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Personal Story

A Mother’s Story


Ali McCallum writes about coping with her young son’s Crohn’s disease

For a long time, my 9-year old son, Ned, was a very active, happy, healthy ball of energy. Then, in July 2011, he was diagnosed with autoimmune hepatitis (AIH), primary sclerosing cholangitis (PSC), and Crohn’s disease.  

Something’s Changed  

A year before the diagnosis, I started noticing that Ned didn’t have as much energy as he used to. Instead of climbing trees, riding his bike, playing soccer, and chasing his brother, he spent weekends building Lego spaceships and watching movies. But I brushed it off as Ned growing older and changing interests. Nearly a year later, Ned told me he had blood in his poo. When we spoke to a GP, I also mentioned two things that had been at the back of my mind.  

Firstly, Ned is particularly small for his age. He was (and still is) about 30 cm shorter than his classmates. It turned out that Ned is below the first percentile for height. The second issue was that Ned had infrequent episodes of vomiting, for no apparent reason. It wasn’t usually associated with a fever, it didn’t seem linked to any food, and it wasn’t accompanied by tummy pain. We just thought he was a ‘vomity’ kid.  

Diagnoses  

The GP ordered blood tests. From there, it all unfolded quickly. The results were followed with referrals to a paediatrician. When we couldn’t get an appointment with the paediatrician for three weeks, the GP called the paediatrician and we had an appointment the next day. That was a scary moment for me. The GP was obviously worried.  

The paediatrician referred Ned to a paediatric gastroenterologist in Sydney. A couple of days later, Ned underwent a myriad of tests in hospital. The results showed he had deranged liver function and anaemia.  

Eventually, Ned was diagnosed with Crohn’s disease, AIH, and PSC. He has some cirrhosis and extensive fibrosis of the liver. And although his Crohn’s appeared to be mild, the coverage was extensive.  

Grief and Gratitude  

Despite all this, Ned hasn’t missed too much school, and hasn’t seemed that unwell. I wonder though if feeling slightly unwell has become the new ‘normal’ for him. I am grieving. I cry frequently: for the disabilities that this diagnosis may force on Ned in the future; for the pain it may cause him; for the inconvenience to him and all of us; for the loss of my healthy, happy bundle of energy.  

But it has also been a violent exposé of all we have to be grateful for.  

Our family has provided incredible emotional and physical support.  

Friends too have offered their support and help in many different ways. Ned’s school, his teacher Margie, and his classmates, have been fantastic. My employer has been extremely accommodating, flexible and understanding, despite me edging ever further into arrears for personal and annual leave. How very lucky we are to have such a great ‘village,’ a community of friends and family around us. And how incredibly fortunate we are to live in Australia, with amazing health care professionals and facilities, and a health care system that has given Ned the care he needs.  

I hope that one day I will get past the grief, and have gratitude fill its place. I hope one day Ned can experience perfect health again. I hope one day I will cry tears of joy at the news of a cure for IBD.

Posted on: February 23 2018

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Good article. I certainly appreciate this site. Continue the good work!

I was very interested in the article "Good Vs bad bacteria - the bugs responsible for Crohn's disease". I was diagnosed with IBD 6 months ago and after a very bad reaction to Pentasa (but unproven) I was told to wait and try again when the symptoms peaked again. However, I started taking Probiotics each day and (touch wood) I have been in remission for 5 months, with high hopes. I am very interested in the research in this field.

My 16 year old daughter was diagnosed with UC in July 2016 and after 4 flare ups within 12 months and trying different medications, she was prescribed infliximab. This has been the miracle medication for her and am so thankful that she has been able to return to a "relatively normal life", enjoying school and her passion for sports again (bar 8 weekly visits to PMH for inflixmab infusions, routine colonoscopies and mezzaline daily). I had very little knowledge of UC and autoimmunie disease for that matter; and was shellshocked at how debilitating it can be. We are so grateful to have a wonderful gastro and medical team supporting my daughter and of course the impact that inflixmab has had; however know it is still early days and don't want to take anything for granted.


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