Growing up I was a healthy and happy kid, but that all quickly changed as I entered my teen years – the years where chronic diarrhea was embarrassing and not something you wanted to talk about, so I didn’t.
My mum bought me lactose free milk and gluten free bread, thinking these dietary swaps would put an end to my trips to the bathroom but they didn’t, and they became increasingly frequent as the months went on. It wasn’t until after a trip to the emergency department with crippling abdominal pain on my right side (which should have been the first IBD red flag), that we realised something wasn’t right, and that was when the long diagnosis process began.
I started my final year of high school at a new school in 2012. I was shy and with my embarrassing bowel issues, I really struggled. I missed a lot of days for appointments and scans, or simply because I was too sick and couldn’t be too far from a toilet because at this point, I was needing to go at least 20 times a day. My symptoms were far beyond any sort of intolerance and we needed to dig deeper, so I was finally booked in to have my first of many colonoscopies, not knowing what the end result would be.
Receiving the Crohn’s disease diagnosis
After waking up in recovery after my endoscopy and colonoscopy in November 2012, the gastroenterologist pulled my mum and I into a little room where we received my diagnosis – Crohn’s disease, a type of inflammatory bowel disease (IBD). Finally, a name for why I was so sick. This was such a relief because having a diagnosis meant we could treat my symptoms, but it also left a lot of questions about a disease we knew nothing about, because before that day, I had never even heard of Crohn’s disease.
I honestly didn’t know just how cruel Crohn’s disease could be until I had my large bowel removed, because for the past decade, having diarrhea and a sore stomach had just become my normal. And I was always aware of ‘colostomy bags’ (this is what I called them, not knowing the difference between a colostomy and an ileostomy until I was in hospital about to have my very own ileostomy), but it was just something I associated with old people – not someone in their twenties.
So, when I was getting wheeled off to theatre in April 2022, about to lose an organ that spans one and a half metres, that’s when it really hit me. Crohn’s disease is really serious and it is life changing.
Living with Crohn’s disease
Life changing is exactly how the last few years have been. Being a wife and a mum to two young children with a chronic illness and a few major surgeries under her belt has been a lot, both physically and mentally.
Physically, the recovery for a colectomy (removal of large bowel) and proctectomy (removal of rectal stump and rectum) is really tough. Post op you can’t drive and you can’t lift and this is something that I still need to be mindful of (which is hard when you’re a mum of young kids). You have to adjust and learn a whole new way of life – how to care for your stoma, how to change your bag, what foods to avoid, the list goes on.
Even at 13 months post-op, my ‘barbie butt’ still isn’t fully healed which has been a pain. However, the mental recovery is what I have found the most painful of all. I suffered with medical trauma and I became extremely burnt out from living in fight and flight mode for so long. I was running on autopilot, just trying my best to get through the days, whilst fighting a silent battle internally. However, after just over a year post proctectomy, I feel like I’ve finally come out the other side.
I am often reminded that I still have Crohn’s disease (especially on days like today when I am due to do my subcutaneous treatment, Stelara, which keeps this incurable entire-digestive system-affecting disease at bay), but it doesn’t take away from the gratitude that I have for my stoma.
It’s been a wild ride to get here and while there are some challenges that come with living with a stoma, we really are the best of friends. Thanks to my stoma (I know a lot of people name theirs but mine is still nameless), I can finally leave the house without worrying if I’m going to poo myself, I can enjoy (most) meals again, and I finally have the energy to be the mum that my kids deserve. If it wasn’t for my stoma, Crohn’s disease would have continued to take their mum further and further away from them. Finally, my husband is also getting his wife back. Well, he didn’t know me before Crohn’s disease, so I hope he gets a version of me that is a lot more of ‘in health’ and a lot less of ‘in sickness’, which I have a really good feeling he will.
The importance of raising awareness of Crohn’s disease
I turn thirty in October and this next decade is reserved for happiness. One thing that makes me happy is opening up about my journey with IBD and my permanent ileostomy, because I think advocacy and awareness is just so important.
We are so lucky to be surrounded by so much of it now through the power of social media and I hope I can help empower more people to seek help and not be embarrassed to talk about poo! It is so important that we see more awareness about invisible illnesses like Crohn’s disease and ulcerative colitis – and just how life changing IBD can be for people of all ages. This would have helped the 18 year old me.
What is Crohn’s disease?
Crohn’s disease is a chronic inflammatory bowel disease (IBD) that primarily affects the gastrointestinal tract, causing inflammation that can lead to a range of symptoms. Common symptoms of Crohn’s disease include persistent diarrhea, abdominal pain, fatigue, and weight loss. Unlike some other inflammatory conditions, Crohn’s disease is characterised by periods of flare-ups and remission, making it a lifelong condition that requires ongoing management.
What causes Crohn’s disease?
The exact cause of Crohn’s disease is unknown, but it is believed to involve a combination of genetic predisposition, immune system dysfunction and environmental factors.
Can Crohn’s disease be treated or cured?
Currently, there is no cure for Crohn’s disease, but it can be effectively managed with a variety of treatments aimed at reducing inflammation, relieving symptoms and preventing complications. For those with severe cases or complications, surgery may be necessary to remove damaged portions of the intestine or to treat issues like fistulas and strictures. While treatment can significantly improve quality of life and induce long-term remission, ongoing medical care is essential, as the disease can recur or progress over time.
What is the life expectancy of someone with Crohn’s disease?
People with Crohn’s disease generally have a life expectancy comparable to that of the general population, thanks to advances in medical treatment and management. Medications, lifestyle adjustments, and in some cases, surgery, allow many people with Crohn’s to lead full lives.
Rhiannon Jones will be participating in the Live Fearless Challenge next month. The challenge was created in 2017 to encourage people living with IBD to set healthy routines for their mental and physical wellbeing. This year’s month-long challenge provides an opportunity to enhance health and wellbeing, raise awareness, and support those affected by IBD. As Crohn’s and Colitis Australia’s primary fundraising event, the aim is to engage over 600 participants and raise in excess of $300,000 to support essential services and initiatives for the nearly 100,000 Australians living with IBD.
Register as an individual or team at www.livefearlesschallenge.com.au.
