at my worst, so the specialist suggested we look at starting a biologic treatment (Stelara). I was desperate for relief at this point and agreed.

I started the treatment in late June 2020 and found it did not work in any great hurry, so I spent all of 2020 in constant pain and unable to come off steroids, which in itself caused a list of their own problems. I also had five colonoscopies in 12 months and by February 2021 I finally started to see some hope in Stelara. After 11 months on Stelara, I am finally off steroids (yay) but still have to watch what I eat. After being on a liquid diet for six months (from May-November 2020) re-introducing foods has been difficult and currently I have not been able to re-introduce sugar, fruit, red meat and some vegetables. But after the pain I was in last year I am thankful I now have days where I can get up and start doing normal activities like working and running around after my two kids.

Family Adjustments

When I was first diagnosed, I was very angry and found it hard to accept the diagnosis.  My anxiety hit an all-time high, so much so that even staying at home by myself became impossible. Mentally I was in a dark place. I was no longer able to perform simple tasks like taking a shower without being curled over in pain and it made me feel like I was living to watch everyone else live.

The impact on my kids, three- and fiveyears old, broke my heart because if felt like they did not remember me well. My three-year-old especially as I have been unwell since just after he was born. It became normal to sit with me in bed or on the couch because these were the only activities I could physically do with them. I was in so much pain for the first six months after being diagnosed that I could not even look after my own kids without help.

My husband found it really hard, and while he does not talk very much about his emotions, I saw the toll it took on him too. He was taking time off to help me with the kids and many of his friends, at first, did not understand why he too had to give up social outings to stay at home when I was home to look after the kids. I even saw him start smoking again after five years of giving up, which he says was because of the stress.Everyday Extras The fallout from Crohn’s has made me do a complete overhaul of how I manage commitments to be honest. I now make sure first and foremost that I have enough energy to do everything my kids need from me and then whatever energy I have left over I can give to other things and other people. Some days that means I can make dinner for a family birthday while other days I barley have enough energy left to take a shower.

At first, I felt bad and worried about what everyone else might think of me when I had to cancel plans and if they found it rude. But now I have a very strong awareness of what my body can and can’t do. I now believe that people who are your true supporters will understand and be there when you are ok.

Food has also impacted my symptoms dramatically, so for the first six months I had a limited diet of bone broth, fish, potatoes and sweet potatoes. Only in the last few months have I started to reintroduce some foods and even then, I still struggle with so much:

1. Eating out – I have to call and research everywhere I go
2. Making sure there are always toilets around
3. Making sure I carry wipes as toilet paper is unusable on my perianal Crohn’s
4. Cooking two meals most nights (one for me and one for the family)
5. Working through severe fatigue most days
6. Side effects of medications
7. Bearing the emotional burden

What Lies Ahead

Personally, I am much calmer and positive about managing Crohn’s these days. While I don’t know what journey my Crohn’s will take me on, I still set goals for myself each year and don’t waste my good days. There are of course certain things like having more

children (which I had not completely decided on) but now due to my illness has been decided for me. I know some things I may not be able to do, but my view is to not harp on about what I can’t do and focus more on what I can do. One positive is being able to now educate people on IBD, something I knew very little about, and build my business.

Because I have my own business and work at homes most days, I chose not to tell any of my clients at first as I was worried about the impact it would have on my business. Now that I am more accepting of my illness and my journey I have been very open with people who ask. I still however find I downplay my bad days.

I feel like the closest people to me understand as much as they can, but I feel like I am alone at times, as it is very hard for most people to understand being in some form of pain every day. I have had a lot of people tell me lately that I look better, and in turn have stopped asking how I am because on the outside I look ok. But honestly, I can’t remember the last time I woke up without pain or symptoms to manage in that day, and that’s a hard thing for anyone to wrap their head around if they have not experienced a chronic illness.

