12 year old extremely fecal calprotectin IBD

[Remmy123]

My son has had constant diorreah since Xmas with fresh blood. We are waiting for an appointment to the gastro ward but I saw his results and his fecal calprotectin was sky high (2,000) the week before it was 550.

He does not suffer, he has no stomach aches , eats normally and has energy, looks well, etc

The doctor was amazed with such a high reading he is not in pain.

He tested negative for celiac so they think it's IBD.

I'm thinking Chrones but the more I read doesn't that come with stomach pain and feeling unwell?

Anyone have any thoughts?

Thank you

@Fullywhelmed thank you I'm pleased you appreciate my relief!

Fingers crossed for you too xxx

Hi all

Hope everyone is doing well!

I just wondered how often your child gets a check up - our hospital hasn't seen my son since diognosis a year ago just a call every few months. He has had one stool test in that time and one blood test.

I left a message for the nurse over a week ago asking when next check up is and no reply. This is the number I am to call for any issues so it worries the silence worries me.

He is under the care of St Thomas's in london

Thanks!

Thanks for this thread.

My dd8 has been almost diagnosed with IBD. Calprotectin was 1710. She's been suffering for months with abdo pain & diarrhoea & worse lately. Waiting for date to do scopes & take biopsy from consultant appointment on Friday past.

While it feels sad & overwhelming, she's stabilised a bit in the last couple of weeks as we've gone smaller low fibre meals & gluten & lactose free. Worried about what's going to happen but glad to know what the problem is. She's so young I be dealing with this, but it helps to read all these posts of people managing.

Sorry I don't know how often checkups are. The consultant we saw on Friday said that we'd be up there quite regularly, but didn't say how frequently.

Hi @buckeejit

I am sorry to hear about your daughter but sounds like you are very close to a diognosis now, we had scopes 3 weeks from the consultant appointment so I hope the same for you.

My son actually went into remission before his scopes and has been fine since then, no further issues on his medication and it's been a year since diognosis! I've finally backed off asking about his bowel habits as he promised he will bet me know!

This part is the worse as you are just in limbo but things will settle soon.

Keep us posted and let me know if you need any advice as I really found the internet overwhelming wheh it came to IBD research!

X

Hi all
My dd is in symptomatic remission but her calprotectin still indicated inflammation last time it was checked (Dec). She is having quarterly blood tests for azathioprine monitoring at the hospital. We are there next week actually. They are going to do another calprotectin too. Her Crohn's was quite extensive - stomach right through to rectum. She has only seen the consultant once since her last discharge from hospital, at a checkup in December. However the IBD nurses have always got back to me within 24 hours when I have had to ring them. They are super helpful. I wouldn't be happy not to get a callback @Remmy123

My dd has put on 2 stone and grown 6 cm since diagnosis! Still not overweight either

Hi all,

Buckeejit sorry you find yourself in this situation with your little one. Although you don't want a diagnosis of IBD for your child if it does turn out to be that then it will be a great start for your daughter to recieve the treatment she needs to get her life back.

Remmy my daughter has a review every 3 to 4months. At that appointment we have to take along a stool sample and she has her bloods done. This way her consultant can keep a track on anything that is going on. She has a scopes s every 2 years for the consultant to check if anything is going on in the gut. When things are good it is so good to see the pics and compare them with the pics on diagnosis and see how lovely and healthy her gut looks.

I would get in touch with the IBD nurse again, sometimes you just have to keep pestering. You are entitled to do so for the benefit of your child.

Hope you can get an answer soon.

@Fullywhelmed so pleased to hear your DD is growing that is incredible! Hope they can reduce the inflammation further! X

@SunniG. He now has a face to face May but since diognosis (so one year) only one blood test and one stool test this whole time.

He is at the Evalina, St Thomas's London

I think because he is just on Pentasa maybe that is why no regular bloods it's quite a mild drug, from what I have read because no one has told me much 😬

I also didn't realise scopes every two years he will be absolutely gutted by this as he found the whole thing very traumatic (threw the liquid up) refused to then drink it - was a total nightmare.

Also I never saw the pics of the first lot of scopes!!!

Hi Remmy,

I'm unsure what the liquid prep is for scopes my daughter has never had to have any liquid prep beforehand. She has had to do a two day liquid diet but she doesn't mind that because she can have 7up,chocolate milkshakes and jelly. She has has that awful large liquid drink before having a MRI but she just takes a straw with her and takes sips over an hour.

I wouldn't worry too much about the scopes as every consultant works differently, our consultant is just very thorough. I know of quite a few children who have only had the scopes on diagnosis and then then gone 3 or 4 years before having scopes again.

Sorry I should add that my daughter has not had a liquid drink prep before scopes but she has had to take senoket and another medicine to give her bowels a good clear out.