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Autoimmune disease

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Suspected ibd in 5 year old

6 replies

Enterprisemummy · 04/01/2026 19:17

Hi everyone, looking for any advice or reassurance really,
Im a single mum to a 5 year old girl who is generally happy and healthy. Over the past 2 years her stool has been soft on and off and frankly quite weird looking, floating pieces etc.
Fast forward to start of December she had approximately 5 days waking up early with pain needing a poo, some of those days she went twice or 3 times and then was fine for the test of the day
On day 5 i brought her to doctor, was not worried at all, just thought maybe a weird tummy bug..since then her fecal calprotectin has come back at 900, repeat in 2 weeks and blood tests. No blood or any other symptoms. Bacterial infection has veen ruled out . Stools went back to normal 2 days after doctors but have started to get mushy again this week, but with no pain and just once a day.
I am so so worried, i have myself tied in knots panicking and living in a constant state of anxiety over this.
Guess im looking to hear other people's experiences with kids that have ibd, what the symptoms were, would the symptoms just come and go?

OP posts:
Enterprisemummy · 05/01/2026 19:20

Anyone?

OP posts:
ThereIsAlwaysWine · 05/01/2026 19:29

Hi x is her FCP still 900? Have they planned to do a colonoscopy at all?

ThereIsAlwaysWine · 05/01/2026 19:32

UK Parents of Kids with IBD (Ulcerative Colitis and Crohns) group on Facebook is fantastic also x

ThereIsAlwaysWine · 05/01/2026 19:33

My son was diagnosed with Crohn's aged 7, he’s 16 now

Enterprisemummy · 06/01/2026 09:32

Thank you for your replies, the calprotectin levels are being repeated in 2 weeks so finding the waiting really really hard, she is completely well, which i am obviously very grateful for but everything i have read says that levels that high are highly indicitive of ibd so i guess I'm just looking for positive stories and some advice.x
Thereisalwayswine, how is your son now and how was the journey to get you here?

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