I decided to fundraise to tackle the lack of awareness of IBD. When I was diagnosed there was almost no one I told that knew what it was. I saw firsthand how debilitating this illness can be. A lot of people still put it in the same category as IBS, not to mention how dismissive some doctors can be which leads to delays in diagnosis and have serious implications for people’s health and wellbeing.

A New Normal

Having IBD, our bodies go through so much and learning to truly appreciate and care for yourself, that has been my biggest lesson. When I was diagnosed, I spent so long being angry at my body, upset at the weight fluctuation, angry at what I could not do, anxious at the amount of medication I had to take because my body could not do it on its own; but all that ever did was get me further and further into a rut. Through learning self-love (and I am still learning) I find I am calmer and more loving towards my body and in turn the stress from the hate I used to have has gone. That alone has been a huge game changer for my anxiety.

I make sure I start every day practicing gratitude and yoga. I make sure I also eat clean every day, however on really bad days, I pull it right back and make some homemade bone broth and drink it each day. I have also learnt when I have to say no to things and clear some days for me to stay home and rest my body.

Stop worrying about what tomorrow will bring. Deal with your symptoms for today, be gentle with yourself as you are doing the best you can. This is something I learnt off someone that had overcome cancer. She said to me if you spend every day worrying about what your illness could do, you will never enjoy the wins. But if you learn to wake up and only deal with the symptoms you feel today, you have smaller hurdles to jump. She taught me to learn to be present and enjoy the better days.

Sara Ferola raised an incredible $6,030 during Awareness Month. Thank you for your amazing efforts Sara!

Harrison’s Fearless Supporters

Since Harrison’s diagnosis with Crohn’s disease, his family and friends have raised close to $10,000 for the Live Fearless Challenge. We talk to Harrison’s mum, Jayne, about the campaign’s success, as well as her experience of caring for someone with Crohn’s.

Tell us About Harrison – aka Haytch – and how, as a carer of someone with an IBD, his diagnosis has affected both him and your family.

Before his Crohn’s disease diagnosis at the age of 22, Harrison was an apprentice greenskeeper at our local bowling club in Sunbury. Within one month of getting his job, he started having trouble with fistulas. After six months of surgeries and trying to continue to work, it all became too much and Harrison was let go of his job.

Growing up, Harrison was very fit and enjoyed going out with his friends and loved playing basketball. Today, his only recreational activity is riding his Harley Davidson motorbike, whenever he feels well enough. His friends include him in every ride they go on and it makes him feel normal and free from his illness.

Walking off my troubles

Justan Singh rediscovers his passion for fitness and wellbeing.

I remember sitting in the doctor’s office, I was about eight years old, my dad and the doctor were talking and I couldn’t understand what they were saying. All I wanted was the pain to go away. The doctor turned to me and told me I was going to be on medications for the rest of my life, that I had Crohn’s disease and that it was incurable. The pain I felt was something I would have to face continually throughout my life. At that moment I didn’t know what to do and all I wanted was a normal life; a normal life playing with other kids. It felt like the rug had been pulled out from under me.

I hated taking the medications and they all tasted terrible. They became stronger and stronger as the years went by. Surgeries then entered the picture for perianal fistulas. One of the activities I really enjoyed when I was a kid was bike riding and because of these fistulas I was forced to stop because it was too painful to sit on the seat. I ended up giving up on sports or doing anything physical because I would have a lot of bleeding in my underwear as a result of the constant removal of fistulas. It reached a point where I was using tampons because there was so much blood. Not a lot of people knew that about me

By coincidence, it was around the same time that COVID-19 entered the picture that I had begun to reignite my interest in physical fitness as well as general wellbeing. Previously, I had always associated exercise with pain but because of the support and inspiration from a good friend and mentor, I began to understand it differently. He showed me that health and fitness were not as hard as I thought, and that by doing simple exercises and looking after my diet, I could significantly improve my overall health. From that moment onwards, reaching remission was easier.

I started going to the gym, which I hated before, but fell in love with. I embraced a new life that valued health and fitness.

