AN Irish woman has spoken about how doctors thought she had a basketball injury, was being bullied, or suffered from an eating disorder before finally discovering she had Crohn’s disease. When she was younger, Victoria Spillane couldn’t understand what was wrong with her as she started getting pains in her left knee and lower back. Medics initially thought it was from playing basketball regularly.
She told us: “Back in those days, it was the late 90s, inflammatory bowel disease wasn’t very prevalent in society, so I think with a lot of GPs, it wasn’t very well known to them to even spot the signs. “So it started with things [like] ‘Oh, it could be a basketball injury that was causing the pains and aches that I had’.” But doctors started to think something else was going on with her.
She continued: “When the other symptoms started to come on, it was a case of, ‘Was I being bullied in school for me to be stressed’. Then when I was losing so much weight because I just couldn’t eat, the GP would ask my parents in front of me, ‘Would she have an eating disorder?’ “I remember sitting down at 13 saying, ‘No I don’t have any of these things, I don’t know what's wrong with me’.” Her whole body was starting to be affected, as she recalled: “My parents were bringing me to the GP because the pain just wouldn't go away.
"Then a few months after those pains started everything else started to come on, I would have diarrhoea up to 20 times a day, severe chronic abdominal pain. Inflammation in my eye, joint pain, and chronic fatigue. I lost my appetite, so I lost a lot of weight and then anaemia kicked in - my whole system was shutting down.
” Victoria was just 13 when she was diagnosed with Crohn’s disease , thanks to her own research with her parents. She explained: “[My mum] said enough was enough and brought me to Cork University Hospital . I was admitted straight away into the paediatric ward.
I’ll always remember [the doctor] coming in and saying, ‘Who let this girl get so sick?’” After tests, he saw that Crohns had made her entire large intestine severely inflamed and fully ulcerated. She spent years on steroids and other medications, but nothing seemed to work. Doctors told her that her intestine at the time looked like one belonging to someone in their 80s.
Now 39, Victoria works in APC Microbiome Ireland in University College Cork , and with Crohn’s and Colitis Ireland. Growing up, she had wanted to be a doctor but her condition put an end to it. She revealed: “After being diagnosed with Crohn’s, I had to rethink what I wanted to do career wise.
If I was to become a doctor [or nurse] and work in the hospital, I would be basically living in the hospital because of working there and then being admitted when I was ill.” She now works helping others who are diagnosed. She added: “I just had to rethink my future taking into account my illness .
My parents always said to me, ‘You will have to fight harder than others to have a normal life,’ - which I did. I'm a very competitive person and I think I competed with myself to not let Crohn’s take over, which is easier said than done because you have days where you can't get out of bed, you can't lift your head up off the pillow you're so tired, you're so ill you can't eat. “I was hospitalised a lot during my teens, it was hard - when you're on steroids and your appearance is constantly changing.
Mental health wasn't really spoken about back then, I just had a very strong support network around me.” Her life started to change for the better when she was 24 and she had surgery to get an ileostomy bag fitted. She told: “I just said the time has come, the doctors agreed, and I think that they were kind of happy that I had come to that realisation myself.
On January 21, 2011, I got my life back. “It was the best thing I've ever gotten done and I've been in remission with Crohn’s since, I haven't been on medication.” Victoria explained that Crohn’s is a lifelong illness, and at some point, she will require more surgery.
Despite this, she keeps an optimistic outlook on life, explaining: “You just have to wake up every morning with a bit of hope that you'll have a good day and if it's a bad day, so be it - you work through it as best you can and just hope for the next day. If you have another bad day that's fine. There’s light at the end of the tunnel and even if I go through a bad period it's a case of ‘OK what can I do to look forward to the future?’ There’s always something there to look forward to”.
The illness has impacted her life in many ways, with Victoria explaining that she suffered four miscarriages and came to the decision with her partner to not have kids. The number of people diagnosed with irritable bowel syndrome is around 40,000 in Ireland - but it's likely higher than reported due to people’s embarrassment talking about the symptoms. You can listen to Victoria speak about her illness and hear her advice to others on the new episode of the Gutcast podcast .
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