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

Hi yes she's been on the fizzy pop and is quite adventurous when ordering food! We have told her today that it's bland food and squash until we get home. GOSH have asked us to have blood tests and do another stool sample when she gets back. We get home on Friday.

@AngelsWithSilverWings that maybe explains things then .. a sudden change in diet obv not agreeing with her!! Keep note of all of the foods she has had to look back on and be able to see the triggers!

Hopefully lack of fizzy and bland foods will stop the flare from getting any worse and will hopefully improve .. not long until you see home!! Hope you all enjoy your holiday xxx

Home from holiday now and thank goodness the bleeding cleared up a day after we put her on a bland diet and cut out the fuzzy drinks. GOSH think it was just a tear due to her not taking her stool softener medication for a few weeks after she complained it made her feel sick. The blood was around her stools and not mixed in which is a good sign that it's not a flare up apparently. They were very reassuring so fingers crossed they are right.

@AngelsWithSilverWings I have been thinking of you!!

What a relief, I really hope you all managed to enjoy your holiday and your DD continues to be flare free for a long time!!

I'm due to do a stool test for my son as per his complaint of feeling dizzy but he isn't letting me (not telling me when he is having a poo 😬) - dizziness has stopped now and has stopped since school ended (think it was tiredness) but I still want them to check for any inflammation!

So it turns out she is having a flare up after all. Lots of blood loss over past few days so we are going to the local hospital for urgent tests at the paediatric assessment unit.

Awful timing as she has a meeting at a new school today as they've offered her a last minute place for y9. She's got to do a CAT test. Hospital have said to come straight after the test which is at 2pm.

Nightmare!

Oh god I'm so sorry to hear this .. please let's hope they can get a handle on it quickly and especially before she is back to school!!

Poor thing and poor you, it will be fine and thankfully she is being seen quickly.

Is she feeling ok in herself?

Keep us posted xxxx

We're at the hospital now waiting for blood results. She's eating and drinking fine but just feels washed out and tired and has tummy pain. The bleeding has been getting worse and worse all day.

She's in a bed on the children's assessment ward so she's comfortable.

We did the school meeting and thankfully they've decided to do the tests once they offered her a place instead. We came straight to the hospital from the meeting. Will find out tomorrow if they can give her the place.

So much going on!

Oh you poor thing what a day!!

At least you are in the right place now and they can get her stabilised and home soon!

Well done to you - it's so tough on us mums to watch our children suffer - thinking of you both!

Please update when you can x

We were at the hospital for 6 hours. They were happy that she was stable enough to come home but she couldn't provide a stool sample all day because only blood is coming out. Initial blood test results were ok but we are waiting on the rest.

Going to try again today to collect a sample as they want to rule out an infection before starting her on a new course of steroids. DD very upset at the thought of more steroids due to the weight gain they cause.

In the meantime they have doubled her daily dose of pentassa so I'm hoping that will help.

@AngelsWithSilverWings glad you are home and I'm glad the initial bloods look ok!

I hope she can avoid the steroids, bless her.

Fingers crossed you can get a stool sample today and sent off and the higher dose of Pentasa kicks in.

Also worth considering trying a probiotic as when I gave my DS these his symptoms cleared up before he even had his colonoscopy but it may have been a coincidence.

I'm always on edge waiting for another flare to happen it really is a journey.

I hope you are ok .. you must be shattered!

Thanks so much. Can you tell me more about the pro biotic? Is that an over the counter thing or something I should ask the doctor about?

We dropped the sample of this morning so we just need to wait now.

We just got the news that she has been accepted at the new school so that will give her a massive boost.

Fab news about the school!!!

The probiotics are Dr Formulated with vitamin D and C - if you google it it comes up from the Garden of Life website.

You have to order online and the dietician at the Evalina said fine for him to take - as mentioned it may well have been a coincidence but it's definitely worth a try! He is sick of taking them as they are chewy ones (not gummy but chalky) but I make him!

www.gardenoflife.co.uk/microbiome-kids-berry-cherry-30-chewables/12323338.html?affil=thggpsad&switchcurrency=GBP&shippingcountry=GB&gclid=EAIaIQobChMI_-ub09Hd8gIVg7TtCh1s6wGIEAQYCCABEgIKSvD_BwE&gclsrc=aw.ds

Thanks for the link. I will ask the IBD team if it's ok for her to try them.