The first day I walked down to the shops, which were about two minutes away. I was out of breath after because my cardio fitness just didn’t exist. The next day I walked to the park which was a few minutes further away than the shops and became out of breath again. I wasn’t that impressed with myself, so I thought if I slept better and drank more water I could go further. The day after that, I charged myself with walking 45 minutes to the main road but once I was there I realised I could see a friend’s house on the horizon. I told myself I might as well just walk all the way there and he could give me a lift home. It took about another hour to get there and I called him but he didn’t pick up and my heart sunk. All I could do was to make the decision to walk back, which I did slowly to conserve the little energy I had left.

When I got home I was pretty pleased with myself and began to think walking was alright. I felt like I had conquered that impulsive trek and found myself motivated to push myself more. I became addicted to it. Often, I was alone with my thoughts. I was able to reflect on myself and past events.

I was completing five-hour walks and after burning all those calories I felt I deserved a reward in the shape of a burger. Part of me wanted to prove that you can lose weight and still eat burgers (however, I wouldn’t recommend it).

When Crohn’s and Colitis Awareness Month was approaching this year, I felt like setting a crazy goal like the Bondi to Manly walk, which is about 80km or a two-day hike via the coast, but I wasn’t sure yet when I would do it. One day, after a long walk at Bondi beach, I arrived back home and received an unpleasant message that upset me. I suddenly couldn’t bear to be at home. Everyone was in lockdown but I needed to go for one of my walks.

It was about 7pm and I drove back to Bondi beach, I left my car there and headed up the Bondi road to Sydney. I told myself I’ll just walk to the Sydney Harbour Bridge then back. I walked and walked until my feet were sore but surprised myself with how easily I managed it. I spent some time in the city taking in the sites and then thought, why don’t I make my way north to Cremorne, go to McDonald’s and have an icecream and then I can return to my car at Bondi. When I reached my destination, I posted a photo on Instagram, had that ice-cream then started walking back. I arrived back at my car at 3am and drove home to bed. There ended my epic walk and now I’m looking for a new challenge.

Creating a brighter world

Sarah Starkey advocates for body positivity while leading by example

The beginning

In 1998 at the age of 13 I was diagnosed with ulcerative colitis. This was a very difficult time in my life as I was trying to navigate puberty, my first year of high school, a diagnosis of an incurable disease and how to record songs off the radio. Life sure was challenging for a while.

I remember receiving my diagnosis and feeling a sense of relief, as I finally knew what was wrong with my body. My teenage years were hard at times. I had students at my school not knowing why I looked different (effects from steroids) or why I took so many days off school. I just focused on me, my schooling and what I had to do to get through each flare. Most girls my age were worried about their hair, boys and what to do on the weekends. 

During high school I had multiple admissions into hospital to try and place my disease into remission. A memorable admission for me was when I was just about to turn 15. I had an experience with a not so nice nurse who commented on my weight from steroids. From this moment on I told myself I would be a nurse – and a nice one, who would always be the best advocate for her patients. Fast-forward 21 years, I am a palliative care nurse consultant working in the largest palliative care service in South Australia. I love being a nurse. It is one of my true passions in life.

Reflecting on my early years in my diagnosis, I did try and make the most of my good days.

I was incredibly lucky growing up to have such supportive parents, siblings, family and friends.

I remember my parents saying to me,

“This is what you have been diagnosed with, let’s move on and deal with it.” I truly have applied this to many other situations in my life. I also passed this message onto my little sister Georgia who was diagnosed with UC a few years ago. I remember saying to her, “You got this girl, this is what you’re dealing with and you will get through it.”

I like to think that I have been a role model for her in helping her manage her disease and raise IBD awareness in her community.

Suzie

At the age of 24 my bowel completely stopped functioning. The poor old girl had given up. Strictures and adhesions had gotten the better of me after living with IBD for 11 years.

