Wed 08, Mar 2023 , Bridge Magazine
Although Rhiannon’s journey with Crohn’s disease began relatively recently, the striking thing about her is her determination to put the things she loves foremost in her life. Rhiannon went from being very fit and active to developing a condition which she says has completely changed her life. However, she is determined to get on and do the things she enjoys, like travelling and socialising with friends.
“I suddenly had to think about things I’d never thought about before and I realised how much I appreciate the good things I still have in my life,” she says. “I’m just not the same health wise, but I’m hoping once my health is under better control that things will be amazing again! I’ve had a lot to process and deal with and I’m just giving myself the time I need to get on top of this.”
In 2021, Rhiannon was diagnosed firstly with polycystic ovarian syndrome (PCOS) and then later that year with Crohn’s disease. After a year of unexplained symptoms and repeatedly being told there was nothing wrong with her, Rhiannon was not prepared to sit and suffer in silence. She was adamant there was something wrong, despite being told there wasn’t, and persisted on her quest to get some answers. “Basically, everything I ate was just going straight through me and I was bloated and tired and feeling miserable all the time,” she says.
Initial investigative tests did not reveal any results, but Rhiannon insisted that what she was experiencing wasn’t normal for her and asked to be referred to a gastroenterologist. After a colonoscopy and endoscopy the diagnosis of Crohn’s disease was finally confirmed. She was then prescribed anti-inflammatory medication, however after a year without significant improvement sought a second opinion and was prescribed a different medicine which has had more of a substantial effect. Her condition is being regularly assessed and monitored. “I have the occasional bad days along the way, but that is part of the journey now,” she says.
Unfortunately, Rhiannon experienced judgement and discrimination because she doesn’t look unwell and the PCOS has caused her to gain weight. “It was almost like some people couldn’t believe I was sick because of my appearance,” she says. Unkindly, she was told she didn’t look like she was sick, but actually looked like she was eating too much. “Little did they know everything I was eating was literally going straight through me,” she says.
Rhiannon is frank about her current state of health and will clearly tell people if she is unwell. Not surprisingly, fatigue is a dominant symptom of Crohn’s disease and there are some days she is unable to participate in much. She says the support and understanding from family, her partner and close friends has been essential. “I can always admit when I’m struggling, so if a friend wants to catch up and I’m not feeling up to it, I will say so and that is fine,” she says. “I used to worry about letting people down but now I don’t and I know sometimes the best course of action for me is to just rest and people will understand.”
She also refuses to act as if she is fine when she is not. “It's alright to tell someone you are not okay. If people can understand what you are going through, then they can offer you support but if they have no idea you’re even suffering they can’t do anything. It’s okay to be vulnerable and talk about your feelings,” she says.
Stress is a major trigger of the flare ups Rhiannon experiences and she is mindful of this. “I can’t let myself get too stressed. I need to stay calm and I try to process my stress with deep breathing,” she says. Fortunately, her flare ups mostly tend to occur at home, so she hasn’t been caught out or had an accident, however always carries a change of underwear and wipes with her just in case. “I don’t go anywhere without knowing where the toilets are, which is something I never had to think about before,” she says. “The National Public Toilet Map App is something I rely on. We recently drove from Adelaide to Melbourne and I was worried about needing to go to the toilet and being in the middle of nowhere, so I found it very useful to help plan the journey,” she reflects. Rhiannon notes she also relies on the app when getting around her home city of Adelaide, as it helps her to feel confident knowing where the nearest toilets are.
Rhiannon has also been able to travel overseas with careful planning, research and preparation. “One thing that I have always loved and dreamed of being able to do more of is travelling. I had six weeks off university for the semester break in June and July, so my partner and I decided to make the most of that by traveling to Europe and the UK.” Although she is an experienced traveller, this time Rhiannon knew it would be different, and would require more thorough preparation and planning.
“I did a lot of research on the places we were going, tried to learn a few sentences like "where is the nearest toilet?” in different languages, and looked at each country’s laws regarding medication, or if you needed to pay to use their toilets in certain places,” says Rhiannon. She also made sure she always had some local currency with her, enough supply of her prescribed medication and added travel insurance just in case.
All of Rhiannon’s careful planning was more than worthwhile. Whilst she did experience a flare up of her condition before leaving Australia and had one difficult day during her travels, she managed to have a great trip and came back keen to plan the next one. “I’ve always loved travelling and I don’t want this illness to stop me,” she says.
When her Crohn’s illness was at its worst, Rhiannon experienced bowel urgency multiple times a day and couldn’t venture far from a toilet. She is also very open with the people she works with and has found that to be a supportive environment as well, particularly if she is having a flare up or difficult day. They also sponsored her fundraising for the Crohn’s and Colitis Association for whom she managed to raise more than $3,000 as part of their annual Live Fearless Challenge to raise awareness for people living with Crohn’s disease and ulcerative colitis. This was also when she penned her lived experience story which is featured on their website.
Rhiannon observes that initially she felt shame about her illness and tended to hide away from people but then realised that mostly everyone is dealing with some challenge in life and this didn’t make her unique. She decided to speak up about what she was going through and was pleasantly surprised to receive a lot of empathy and support. She initially started a private Instagram page for herself and her partner to keep her accountable and document her progress. However, after opening up to others she wanted to encourage people going through similar experiences to reach out and ask for support as well, so she made her Instagram account public - @rhishealthjourney.
“I wanted to make sure that no one going through the same or similar experiences to me, ever felt as ashamed or as alone as I did,” she says. “These things can happen to anyone, at any point in their lives. I never thought it would happen to me, but maybe I can be the one who can help other people to feel better. I’ve had a lot of messages telling me how much my posts have helped others and that means a lot.”
Rhiannon is very realistic and well informed about her condition and future prospects. “People ask me what I will do if I need to have a stoma* and my answer is if it has to be done then it has to be done. If that is going to improve my quality of life, then I’m all for it,” she says. “I’d rather that than be in pain and feeling miserable and not being able to do anything.”
When Rhiannon was first diagnosed with Crohn’s disease, she joined Facebook support sites and found many answers, information and help from members and their posts. She also says the visibility of social media ‘influencers’ who have stomas and are very open about sharing their experiences, is helping people to talk more about these topics and reduces the stigma.
Rhiannon’s advice to others going through a similar experience to her own is “don’t be afraid to reach out and ask for support and understanding. Having a good support network is so important and can make such a big difference to your quality of life,” she says.
What is a stoma?
A stoma is a small surgical opening made on the abdomen to allow waste (urine or faeces) to be diverted out of the body. It is covered with a collection bag or pouch which needs to be emptied regularly. A stoma may be permanent or temporary, depending on the cause. The most common reasons for needing a stoma include bowel or bladder cancer, inflammatory bowel disease, diverticulitis or an obstruction to the bowel or bladder.