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We hope you enjoy reading Bianca’s story. If you would like to share your story with us, please post on our page or send us an e-mail: email@example.com
“As for most of the families I have met since Leonardo, who is now 20, was diagnosed in December 2010, our family was not aware of the existence of Crohn’s disease before that moment. Like in so many other cases, Leo had been unwell for months before, with regular stomach pains mainly, and the repeated visits to the GP didn’t provide us with an answer, a part from the, again common, misdiagnosis of Irritable Bowel Syndrome.
Events developed rapidly from diagnosis and the beginning of regular trips to Alder Hey Hospital, where we finally felt we were going somewhere and could begin to deal with such big revelation in our son’s life. 8 weeks of Modulen, bravely drunk with a straw gave results and Leo was pain free. Unfortunately things turned dramatically with the reintroduction of food, and within a couple of weeks Leo had to undergo major surgery.
It was during the time spent in hospital that I came across both NACC and CICRA and it was a bit of a lifeline, providing me with information and the chance of talking to others.
I also felt, later on, that being able to talk to other young people would have been extremely important to Leo, as since the surgery and all the readjustment he had to go through, he was withdrawn and quite low.
It took a little while for Leo to accept the idea, but since our first attendance to one of the Family days organised by CICRA we never looked back. The experience of listening to other children/young people talking about themselves and listening to doctors and experts relating facts and knowledge, sharing their own experience is invaluable, and in my view it has given Leo some tools to help him deal with Crohn’s, now and in the future. He has made good friends too, and was able to ask questions that perhaps in a normal medical environment he wouldn’t have been able to.
The family days have been extremely useful to me as well, for providing the chance of asking the medical team those questions that never get asked, for lack of time or confidence, and making it easier to provide advice and support to Leo. “
Thank you Bianca for sharing your story.