On 16 September 2009, I met the love of my life: Suzie, my ileostomy. My husband Tom laughs every time I say that. The original plan was to have J-Pouch surgery, however after complications during surgery I had a total colectomy with an end ileostomy. I had a complete proctectomy in March of 2010 after having precancerous cells in my rectum. Recovery came with its challenges, but it was all worth it and I pride myself on being tough.

After my bowel was removed and tested, my diagnosis changed to Crohn’s disease, or what they call indeterminate Crohn’s and colitis. To me it honestly didn’t matter, I know my treatment wouldn’t have changed and the outcome for me was the best outcome.

Suzie is named after my stoma nurse Susan. I chose to name my stoma to help people feel more comfortable seeing my life change and to make an uncomfortable topic (for some) easier to manage and talk about. Each year Suzie and I celebrate our stomaversary with cake and balloons surrounded by our nearest and dearest.

When Suzie was born, I finally got the life I deserved. I have travelled the world, I have completed post graduate studies, I had an amazing wedding, I exercise, I have partied to my heart’s content. You name it, I have done it.

I often get asked if you could have a reversal of your stoma, would you? For me, I finally have control over my life. I have control over what I can and can’t eat without getting sick, I have control over when I need to go to the bathroom, I can travel freely – there is honestly so much more that I can do now living with a stoma.

Despite having my bowel removed and being in remission from my disease, I am still reminded every single day of my illness. I do experience fatigue; I have other health issues such as arthritis which is linked with my Crohn’s disease. I will forever be cautious about my health.

Unfortunately, I am currently experiencing fertility issues due to scar tissue and adhesions from previous surgeries. Pelvic surgery can often cause blocked fallopian tubes. My husband and I knew this process was going to be difficult and had prepared ourselves. We have been undergoing IVF treatment since February 2021. We were grateful to experience pregnancy after an embryo transfer in June 2021, however we miscarried at seven weeks. There isn’t a day that goes by that we don’t think about our baby. I have shared our journey by recording a podcast. Writing a poem has also helped us with the grieving process. You can find my open poem on my Instagram account (@saarrzzy).

Empowerment and awareness

I am a huge advocate for body positivity, empowering and inspiring others in their own journeys, whether that be IBD, IVF or miscarriage awareness.

Being diagnosed in the late 1990s, I found that there was very little accessible information and support was limited, so as a teenager I navigated my own path. I really must thank my beautiful husband for truly empowering me to show Suzie to the world. I was always able to do this with friends and people I had recently met, but I never felt comfortable sharing her on a larger scale.

I have since been able to help so many people globally through my social media accounts. Including founding a Facebook support group called “Trust your gut. IBD Warriors of South Australia”.

I established the group after this year’s World IBD Day, where I had arranged a group of fellow IBD warriors to head to Adelaide Oval, where the stadium had been lit up purple. It got me thinking about starting up my own support group that wasn’t so clinical, and one aimed at the younger (and young at heart) generation. It’s time for me to give people the support that I wish I had all those years ago. I wanted to give a voice to those who may not have the courage or support behind them. We now have close to 50 members and have regular get togethers. I am proud of what this group has achieved. 

Because of this disease I am a stronger person. Because of this disease I am a nurse. Because of this disease I have been fortunate to help sufferers not only locally but all over the world by sharing my journey, offering my support and empowering people to be comfortable in their own skin. Because of this disease I have Suzie. Suzie gave me the life I deserve and reminds me every day how strong and brave I am.

Seven Marathons, Seven Days!

Laura Firth runs the marathon of chronic illness while living life to the fullest.

Sometimes I sit and reflect on my life and ask myself, do I remember a time before I felt no pain, had to take daily medication and endure endless hospital appointments, which continually resulted in surgeries and always searching for the nearest toilet? No, I do not. So, here is my story: how it all began and how I manage to get through each day.

I have lost count of all my surgeries and continually saying to myself, “This must be the last one!” I am pretty sure that every time you get put under anaesthetic it kills brain cells. This is not a fact, but would explain a lot.

