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

Yes; one of the first hints that DD was losing weight was the retreat of her breastbuds which are smaller now than a year ago. She hasn't grown heightwise for a year and puberty seems to have arrested. I asked the consultant and he said when she is getting enough nutrition she will catch up, and she is young enough to do so without any long term impact on her height etc.

@Remmy123 my DD has always been tiny anyway The steroid treatment must have helped as her breast development has continued. No period this month though but that could be normal as it would only have been her third one anyway or it could be to do with the messing around with the drugs and the new medication. Who knows 🤷‍♀️

Thanks ladies!!

He put weight on during his flare up which is unusual as supposed to lose weight so maybe that's why they are not concerned but I am. I just want to make sure.

He got measured at the hospital in February and I compared it to latest height by the doctor last week and he has only grown 2-3cm. No sign of puberty either.

He is patiently waiting for something to happen!!

Woohoo! Just weighed DD and she has put on 1.3kg this week :)
Those shakes are liquid gold.

Wow amazing news!! So pleased for you and well done to your DD!!

@Fullywhelmed how is it all going? X

DD is doing well. Put on 4kg and much more energy. Got a bit of her old sparkle back.

How about your boy?

Great news!! Glad she is coping on her shakes has it been hard for her or does it make her feel full?

My son is doing good, no issues as yet - finger crossed 🤞

I think how much better she feels is quite a motivator tbh. So she's coping fine. Luckily she likes all the flavours of the prescribed shakes.

...and a setback. Now on day 9 of no poop. Poor girl is completely bunged up. Taking movicol but so far it's made no difference.

Day 9! Poor thing ... have you spoken with her IBD nurse?

Yes, been on movicol for days. Now sitting at the hospital, the ward said to bring her over. Hoping to get some relief in the next few hours fingers crossed

Oh bless her ... she must feel so uncomfortable!! Poor thing.

Hope there is movement soon.

Thinking of you x

Day 11 and FINALLY she has passed a lump of poo! Howled the house down, poor thing.

Ouch!!!!! Poor thing - hope she is feeling better!

So we are back in hospital for a couple of days, dd had an NG tube now and is having her movicol and about half her feeds down it. I have learned to manage it and we should get home tomorrow. Dd was very against it but actually I think she's coming round as she doesn't have to drink the movicol which she hated so much.

How are your kids doing Remmy And Angels?

Oh goodness sorry to hear she is back in the hospital!!

Movicol can take time to kick in.

And how are you?

All ok here, DS did a stool test which came back very low so we have gone from 2000 in February down to 26 so the tablets are working!!

My two eldest children have IBD/IBS

They suffer with constipation, regular bouts of stomach aches and long time on the toilet. They also get a tummy ache before and after going to the loo. Also nervousness sets it off too if for example my daughter hasn't been for days she gets more nervous about having to go as she fears its too big and painful to push out.

I hate them having it as I suffered with it too a lot when I was younger.

@MakeMineAdoubleChocolate oh bless it's awful!! IBD is either rushing to the loo or the opposite!!!

It is difficult. I hope it gets easier for your boy. All my love and best wishes to you and your family

How are we all? I hope your children are doing well and excited for Christmas and eating lots of yummy food without issues 🙏

I missed this @Remmy123
Happy Christmas! Mine is eating quite well, and on 2 shakes a day. Lost a little weight since she started eating but doctor doesn't seem worried. She put on 8 kg in all in 8 weeks on the shakes. Recently had bloods and calprotectin done so hoping that the numbers are good.

How about you guys?

@Fullywhelmed sounds all positive - pleases all is good and she is gaining weight!

My son's recent calprotectin was 26 so was v happy ... no one else really shared my excitement but this time last year it was around 2,000 😭

Merry Christmas!! X

Oh gosh Remy, that's a brilliant number. Celebration indeed!
Fingers crossed for similar numbers here