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

My DS has been through this. His only symptom was bleeding from the bum. No pain, diarrhoea or anything else. Diagnosed after colonoscopy and endoscopy as IBD (undetermined). A course of steroids brought the flare under control and he is on a maintenance medication now. No further flare or symptoms for 18 months now.

We've cycled through a few different diagnosis - Crohn's, UC and back to undetermined at the moment. Treatment hasn't changed though and as I said he is flare free so that doesn't seem to be an issue.

So definitely could be IBD with no other symptoms based on our experience but equally could be something else. Again my DS blood tests mentioned by PP were never outside the normal range.

Age 8 - 15 is the most common age to be diagnosed with IBD, my DS was 15.

Hope you have some answers soon OP.

@chuntersalot thank you - I am glad your son's is under control and there is no pain!

IBDs seem to vary so much from person to person

Thank u @Remmy123. It's all such a minefield, and one of those things that "never happens to me " type of scenario. I am also the poo monitor, much to DDs disgust. It is reassuring to know though, that the higher the FC result, doesn't mean the worst

Two episodes of diarrhoea last night (with some red blood)

This was after a couple of days of being ok and me feeling hopeful it was getting better 😢

It does seem to coincide with eating wholeneal pasta - apparently it makes it worse!!

Also all of our referrals have been marked urgent and that worries me

If IBD is expected then the referrals will be marked as urgent. NICE guidelines (for an adult) show that they should be seen by a specialist within 4 weeks.
DD1 was diagnosed with ulcerative colitis in July last year. Initially she didn’t have any pain or diarrhoea but that came as the flare got worse. Thankfully DD responded really well to treatment though she does seem to be flaring again.

@Cactusowl thank you!!

So much reassurance from you all.

I hope your daughter feels better soon - poor thing.

As far as food goes, when my ulcerative colitis is flared, I can't handle raw fruits (except bananas) and vegetables. I can't tolerate spinach, lettuce, or kale. They literally go right through me and cause cramping. I have to cook vegetables well.

Also high fat foods make me feel worse. I also stick to white bread etc.

People comment that maybe it's my unhealthy diet, which really annoys me.

I am in remission on Entyvio now, and I can eat everything, including the evil spinach and kale.

I don't think that foods trigger flare ups, just that during a flare my unhappy colon can't handle some things.

Until you know for sure, you might want to stick to a relatively bland but high protein diet. Chicken and eggs, plus yogurt/kefir are things I can tolerate well when sick (well, sort of well).

@LoveFall thanks - actually the foods you listed I have read seem to make people worse.

I've switched him to white bread and pasta rice etc ... only going to the loo once a day now if that.

No bleeding now

Only a few days until the hospital .. they obviously won't be able to tell me what it is but they may give me more of an idea - he wouid have had 5 stool samples and several blood tests at that point.

Back to school in two weeks so keen to expedite things.

Long-time UC sufferer here. When in a flare I have to eat a very low fibre diet or the diarrhoea is awful. I can not eat raw fruits or vegetables and even cooked ones can't be leafy and green I also have ot stick to white bread and pasta, nothing wholemeal and avoid dairy as milk also triggers more mucus etc for me. Its trial and error to find what works, but low fibre definitely helps me.

Thank you -

The most he was going to the loo was x3 a day it's never been that bad, hoping it's mild and stays that way!

How long does a flare last for?

He started this in December and seems to be coming out the other side now I think .. might be because of the low fibre diet.

The flare two years ago seemed to only last a couple of months too.

Glad to hear you have your appointments through now.

It's so hard not to worry and the bleeding is horrible to see.

The night my daughter was admitted to hospital she literally had blood pouring out of her and was vomiting constantly too. She was dangerously dehydrated , it took the doctors a few hours to get her stabilised and the bleeding continued for a few more weeks until the medication kicked in.

I'm telling you this because even though It was so traumatic ( I still have flash backs ) and I was constantly Googling and imagining all sorts of horrors she is completely fine now that she has almost finished her current treatment course.

It has been a long three months to get to this stage but she is fine and being brilliantly looked after by both GOSH and our local hospital.

We have no idea if UC will cause her problems for the whole of her life but now we know what it is it is manageable and we can control any future flare ups.

My son was diagnosed with crohns when he was 8 [ he is now 20 ]. We went through two years of hell with not being able to get a diagnosis, but finally saw a doctor who agreed to run tests and found he had crohns all through his digestive tract [ mouth through to anus] with multiple ulcers and inflammation. He was started on azathioprine, pentasa and steroids.

Bleeding never was, and still isn't symptom my son had. He had constant stomach pains, fatigue, foul breath. He was also getting lots of night terrors and sweats. So much so I was having to change his bedding at night.

Flare ups can run for a long time if not taking the right medication, and even sometimes then flare up can happen.

As someone said the drink for a colonoscopy is revolting! It was extremely hard getting my then 8yr old to drink it. Don't mix it with anything red. You can drink things like 7up or Sprite, but no coke.

Things will move very quickly once scopes are done if they find IBD. You will given results on the day. If they take biopsies these will take longer. The first step nowadays is often a liquid only diet for 6/8 weeks to get the flare up under control, something like modulen or fortisips, Boost. There are others now but I can't remember their names off hand. These work really well, but can be tough to do.
Keep up a low residue diet, anything white, bread, pasta, rice. Fibre can make flare up worse, so low fibre.

You will be sent to a paediatric gastroenterologist and get assigned an IBD nurse who will be your first port of call.

CICRA [ www.cicra.org/] are very good, crohns and colitis UK. Also check out uk parents of kids with IBD on facebook, they give excellent advice for parents.