First diagnosis

I first got symptoms when I was serving in Iraq. I was tired all the time, losing blood and always on the toilet. I was in denial of being ill, so much so that after months passed and I was out exercising, all I remember was waking up in hospital. This was the start of my journey. After what seemed like endless testing, I was finally diagnosed with UC. From there, I was prescribed steroids and sent on my way. This treatment was unsuccessful, so the specialist prescribed me more and more drugs, then injections, and still nothing. The continual change in medication went on for a few years.

It started to affect my career, as no one knew what to do with me. In 2006, I met my future husband, who soon became my rock. He was by my side through all the operations and appointments, stopping the car every 10 minutes to find a toilet! He really is my everything, but do not let him know that!

Things started to get even worse when I was pregnant with my daughter in 2007. I was constantly bleeding and going to the toilet 30+ times a day; I had to make a bed up in the toilet. The fight was on, but needless to say, it was only the beginning.

Battling adversity

Just before my daughter’s first birthday, I was rushed to hospital and what was more worrying was there were no more drugs to try. My large intestine was incredibly ulcerated and had to be removed! I remember the nurse talking about a bag. My thought was “No way! Isn’t a bag for old people?” I was only 26 and not ready for this. My hubby was serving in Afghanistan at the time, and I could not go for surgery without talking to him. So within 24 hours he was by my side telling me it would be ok. The surgery was very long, and I just remember all the drains and tubes and then the bag! With so much pain, I was connected to a morphine drip, but found out I was allergic to this. Throughout this entire process, I knew I had to stay strong and fight for my family. There were some incredibly low, dark days, but my hubby always made sure I was laughing. The best kind of medicine. A year later, I was due to go into hospital to get a J-Pouch, but I was pregnant with my second baby. So, we put the operation off; the pregnancy went better than the first one, which was good.

Then it was all gone, woohoo I was so elated that the J-Pouch was coming, no more bag oooohhh yes! It was magical for a small while, but then came the fistulas, the pain, the days of being unable to get up. I lost so much weight (25kg) and had to be continually readmitted back into hospital, not a life for a mum with two small kids and a fly-in-fly-out husband. I remember one operation, where I had lost so much weight; I was so weak and I woke up with no pipes or tubes, so I tried to go to the toilet and just collapsed.

My husband had to hold me up and shower me. This was not a life, and I was in incredible pain. We then decided to have a temporary bag again and rest the J-Pouch, but I still could not get my head around a bag for the rest of my life. So, one last try with the J-Pouch, my body just said no! I had more fistulas and more camera tests, resulting in a diagnosis of Crohn’s disease as well as UC. It came to the point I could no longer walk 100m without stopping, as the pain was too much. No drugs were working, and the pain was totally unbearable. Enough was enough!

Back on track

In 2017, I gave into the disease, it had won! I had to be able to be a mother to my kids as they were growing so fast. I tried doing everything for them and reflecting back, it’s amazing how much you can hide when in pain. So, the bag was back, I had a mind shift and was determined to make this work; it was time to get our lives back, time to get my life back and time to make a difference. Time to step up! With the children, I started to run, we had a reason to run and together we ran 12km to raise awareness for Crohn’s and colitis. Spreading the word and running was something I felt I could do.

In 2019, I decided it was time to run my first marathon. I found Braveheart’s, a charity that helps sexually abused kids, so I signed up. Race day was awesome, and I completed 42.2km. After finishing, it took my body about 10 minutes for the insides to settle, just trying not to throw up. It was nasty, but it was the beginning of something else. I met some incredible runners, who I wanted to join again in 2020.

After this, I did a 24-hour race, never say you can’t! Never let a disease define you. I covered 160km and still wanted to run more. So, in 2020, I signed up for seven marathons in seven days in seven states for Braveheart’s, however COVID-19 hit and I had to go virtual, so I ended up doing four marathons and three halves, as I had to play mum also, while hubby was away with work. The body was good, and I was changing a bag daily. I had accepted the bag as life now. I was still having leaks and sometimes skin got so sore, but nothing compares to the early days.

