My son 13: My 13 year old son has had a... - Crohn's and Colit...

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My son 13

Emma1453
Emma1453

My 13 year old son has had a calprotectin level of 3500 and as u can imagine I’m freaking out!!

Iv read people’s levels but not seen anything as high as this.

He has been bleeding for the past 2 years unbeknown too me as he didn’t tell me it was only with some pushy talk that he finally told me as I kept seeing blood in the toilet.. he was super embarrassed about talking about it..

He has the runs everyday and also passes hard stools but has blood in it each time he goes.

He is also anaemic and started iron tablets today.

Can anyone shed some light on what might be happening as I’m climbing the walls with worry

Thanks

15 Replies
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I assume he has been referred to a gastroenterologist or gastrointestinal consultant. I feel as though I am reliving my past as I read this, except I was 11. The high Calprotectin level would indicate he has an inflammatory bowel disease (IBD). Pending further investigation, he may be better off removing fizzy drinks from his diet, along with peanuts, sweetcorn,Brussel sprouts and baked beans. He should also keep a diary (what he eats/drinks, when/how much and what exercise he does, and also when, how bad and how lo y the pain lasts) as this can save time and also be useful when he sees his gastro consultant. Good luck, and come back if you have any more questions or queries. BTW I am now a 63 year old grandfather.

Emma1453
Emma1453
in reply to FRreedman

Thank you for getting back too me!

I will start a food diary, he doesn’t have any pain what so ever, just the bleed every time he uses the toilet. There’s no pain. Do u no if the higher the stool sample levels are is that indicating that there maybe a substantial amount of damage done and may result in operating or am I looking too deep into things??

Really sorry to hear to son is suffering.

If you can afford to I would recommend initially going through the private system - I’m assuming you are in the UK.

Don’t get me wrong the NHS Clinics are magnificent, just the waits can often lead to more stress especially at the diagnosis stage. If he does have anything like IBD this is lifetime care which the NHS does well to manage.

Hello, Don't go overboard with worry! I've had a calprotectin result of over 4,000 and several in the 1,000+ range. It's much lower now and it does vary from one test to the next. A food diary is a good idea, and a low fibre diet might help for now until he has had a colonoscopy to see what's going on. I hope you have had a referral to Gastro for him, though the usual system may be disrupted by Coronavirus, unfortunately.

Emma1453
Emma1453
in reply to Valbaty54

Yes June he has an appointment. Do u know when ur levels have been at its highest what’s caused that? I’m just trying to understand all this as obv it all new too me x

Valbaty54
Valbaty54
in reply to Emma1453

It's just the level of active inflammation at that particular time. I don't really feel much difference as the test scores go up and down. Do read useful info on Crohns and Colitis UK website, and tell your son not to use ibuprofen painkillers which can make things worse - just paracetamol. There can be other signs of inflammation like sore eyes and painful joints.

Need an urgent appointment with gastroenterologist...

Emma1453
Emma1453
in reply to Shree6

He has one but not till June 😩

Hi

If your son has been seeing blood for the past two years and has a calpro test which shows inflammation and he is anemic it is definitely time to be investigated for a diagnosis of IBD or other. I’m sorry you both have to go through this now. I have a 15 year old son newly diagnosed with UC.

If your son is going more than 10 -15 times a day and already being anemic, and if it accelerates at any point, do not hesitate to go to the A&E.

How often does he go in a given day?

Hi Emma, sorry to hear about the problems that your son is having but try not to worry too much about his calprotectin levels, it does however sound like he has some form of IBD. I agree with Valbaty54, if your son ever has any type of pain, never give him Ibuprofen as this can exacerbate symptoms and make him much worse. Also be aware that ordinary iron tablets can irritate the stomach and cause diarrhoea, I'm not sure which type of iron he has been given but if he seems to be getting worse, maybe look into getting him liquid iron as it's much gentler.

As your appointment isn't until June, I think it would be a great time to try and change his diet to see if this helps him before the hospital puts him on any strong medication. Unfortunately there is so much information out there, it's hard to know where to start. As others have said, a low residual diet may help. There is also the SCD (specific carbohydrate Diet) this is a very restrictive diet but I believe has helped a lot of people (unfortunately it didn't help my son !)

Good luck and try not to let your son know how much you are worrying as I have found stress to be one of the worst factors for my son.

My own son had a story very close to this. His urgent appointment was 11onths away ! The day that letter arrived I called the Consultants secretary and asked when he could be seen privately. He had an appointment that afternoon at 4.45mm.Next day he had a Colonoscopy privately. By lunchtime he has. begun Steroid treatment and the Consultant put him on his NHS list because we couldn't afford follow up privately without remortgage.

It was worth every penny for that early appointment and diagnosis of Crohns.

20 years on he has had fairly long periods of remission and no surgery. He went to Uni and has led a normal life albeit on immuno suppressant medication.

In his case whenever he has a flare we use a restricted diet of mash potato and beef either grilled steak or roast. Bland but it works.

We kept a food diary and did an exclusion diet in the early days, we found dairy and wheat to be triggers but everyone is different. You need a food diary and record symptoms so you can find triggers.

I know how difficult it is to talk to young males, but you must bite the bullet. Crohns and Co'itis UK will help you with leaflets and information for your son and you to read. Best wishes

Ellj

Poppi2015
Poppi2015
in reply to ellj

I thought of going private for my daughter as she is suffering really bad at the minute.

ellj
ellj
in reply to Poppi2015

If you have a private hospital anywhere nearby it is worth asking about a consultant and getting a quote.

Best wishes

Ellie

Emma1453
Emma1453
in reply to ellj

I find it really too find out what triggers it as he is like this all the time bleeding and the runs it doesn’t stop and start. Was this Similar to you son?

Hi Emma. How is it going with your son? My 15 year old daughter has just had a cal-pro test at 2700, such a shock and has started iron infusions for anaemia. Her story sounds similar to your son’s. We had a Crohn’s diagnosis following an endoscopy and have been on a liquid diet Modulen IBD for the last few weeks. I hope things have improved for you. I’m having problems getting my head around it all.

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