PM me if you want to discuss more. I have been living this almost 12 years now, so seen most things regarding IBD. Good luck, it is very scary first going through this. Luckily there is lots of help out there. Twelve years ago when my son was diagnosed there was no social media help when a child had this, which made it very lonely dealing with it on my own.

@AngelsWithSilverWings sounds terrifying!! Thank god she is i now though! Xx

@Londonnight thank you for your help!! Sounds like you and your son have been through so much before getting a diagnosis! Hope he is doing ok now.

Thanks for your informative post.

The more I read his symptoms seem to link more with UC.

Feel very impatient .. just want to know!!

@LoveFall This is exactly what everyone has been saying about my DD....her diets bad. In actual fact, she eats the healthiest diet out of all 4 DC.

@Londonnight That's really useful info for me as well, thank u

I've just spoken to my Consultant and although biopsy results aren't back, they're talking about 2 options - either the Modulin for 6 weeks, or another patent capsule test, but as the last one didn't go to plan, they were going to place it where it needs to be, under a GA, and do another endoscopy and colonoscopy at the same time. Her last FC results have gone up to 4000 now. Is there anybody on here that can give me an idea of which way would be best to go? Has anybody done the Modulin for 6 weeks?

@Whywonttheyletmeusemyusername did they not say what is best rather than a choice?

@Londonnight can you help?

@Whywonttheyletmeusemyusername
My son has done the modulen diet about 3 times for 6 weeks. He actually one time did it over Christmas and his birthday [ early January ] First time he did it was when he was 9. We went on holiday to Majorca along with 12 cans of Modulen. That was fun!
It can be tough to do. The diet itself contains all calories and nutrients needs daily. No other food allowed. Some allow clear mints or jelly, and clear fluid like 7up, but other dieticians don't allow anything at all apart from Modulen
It is a large volume to drink each day and the first week especially can be really difficult. Some can't cope with this amount and end up having the feed through an NG tube. BUT, it does help. It gives the bowel a rest and often within days people on it feel so much better.
Make it up in advance and keep in the fridge as it is better cold. You can add flavourings like nesquick or crusha syrup to flavour it.

It is hard for them being around food. The first time my son did it I did a Slim Fast diet alongside him. I used to eat my main meal when he was at school then have Slim Fast in the evening with him. I also bribed him to drink it with promises of something when he completed it. In his case I put some money aside each day and presented it to him at the end of 6 weeks. I think he got around £300 :)
He used to take his beakers of drink to school each day and managed really well. I was extremely proud of how he coped with it all, I am not sure I could do the same.

Was the capsule test the pill cam test? My son had his done under GA when he was 14, which showed he now had crohns in his small bowel as well as his large bowel. Normal scopes can't reach the small bowel which is why the pill cam is needed

Ds had the liquid diet for 6 weeks. Thankfully it was over the first lockdown so had no school issues. It was good in that he gained weight, and he had Pediasure which he didn't mind. But didn't resolve much in his case.
You really need a look at the small bowel. DSs MRI was cancelled initially with Covid and if he'd had it, he could have had planned bowel surgery rather than the emergency it ended up being.

Londonnight your son's story mirrors my own. My son had/has very advanced disease. diagnosed at 15 but started at least at 13 I knew there was something wrong but the vagueness of symptoms didn't alert anyone until his weight fell off all the centiles and he couldn't get up the stairs without a rest so I took him to A&E rather than GP again. Finally diagnosed with hugely elevated bloods then confirmed with calprorectin, colonoscopy, endoscopy and MRI.

He did 6 weeks of liquid only, School was hard with friends ordering pizza etc. He was amazing with compliance. So proud of him. It was very effective in giving bowel a rest and him getting appetite back and pain reduced.

turkeyboots lockdown would have been a perfect time for him to do the liquid-only diet and just be at home concentrating on getting better, having a familiar bathroom nice and close and everybody else being off school too.

After steroids, immunosuppressants and immnunotherapy everything within normal limits now.

Early days are hell but life is much better now.

Thanks for ur replies, that's incredibly helpful @Londonnight. Her poor bowel / intestines etc definitely need a rest from all this. If you don't mind, I'm going to screenshot your reply. Yes @Remmy123, they indicated that after I'd given them my opinion !! They'd already decided on another endoscopy and colonoscopy, but wanted to hear what me and DD thought. I'm veering towards that as well, but have to let them know about the Modulin by email tomorrow. Yes @Londonnight, that test....the pill cam ! It didn't go where it was supposed to during the "dummy run", so they aborted the actual test. They're going to place it now, under GA. Your poor son....he sounds a real trooper going through all that. Thanks @turkeyboots for ur reply also...my DD had an MRI recently, which showed up some "abnormalities "

@Whywonttheyletmeusemyusername What did you decide in the end?

I've been desperate for schools to go back but now I'd rather he was home!!

We are down to one bowel movement a day now and better consistency 😂

Hi @Remmy123, I've gone for a repeat of the endoscopy/ colonoscopy that shes already had, but this time they'll place the pill cam in, bypassing the stomach. I'm still not sure I've made the right decision, but I think although she will be able to deal with the Modulin, she won't be able to for the full 6weeks iyswim. Oh that's good news for your DS...and a slight weight lifted for you. Everything crossed 🤞 for both of you

I think I wouid have made the same decision!! 6 weeks liquid diet sounds hard esp when it may not be essential just yet.

Hope you get an appointment soon! X

Thank you @Remmy123.....please keep us updated with your DS....this thread is incredibly helpful

Yes I certainly will - agreed it's v helpful

Our appointment is Friday late afternoon