Final Thoughts

My advice is this: if you are in a similar position, get a bag now! Putting it off is putting off your quality of life. I am now living and doing things I want to do. Don’t get me wrong, I still get paranoid that you can see it under my clothes, but now I open up to people, as so many people don’t know about Crohn’s, colitis or ileostomy. My family are incredible and have stood by my side through it all.

However, my story isn’t finished as I will have the J-Pouch removed this month. I understand that there isn’t yet a cure for Crohn’s and colitis, but we can continue to spread the word: you can do the things you love and there is a light through all the darkness. So please, stay strong because you can!

A Time Of Transition

Jasmine Gibson is living fearlessly and won’t allow Crohn’s disease to dictate her life.

Imagine you’re 17 and the next stage of your life is just getting started. You are in your senior year of high school, your friends are planning schoolies and endof-year parties and cramming for exams, but you’re not doing any of that because all your energy is being consumed by an illness. That was what happened to me during that crazy time when I was diagnosed with Crohn’s disease in October 2019.

It was at the beginning of year 11 that I began to feel really sick. I visited multiple doctors but all of them told me that what I was feeling was just caused by stress or a stomach bug and they sent me home without any answers. My health wasn’t getting any better so I kept at it until finally a doctor noticed that something wasn’t quite right. I was sent off for several different tests to find out the cause of my ‘mysterious’ illness.

After months of faecal tests, blood tests, colonoscopies, and many doctors visits, we finally found that I had Crohn’s. At that point it was the middle of my senior year and I had lost all sense of who I was anymore. I ended up missing 50% of my senior year of high school while I was bedbound because of the pain and it felt like there was no doctor that could make me feel better.

Even though I was 17, I could not go out with friends due to a strict diet and constant dizziness and nausea. I was behind in my studies and unable to play sports or drive. I had to find my new limits and redefine who I was as a person. This was not easy and took months and months of confusion, loneliness and bitter anger.

When I was with my friends the feelings were worse because of my constant absence. I was unknowingly but constantly left out of inside jokes, secrets and stories. And when I was there it was hard to focus on conversations due to fatigue and pain, so I sat there like a doll and smiled. I do not blame my friends for this because they knew I had Crohn’s and tried to be supportive and treated me like they normally would which is what I wanted, but it’s hard to be treated like nothing’s wrong when there is.

The hardest thing I found was that no one understood what I was going through. My parents tried but when you have never gone through it it’s hard to understand the exact difficulty of simple things, like getting out of bed, focusing in class, or trying to motivate yourself to study when all you want to do is sleep.

I remember the first time I had to tell people about Crohn’s disease were to my friends at school. It was difficult as I struggled to put how impactful the diagnosis was into words and there was this fear of how my friends would react. I remember describing the disease and what it did, then trying to explain how it affected me. My high school friend’s reaction was not anything big; mainly questions about Crohn’s, that at the time I did not know the answer to, but my explanation clarified my constant absences and weird behaviour that I had been displaying for the last couple of months.

The scariest thing for me when moving to university was leaving my home, parents, friends and support networks to live six hours away on my own. Having to cook, clean, study and live a balanced life made me afraid I would get a bad flare up but for me not going to university was not an option. Ever since I was a child, I was determined to go to university. It was that goal that kept me going every day I was sick. It got me out of bed to study, go to school and do my assignments and was the reason I taught myself to manage my stress and look after myself.

Starting my fitness journey

In 2016, I went on the Great Wall Challenge for CCA and during this process I got fit, lost over 10kgs and got my BMI down from 34 to 29 in one year. I have continued my fitness training since then as I found the benefits of increased energy and a decrease of my other symptoms, such as pain, outweighed the monetary cost of a personal trainer. I also really believe that the training taught me about mental strength as much as it did about physical strength. I really took notice of what I could tolerate (such as pain) and used goal setting skills and confidence brought on experience cheering them all on and I was inspired by them to continue participating in triathlon events.

