My Son started feeling unwell, weight loss, mouth ulcers- after a few visits to his GP investigations began. C was only 12 years old and your average young lad who loved football, gaming and time with friends and family.
Little did we know that his/our lives were about to change.
Blood results/stool sample came back showing signs of inflammation, and we were asked to go for an ultra sound scan- images came back showing C had Crohns disease. We were referred to QMC in Nottingham and plans were put in place for treatment. Initially Consultants advised that steroids would keep the disease at bay.
Following an MRI scan, results showing that this was a severe case of Crohns and affecting more than 30cm of his bowel- further plans were put in place.
All this time my son, feeling unwell, fatigued, facing pains he’s never experienced before- and asking… Why me?
C started on Biological Infusions. We would spend the day at the hospital every couple of weeks. These left C feeling “buzzing” his words. They restored his energy and he was feeling much better.
After around 4 months, C started to feel unwell again. After investigating it came apparent that his body had formed antibodies to reject the medicine.
What do we do now??
C has started on injections, along side a Immune Suppressive medication- we have everything crossed this treatment will work.
C has good days and bad days- he struggles with his fatigue, this has stopped him enjoying playing football, enjoying time with his friends and family. The impact this has had on his mental health, we have tears regularly as he tries to deal with living with this disability. He has to think about everything, is there a toilet? What if?
As a Mum, to see her baby boy face these struggles daily is heartbreaking, I try to stay strong for C, but this has been life changing.
We have learnt to make the most of the good days!!
