“Ahlia and I are a team. We have an incredibly close and loving relationship which I believe has been made even stronger by this journey with IBD. We have had some really, really dark days but on either side of that darkness there is joy, laughter and so much light!! IBD will never ever take that away.”
Ahlia was diagnosed with ulcerative colitis in 2014 when she was 13 years old. Although this is about Ahlia this is not her story as that’s hers to tell. This is Jan’s story as a mum sitting on the sidelines of inflammatory bowel disease (IBD).
Ahlia’s IBD crept up slowly. She had been bleeding from her bowel on and off for a few weeks before she told me. I acted immediately and by the time we had made our way through GP and specialist referral processes she was severely unwell. At this point, IBD had not been mentioned and I ignorantly thought (hoped) that with a bit of time whatever this horrible thing was would just go away. I couldn’t have been more wrong.
We were sitting in the recovery ward of Royal Children’s Hospital, Brisbane when Ahlia received her diagnosis. The doctor came and told us she had pan-ulcerative colitis, an incurable disease but manageable with the right medications. My heart sank and my stomach knotted as fear took over. This was not the news I wanted or had imagined hearing.
Parents such as myself are increasingly being faced with the reality of having a child with IBD. Childhood diagnoses are becoming more common with approximately 10 -20% of cases appearing in children and young people. What is worse is that the disease is usually more aggressive and complex, significantly impacting a child’s development at such a vulnerable period of their lives.1
I know the doctor spoke some more but I was still stuck processing the words incurable and disease. It appeared Ahlia’s body had been taken over by something I had never heard of. I started researching IBD and reading everything I could get my hands on. I prayed and made silent trade-offs with the gods. I’d lay awake at night hoping that she would sleep the night through without needing to go to the bathroom. My pleas were not answered and she was getting worse.
Watching her endure such excruciating pain, surgical procedures, intensive medication therapy, needle after needle was the most painful thing I have ever experienced. Sitting with her as she tried to process what was happening to her was utterly heartbreaking. We cried together but I mostly cried alone for her and the unfairness of it all. I had to be brave for Ahlia, to let her know it’d all be ok, but most of the time I felt she was braver than me.
Everyone has different ways of coping but it is always good to know that Crohn’s & Colitis Australia (CCA) provide more than just educational resources. The support groups they run and helplines, IBD Helpline and NurseLine, mean that there is always another shoulder you can rely on if it all becomes too much.
It was after a second major IBD event that I realised to move forward I had to make some sort of peace with this unwelcome beast and understand that it would revisit. As a mum, accepting that your child has a chronic incurable illness is a hard task. That’s why I put on my sneakers to achieve 150kms during CCA’s Live Fearless Challenge 2020; to raise awareness and much needed funds for people living in Australia with IBD. I would be really grateful if you could also join me in supporting the IBD community by donating to CCA.
“I believe the transition should not be just the ‘transfer’ of a patient but instead a well-planned process. We need to make sure the young person understands their disease and the medications they are on and when to take their medications.”
Nurse Practitioner Claire Reilly, paediatric IBD nurse, Inside Insight, Edition 2, 2020
CCA are strong advocates for more IBD nurses who can provide much needed help for both the patient and their family. Transitioning from paediatric care to adult care can be a stressful experience and having someone there to answer all your questions can really be a lifeline.
When she entered the adult health arena my role shifted. Her IBD team no longer addressed me they now only addressed Ahlia. She had to take on responsibility for the management of her health care and that proved hard for both of us. I had to do a lot of letting go and she had to really step up. The adult system was not quite as easy to navigate, so it was new territory on all levels. We realised it was going to take some adjustments and slowly, but surely, we got there.
“The best part of YEP! was hearing that I am not alone, talking about experiences with others, finding out ways to manage IBD through life”
YEP! Attendee, Annual Review, 2019
Please consider a donation to CCA of any size because their research, support and advocacy programs depend on your help and generosity. Past donations have given confidence to children with IBD by funding youth events like YEP! that provide young people with an opportunity to connect with others. I am speaking and acting now because emotionally and physically I have the energy to give. I am desperate for a cause and cure to be found for IBD.
Thank you for reading my story and I hope that you and your loved ones stay happy and healthy during the holiday season.
Should you experience any payment processing issues, please call Crohn’s & Colitis Australia on 1800 138 029 or email [email protected].