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

He will need an endoscopy and colonoscopy to diagnose but sounds like it could well be crohns. My son just been diagnosed faecal calprotectin 1200 but apart from some blood in faeces generally very well. Hopefully you can get a diagnosis.

Thank you - what were your son's symptoms? Did he get tummy aches?

Tummy a little sore at times but not bad. Wouldn’t have thought anything was wrong with him until there was blood in his poo.

Exactly Same here Zebee

What has been saud going forward is he having to take medication?

I'm hoping that there will be no medication and just to monitor it and hope it doesn't get worse!

Course of steroids and then on azathiaprine long term. While he has few symptoms there was widespread problems in his colon. The aim is to have medication to keep in remission.

Thanks v much

Hi,

Sorry to hear your son is having problems. But even if it is IBD, the treatments are improving all the time. I am an old hand with ulcerative colitis, but I am doing better than ever on Entyvio infusions.

I don't know about Crohn's pain as I have UC. In the early stages my symptoms were mostly bleeding and diarrhea. Maybe some cramping but little pain.

You might find it helpful to do some reading, and this is a good place to start:

www.crohnsandcolitis.org.uk/about-crohns-and-colitis

@LoveFall thanks will take a look

He had the sme thing around 2 years ago but nothing was found so it was put down to a bug

I'm just so worried as he is so young

Hi we have been through this very recently and it is so worrying.

Just thought I would let you know what has happened with my DD in case it helps.

My 12 year old DD was diagnosed with ulcerative colitis after having uncontrollable bleeding, constant vomiting and severe pain for a couple of weeks. She got very very ill before we realised what was happening ( a trip to A&E diagnosed severe menstral bleeding and I was ignored when I expressed concern that it didn't seem like period bleeding )

When I realised a week after the trip to A&E that it was definitely rectal bleeding she was sent to hospital by our GP as an emergency and spent 5 days in hospital. This was at the end of Nov beginning of Dec.

Once she was stable and home she was transferred to the care of Great Ormand St .

She has had many different scans and tests and the diagnosis took a few weeks as they tried to work out if it was Crohns , meckel diverticulum or UC.

She had an endoscopy and colonoscopy at GOSH a week before Xmas which confirmed UC and she started on a cocktail of steroids and drugs on the 30th December. Because she was put on a high dose of steroids she had to shield for 8 weeks due to Covid risk.

She has a dedicated nurse at our local hospital who is checking her bloods regularly and we are having regular video conferences with the IBD team at GOSH.

She is having a bone density scan next week to make sure the drugs are not causing any problems.

She could not be better looked after and is now no longer vomiting or bleeding and now only gets a pain if she eats something that aggravates her tummy.

We are hopeful that once this flare up is completely under control and she is put on maintenance medication she will be able to manage the condition ok.

I really hope your DS gets the help he needs quickly.

@AngelsWithSilverWings thank you for your reply!! Sorry to hear what your DD has gone through but as you say, she is getting the right treatment! I wish you and her well.

The waiting is awful and the more I read he more I worry.

I'm thankful he isn't suffering (apart from multiple trips to the toilet) he is very well in himself!! Not one stomach ache .. hope thst continues!

Did they do any blood tests with the calprorectin, like a CRP or ESR, these are markers that help form a picture for IBD, colitis etc. It's at the colonoscopy/endoscopy that biopsies will be taken to get a definitive diagnosis.

Too much on-line reading can do more harm than good. Stick to the official sites, CICRA is another site for IBD in children. I hope things go well, and investigations are organised quickly as the waiting is the hardest part.

@Ohandanotherthing hi - I have the results and googled them 😬

CRP was normal range
ESR slightly above

I just cannot get my head around it being something serious wheh he hasn't had one stomach ache, fatigue etc

I've done too much reading about IBDs and it's made me panic so much and I know everyone is different!

.. and thank you - fortunately we are being seen v quickly and going to St Thomas's next week.

We were there 3 years ago but they didn't find anything (no cameras) and the problem went away until now!

Just as a bit of reassurance, Fecal Calprotectin is a very sensitive but not very specific test. In other words, it tells you there is a problem, but it doesn't follow that the higher the number the worse the condition is.

My FC was off the scale (>6000) and it turned out that I had fairly mild proctitis (irritation of the rectum). I have had a couple of big flares and now take mesalazine orally, but as my Consultant said, of all the IBDs, it's the most inconvenient but the 'best' to get.

Hopefully, it's something that follows the same pattern as before. It must be reassuring that those bloods are satisfactory. It's really good news that you are being seen so soon.

I wish you both the very best.

@Lougle that is reassuring - wow those levels are high!! I keep thinking if his are that high it must be bad!! Thanks again

@Ohandanotherthing thank you very much .. feel much calmer!

I had this (recently as an adult). Sample was 2000.
They did multiple stool samples, colonoscopy, blood tests etc. In the end, it was a spice in the cooking that would trigger me. Check his diet. Like really check it.

@justasmalltownmum thank you!

Again reassuring to know that a high FC doesn't always mean an IBD

He doesn't eat a very varied diet, it may be a coincidence but since switching him to white pasta and bread it's improving but again, may be a coincidence / wishful thinking

I'd love for him to have to avoid any cameras .. it's the drink before hand I just know he will not drink

The drink is grim, DS is only 8 and we had to force it into him which wasn’t nice. But good to get a quick answer as he can start treatment straightaway.

@Zebee I genuinely do not think he willl drink it - this is my major worry

Very very fussy 😬

Mix the bowel prep with a not purple squash and drink it through a straw. DS coped ok with that.

My DS has severe Crohns and only ever complained of pain when he had a bowel obstruction. But IBD is very treatable if that's what it is.

My DD (19) started intermittent bleeding last May, no real pain or other symptoms. After 5-6 weeks it increased and stool sample requested by GP showed nothing. Bleeding increase over 2 days so I called 111 and they said A&E within 30 mins. Admitted straight away on a Saturday night. Diagnosis of Ulcerative Colitis Monday when the docs had done all the tests. Her calprotectin was way over 2000. Hospital were amazing. She's doing well

Thanks @turkeyboots good tip about the drink!!! Thank you

@Secretsout that must have been very worrying - the blood is frightening to see, I'm wondering if that is what my son has.

I'm glad your DD is doing well

Only one poo today I think he is coming out if this 'flare up'

I'm literally the poo monitor - one good thing of lockdown I am able to monitor him and what he is eating, etc

Hi, mainly commenting to placemark, but I sincerely hope u get answers soon OP. My DD is currently going thru exactly this, and is also under GOSH, as a previous pp DC. Faecal calprotectin of over 3000 and back down to 400 literally a week later. Had the colonoscopy and endoscopy...waiting biopsy results now. However, Crohns has been ruled out as DD is very constipated. Horrible time of it, bless her

@Whywonttheyletmeusemyusername your poor DD!!! Sounds like you are very near to a diognosis now you have had the biopsies.

Keep us posted!!

I wish I wasn't sent the results of my son's tests without having spoken to the doctor as I have gone mad googling it all, of course I'm not trained so lots of research and panicking 😫