Very high calprotectin in 13 year old daughter

[Casper438]

Any advice or thoughts would be very much appreciated. My daughter is 13 years old and for the past 6 months has been experiencing regular red fresh blood marbled through her poo and rosy blood on the toilet tissue when wiping. Since January she has had 2 bouts of severe mid abdominal pain, where she could not get off the sofa and missed 3 days of school. She has also been very lethargic. She had 2 lots of different blood tests all normal and two stool samples which did not show any infection. As the bleeding has continued and the GP cannot see anything visible at her bottom they did a calprotectin test. This came back at 1800+ as the labs couldnt test any higher. We have just had an endoscopy and colonoscopy yesterday which was very distressing for her. Endoscopy showed small ulcer in her oesophagus and nothing in her colon so they are fairly confident it is not an IBD. They have taken biopsies which we will get results of in 3 weeks and they are now booking her in for small bowel MRI as this middle section couldn’t be viewed with the scopes. We are so worried about her as her calprotectin was off the chart, she’s exhausted and has blood in her poo and on wiping every time. No weight loss, no haemorrhoids, no fissures, normal bloods. Just have no clue what is going on with her.

[SuzyQ67]

How distressing when it comes to our kids. I hope the MRI will show what is going on, blood in stool is not normal. I have crohns & belong to another IBD forum, the calprotectin numbers vary person to person. I see others with numbers higher than this & have zero symptoms & then some slightly elevated have symptoms. It's frustrating, keep pushing for answers, including getting a 2nd opinion if no answers are given after the MRI.

[Casper438 in reply to SuzyQ67]

Thank you for the reply, it’s awful when it’s your child, if I could switch with her I would in a heartbeat. The consultant has a plan C and if MRI doesn’t give us anymore information then it’s onto pill cam. IBD is horrid and I don’t think it’s completely off the table until the biopsies are back. Very frustrating when people call it IBS as it’s so not the same thing at all! Thank you, we will keep pushing until we have a resolution for her.

[Iamthemedicalmystery]

So worrying for you. I had exactly the same symptoms and calproctin was also 1800 and my fit test was 302. Endoscopy showed gastritis and colonoscopy found a 4.5cm polyp and lots of other smaller ones. The biggest one took nearly 4 weeks before I got the biopsy results. Unfortunately it showed high grade dysplasia and I'm currently awaiting a date to remove it . Normally they remove during colonoscopy however I wasn't told to stop my blood thinners so they could not proceed. I really hope they can help your daughter and that the mri points them in the right direction x

[Casper438 in reply to Iamthemedicalmystery]

Thank you, just need to keep pressing on until we know what’s wrong. You clearly are having a hard and distressing time too, hopefully after surgery you will be on the road to recovery and the medics will keep a closer eye on you moving forward to ensure you stay well. Take care