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.

Live Fearless Challenge I have always wanted to get involved with anything that is related to Crohn’s and UC, and so when I came across the Live Fearless Challenge online one day, I decided to get involved. I also got my family involved, both immediate and extended.

Doing this challenge was my way of showing myself how far I have come and doing it for those who aren’t able to just yet.

That my family supported me with the challenge was amazing, even more so because they got involved. The first year of doing the challenge was the hardest, during the big lockdown in Melbourne and struggling with my irritable bowel syndrome (IBS) and mental health. Having my family do the challenge with me kept me going. I knew that I wanted to finish it the best I could while also not being hard on myself if I had days where I just couldn’t do it and needed to rest.

Having such a big group in the challenge really helped to get our group out there and raise money for the cause. Everyone did such a great job in helping to raise money and reach the distance goals. Having someone to walk with or ride with made all the difference and gave me extra motivation.

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.

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.

To watch your son go from being healthy, fit and enjoying life to being in constant pain and in hospital is really hard. I work fulltime and have taken lots of time off work to look after him, take him to appointments and manage his medication. I spend a lot of time explaining to people who don’t understand IBD just how hard it is for Harrison to get out of bed. This is particularly hurtful when it comes from close family members who think he is just being lazy. That hurts me and I know it hurts Harrison a lot. Other people, though, who we don’t even see often, are just so kind and caring and check in on Harrison.

His dad has a job waiting for him whenever he feels he can get back into the workforce. For Harrison, to go back to fulltime work will be hard on both him and the employer as his unreliability due to the illness will be frustrating. His dad and I just want him to be happy and healthy like all of our kids, and we will do anything to help him get back on his feet.

What motivated you to start a Live Fearless Challenge (LFC) team? How has this team grown since starting in 2018?

In 2018 Harrison’s Crohn’s was still a fairly private battle, and we still thought he would get better eventually. As all of us were new to this world, his first gastroenterologist suggested we join Crohn’s & Colitis Australia (CCA) for advice and information. I saw the LFC and thought why not do this for Harrison? Initially it was to raise money for research and awareness of this disease. My daughter, sister and nephew were the only ones in the team and managed to raise $500. The following year we completed the challenge and raised $1,000. In the three years since we began, Haytch’s Modest Pelicans (as we’re called) has grown to 21 people and raised close to $10,000.
Our campaign was delayed this year due to the COVID-19 lockdown, but we were still amazed at the response. With support from friends and family, we brought the team number up. Harrison’s fiancé, Casey, owns a barbershop in Sunbury and many of her clients
donated too. We also had a raffle and some boys did dares to raise funds.

How has support from the LFC team affected Harrison?

Having 21 people walking 150km really boosted Harrison’s mental state. He felt like he had another 21 people on his side, especially during this year’s challenge, when he was particularly sick. Our campaign has seen everyone from students to people on JobSeeker and JobKeeper being involved in one way or another. Harrison is aware of this and is in awe of peoples’ generosity. Every day he got messages from people asking him how he was. And even the briefest message buoyed him when he was feeling low.

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 loved to play sport and catch up with friends. However, I do I feel that I missed out on some of the teenage and early20s experiences like my other friends. You know, the nights out dancing with the girls or gap year holidays. I was always in a state of where is the nearest toilet? and wondering when my next stomach pain would come.

I sometimes look back on my life and seriously can’t believe what I have been through. People often think IBD is just a disease where you go to the toilet more than 20 times per day and have to eat certain foods, but it is honestly so much more than that. From this disease I was diagnosed with pyoderma gangrenosum (on my ankle), where I spent four weeks in hospital and four months not being able to walk. I had multiple operations, a split skin graft and many hours of rehabilitation to get mobile and regain my strength. I was a graduate nurse during this illness period and it really gave me a different perspective on being a patient and a nurse. It was an invaluable lesson and as you can see, I always take a positive from a negative.

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. 

This year I participated in the Live Fearless Challenge with my younger sister Georgia. We are two of four girls in the Caruso clan and we are otherwise known as the bookends in our family. I am the eldest and she is the youngest. Our original team name was Caruso Crohnie’s, then my fellow ostomate and friend Justan Singh asked to join. We then became Caruso Crohnie’s and the Almighty Justan. Our team quickly grew to five members, with people joining from different states in Australia. The more the merrier we thought, and since we all had a common goal in raising awareness and fundraising, communication in our team was easy. We all have a great connection now and have built wonderful friendships from this challenge.

IBD has taught me to be grateful for every day. The advice I always offer to people newly diagnosed with IBD is to surround yourself with the right people, listen to your body, be kind to yourself, take one day at a time, have fun on the good days and rest on the down days! 

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.

Jason Brennan achieved outstanding success in this year’s Live Fearless Challenge. Here he shares a few tips on how he did it

The main reason why I decided to participate in the Live Fearless Challenge was to raise awareness about Crohn’s and colitis. My health issues have never been a secret, but as a typical bloke, sometimes these things can be difficult to talk about and don’t normally come up in general conversation.

The fundraising was a great way to get people talking and it was very surprising how many people had been or knew of someone affected by IBD. It was great to raise awareness and let people know that they are not alone and that there is always support available. I managed to run every day and clocked up 169km for the month of September. It was hard on the legs not having a rest day, but the hardest thing was fitting a 5km run into an already very busy work and life schedule. My wife and I had recently added a third child to the mix in July, so our lives were still adjusting to having the new baby in the house. I cannot thank my beautiful wife Linda and kids (Lily 12, Tate 9 and Mila 3 months) enough for their amazing support during this challenge!

My friends and family are absolute superstars, which made the fundraising so successful. I had a lot of support from my family, but the Kalgoorlie community is an amazing place that always supports a good cause. Whether it be through work networks or local sporting groups, the Goldfields is always digging deep to help.

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