We are booked In for an iron infusion on Monday and a decision will be made then about whether another course of steroids is needed. DD hoping it won't be!

@AngelsWithSilverWings I keep popping on here to see if any updates!

How was the stool test was it showing much inflammation?

Glad she has the infusion booked in and hope no steroids needed. Hopefully the higher dose of Pentasa will kick in!

My son is complaining of a bad stomach ache and of course I'm panicking now 😓😓

Hi the fecal cal protection test result isn't back yet - takes a week apparently. The other sample was tested for infection but is clear.

Oh dear - hope your DS is ok.

I'm convinced DD's flare has been triggered by her starting her periods.

She told me she had a tiny bit of blood with her stool while we were away camping in July and then a week later she had her first ever period so we just thought it was that. The big flare up started a week before her second period started and the flare got to its most severe the day her period came. I can't believe it's a coincidence.

@AngelsWithSilverWings yes you couid have a point!

My sister in law works in medicine and she said triggers can be food but can also be changes to body such as puberty / hormones etc

My son was at Thorpe park today and ate rubbish and was on stealth a few times so please god let the pain be from over indulgence, etc! Holiday and a few family parties he has had lots of fizzy drinks and basically rubbish 😭😭

Just a quick update. Had video meeting with GOSH and the consultant is going to prescribe some foam that should stop the flare up without the need for steroids. If no improvement in two weeks he may call her in for another camera investigation.

He said there is no harm in giving the pro biotics a go so I've just ordered them.

She had a good first day at school but she's come home shattered and in quite a bit of pain.

Hi @AngelsWithSilverWings

Really pleased they are trying other things before the need for steroids.. hopefully the foam does the trick, I have heard good things about it as a result of my manic googling of the condition. 😬😬

Just curious as to why they will do another camera - do you mean another colonoscopy?

Really pleased she had a good day at school.

Re the probiotics .. worth a shot and they will give her extra Vit C and D which can only help!

Thanks for update .. it's really helpful to me to know what to expect when another flare happens. X

I assume it's a colonoscopy but he just said camera investigations. I think it's just to see if the inflammation is in the same place as before. Apparently the position of the inflammation can dictate which method they use to clear it.

I'll let you know how the foam works out! Fingers crossed.

Fingers crossed!! Hope your daughter starts feeling better soon, she sounds like a trooper!!

So we've had an absolute humdinger here.

DD's blood results came back today and show that she has not been taking her azathioprine. Hospital phoned to tell me (on a Sunday so must be bad)

Sat DD down to talk and after telling us a pack of lies for half an hour finally confesses to the fact that she has been throwing the pills away since the start of the summer holidays.

I'm in bits. Can't even process all the emotions I'm dealing with right now. Guilt , anger , embarrassment and complete and utter disbelief at her stupidly.

Have messaged the hospital back to tell them what she has admitted to and will await their guidance.

We are two days in with the new foam medication but hospital are now worried that she can't be trusted to administer it herself.

What a mess.

I am so sorry to hear this, thank god the hospital noticed.

Dont feel guilty it really isn't you your fault, she is a teenager and teenagers do really stupid things even though they appear to be trustworthy!!!

She made a mistake and the key is she learns from this error.

Has she given any reason why she has been throwing them away?

Don't be so hard on yourself, it will sort itself out. See what the hospital say tomorrow x

She's not showing any remorse whatsoever so far. She said the pills made her feel dizzy and sick and she thought that as long as she kept taking the pentasa granuals all would be ok.

She has told barefaced lies to both the IBD nurse and the consultant when asked about taking her medication properly.

She is now saying she would rather deal with the blood than the effect of the pills.

I'm still very angry this morning.

I keep thinking of how much of our life we have put on hold while dealing with her issues over the last few weeks and it's making me even more angry.

It was our silver wedding anniversary and we cancelled our plans because we couldn't leave her with family while having a flare up.

I feel guilty about all of the care and attention she has needed from the hospital , the nurse and the consultant - taking up emergency appointments that could have been given to others. Guilty about the cost to the NHS of the drugs she has thrown in the bin. Guilty that she has carelessly disposed of drugs without any thought.

I'm sure I will calm down eventually but I can barely even look at her this morning .