“I may have ups and downs with my Crohn’s but I look for things that I can achieve to take back some of the control over my life.”

It is now two years since I started training, and although I have active Crohn’s disease, I still feel quite well.I participated in the run as part of CCA’s Live Fearless Challenge which I can’t ever imagine myself doing before taking up the fitness training in 2016. I have also recently completed the 10km run at the Gold Coast Marathon festival and the 5km run at the Sunshine Coast Marathon festival over the past four months.

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Marnie O’Brien had a crash course in Crohn’s disease while completing year 12, but she has since managed to take back control of her life through fierce determination and commitment to the IBD community.

If you asked me about Crohn’s disease ten years ago I would have stared back at you with a blank expression and asked “what’s that?”

When you google Crohn’s disease, it might tell you that symptoms will include: diarrhoea, fever, fatigue, weight loss, abdominal pain and cramping, skin and joint inflammation.

What it doesn’t tell you is that you’ll experience anxiety about planning any kind of social situation because you don’t know how your body is going to be on any given day. It doesn’t tell you that if you have plans to go out one evening, you have to meticulously plan what you eat for the entire day so you won’t be rushing to the bathroom all night. It doesn’t tell you that you might have to alter your whole diet to avoid your trigger foods, only to have safe foods sporadically decide they’re going to trigger you out of nowhere. It doesn’t tell you that you’ll constantly battle with low self-esteem because this disease has literally pulled you apart.

And it doesn’t tell you that if you speak to someone that’s possibly heard of Crohn’s before, they’ll magically have this amazing thing that you have to try because it will definitely help your symptoms!

 It was in 2009 that I started getting horrendous stomach pains out of nowhere, sometimes after I ate too much food, other times they would wake me in the night and would have me in the foetal position. I ignored them for months and simply hoped they would go away eventually. It was around the middle of that year that I missed a few days of school because of what I thought was the flu. I had a persistent sore throat, no appetite and no energy. I went to the doctor for the first time in six years and was told to go straight to the emergency department as I was terribly anaemic and dehydrated.

During my 10 days in hospital my weight dropped from 48kg to 40kg as my body tried to heal and cope with the liquid diet I was given. A day before I was released, I was allowed to have solid food and feeling it digest is the most uncomfortable and strange sensation I have ever experienced.

During the year following my surgery, I participated in a study looking at treatment in the first year after surgery and what benefits particular drugs and regular colonoscopies can have for remission. This study was a great success and saw Humira subsidised by the government (prior to this, each injection could set you back about $4000). I have completed numerous surveys about diet, mental health, family history, and environment. I have taken more immune suppressants than I can count and had more blood tests and colonoscopies than anyone would want.

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.

Taylor’s story

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.

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.

Tracey’s story

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.

Shifting Focus

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.

Active Advocate

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Meg and I

Meg’s partner, Rod, shares a little about what this beautiful soul meant to him and how they always stood by each other.

Meg and I first met by phone when she called me at work on 5 December 1998 to try and coax me into an interview with the company she worked at (we were at rival companies). Meg was very convincing, so I took the interview and ultimately took the job. Meg and I met for the first time in person mid-February 1999, and on 16 July that year we met at the Stoke House in St Kilda for dinner.

We were inseparable from that date on. We moved in together two months later and added our darling little puppy, Pinkachu, to our little family. In those days, Meg’s doctors had diagnosed her as having ulcerative colitis. It was as under control as it could be back then, and gave us both very few issues apart from the occasional flare up. We spent the turn of the century with friends in Fiji. Life was good.

