Charlotte

Charlotte was diagnosed with severe ulcerative colitis 20 months after first having symptoms. Her mum tells their story...

It all started in November 2016. Charlotte was visiting the toilet more often and suffering with chronic tummy pains. I put this down to periods - Charlotte was 12 years old at the time. But I knew it wasn’t right for her to be going to the toilet that number of times.

Charlotte then approached me and told me that there had been blood when she went to the toilet for the past couple of months. I made an appointment with our GP who referred her to our local hospital. The first appointment came through for February 2017. We were told by the paediatrician that he thought she was suffering from constipation and he prescribed Movicol. One day, after an appointment, Charlotte fell to her knees in floods of tears, looked up at me and said “Mum, what is he doing to me? Do I have something wrong with me?”

This got me really thinking, enough is enough.

She was suffering with tummy pains on a daily basis, looking lethargic, tired and she just had no energy. BUT he was a well-known doctor, who was “apparently” fantastic, so I had believed him.

I went to a new GP and explained what had been going on. By this time it was May 2018. He was astonished that the paediatrician had not done any further testing - considering our family history. In one year of being under this consultant he’d taken just one blood sample. My GP was disgusted – here was a child who’d been bleeding for so long, in pain for so long…

Charlotte was referred to another doctor who was over an hour’s drive away. I wasn’t bothered by this as long as my daughter got the care and diagnosis we needed.

We had an appointment on 22 June 2018. I was very nervous as we walked in, not knowing what to expect – would he fob us off? I had little faith in doctors by this time.

We went home and by the afternoon we’d had a call to say the doctor wanted to see her in hospital on 22 July for a colonoscopy and endoscopy. Preps meds taken over the three days before the appointment, off we travelled to the hospital. The staff at the hospital were absolutely fantastic with Charlotte. The doctor came to discuss what he’d found just after her procedure. Her colon was swollen and covered completely in ulcers. It was severe ulcerative colitis. It had taken this doctor four weeks exactly to diagnose her!

Charlotte was given a high dose of steroids and other meds, which she was absolutely fantastic at taking. It didn’t faze her one bit. But as the months have gone by, as she’s growing and becoming a young lady, hitting that time in school, she has become more and more unwell. She relapsed in December 2018 and hasn’t been well since then. She was admitted to hospital last week and given a three-day IV steroid - fingers crossed she will be feeling a little better very soon.

I just don’t have Charlotte to care for, but also five other daughters, a job, a home and my own health to take care of. But as a family we have stuck together, we have been there for each other and we have cried and laughed over all this.

My husband has been my rock as well as close family and friends. I really don’t know what I’d do without them all being there to support me and listen to me rant!

I really wish I could take this away from Charlotte. It sucks sometimes.