children with crohns

[bowbie1]

Hi so my 6yr old has been having tummy problems for a while now, showing classic signs of crohns and a fistula, but has had many tests including MRI and colonoscopy and no sign can be found, has anyone else experianced this please, im going insane as to what the cause can be, even the doctors are baffled at the lack of findings with all the symptoms, this is my first time on here so hope this is ok xxx

Hi
My first time too! My dc had lots of symptoms, was only taken seriously when calprotectin levels came back over 1800!
What was your child’s calprotectin level? Usually a reliable indicator between IBD and IBS x

Hello, I don’t even know I just know they said they were normal but that was back in October & things have gotten worse since then x

Hi my DD was diagnosed with crohn's when she was 4, She also had a rectovaginal fistula. She now has a colostomy and has gammaglobulin infusions as her immunity is very poor. Her Calprotectin level was just over 2000. Hope you sort things out soon.

Hi, I would push for a calprotectin test again. As it’s only a stool sample, the results come back quite quickly and will show signs of inflammation (possibly not if dc is not in the middle of a flare up though) xx

My son had a complex fistula at 6 and was investigated for crohns - they didn’t find anything. He’s 10 now - gets tummy aches. I just hope there’s never a fistula again. He had 2 surgeries - including one open surgery. Just awful.

Have they treated the fistula with your child? It’s a dilemma for the doctors as i understand it as to whether to operate or not depending on whether it is crohns. My heart goes out to you.

have you had scopes and biopsies to rule out eosinophilic GI disease. similar symptoms

Ok !!! So now they are saying that she has an impacted bowel that has sagged down and stretched & admitted that was missed on colonoscopy, so I’m thinking could that be hiding other things like a fistula as that’s what her symptoms are mainly pointing to xxx