 In early 2002, Meg’s flare ups were starting to be more frequent and more severe. We had many, many meetings with the doctor at Cabrini Hospital and various treatments were tried on Meg. Again, it seemed to be getting under control but as time went on it returned with a vengeance. These were the darkest of times for us as it seemed there was no end in sight. Meg was becoming more and more stressed, which of course made it worse. She was put through extensive tests and rediagnosed as having Crohn’s disease. As time went by Meg spent her days either lying in bed in pain or sitting on the toilet, sometimes for many hours on end. In 2005, Meg developed what we now know to be pyoderma which would eat away at her left foot and kept her in hospital for a few months. They were doing general anesthetic surgery every second day to clean out the wounds on her foot, only to find it would get worse every time. Then came the day that they were unable to revive Meg on the table due to a massive fluid buildup around her heart. I had to race to the hospital to sign for them to do open heart surgery immediately to save her life. That was a very trying time for both of us, but Meg came through it and fought hard to get her health back.

Once the doctor was able to diagnose it as pyoderma, they then were able to use the correct medications for her to combat it. But life was still an ongoing battle for us and I put my own life on hold to look after Meg. When I wasn’t at work, I was Meg’s fulltime live-in nurse doing everything from wound dressings to helping Meg change her clothes. Changing Meg’s linen for her was almost daily and washing all her clothing and linen that got soiled was also a daily event. It was a terrible time for Meg and I felt helpless.

Meg’s longtime girlfriend Justine was probably the only person we knew who stuck by us through the hard times. Justine brought a sense of normality to Meg’s life which was priceless. In 2008, Meg was down to 43kg, there was nothing of her. Finally, Meg agreed to have an ileostomy and her health immediately started to improve. This time in Cabrini she was there for nearly four months – this was by far her longest stay in hospital. After this Meg’s lifestyle improved dramatically and her recovered health was able to give her back her life was priceless.

In 2008, Meg was down to 43kg, there was nothing of her. Finally, Meg agreed to have an ileostomy and her health immediately started to improve. This time in Cabrini she was there for nearly four months – this was by far her longest stay in hospital. After this Meg’s lifestyle improved dramatically and her recovered health was able to give her back her life.

Meg took on the role of facilitator for the Crohn’s & Colitis Australia support group in Mt Waverley where she and I met many lifelong friends and we all became part of a support network for each other (to this day, Julie keeps an eye out for me as time goes on). To see Meg doing this was such a wonderful thing. Meg had a purpose and something she loved doing which kept her occupied not just on meeting nights, but every day and evening talking to people and giving them support over the phone. I was so fiercely proud of her and what she was achieving. It was very inspiring.

On Christmas Eve, we drove to work together and there was the usual conversations and laughter on the way in. Meg was excited for Christmas as we were hosting it for the first time at our home and Meg had bought everything we needed to cook up a storm. It was going to be a great Christmas. As Meg was heading home after dropping me off, she hugged me and said, “I love you dearly Rodney David.” I replied, “I love you too Megan Jane.” Then we kissed and she was off waving out the window as she left. That was our usual goodbye

At 5pm when she failed to arrive to pick me up, I rang her mobile but she didn’t answer. Over the next 20 minutes I called her mobile and our home number several times but no response. I had a vehicle at work I could use so I left a message on her phone saying that if she was on her way, turn around I’m driving myself home. I got home and Meg’s car was in the garage. I went inside and found Meg asleep in bed, I’ve seen this many times before. I tried to wake her and realised I couldn’t, she’d passed away in her sleep during the day. Paramedics arrived immediately as I tried to revive her and they took over my efforts. But it was too late, we could do nothing, she was gone.

The hole in my life now is very real and unrecoverable. I miss Meg every minute of every day. Meg is the love of my life, and I will see her again someday. But in the meantime, it hurts like nothing I’ve ever known in my life. Meg was just the perfect lady; she was personable and it seemed everyone she met immediately loved her. I’d like to thank Justine and Julie for their care of Meg over the years, and to this day Justine still keeps in touch with me weekly to make sure I’m okay.

If you are feeling concerned about your personal wellbeing and want to speak to someone about Crohn’s disease or ulcerative colitis, call our helpline on 1800 138 029.

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