11 year old with IBS/IBD or something else.. he’s miserable 😞

[Bubbean]

Hello, looking for others experiences ..
My 11 year old has had up and down tummy issues for the last 10 months. Before Christmas he had unexplained tummy pain and missed 3 weeks of school. Was given omaprazole and it resolved but it did seem to ease over Christmas holidays. He has been up and down since January with blood in stool (they think a fissure) constipation then diarrhoea, nausea, heartburn, feeling full, urge to poo as soon as he eats. This does come and go in its intensity but this last week has been particularly bad. We are under the paediatric consultant at the local hospital and we have been referred on to the closest children’s hospital. Negative for coeliac on 3 lots of blood tests. All other blood tests great but fecal protectin had been 1180 then came down to 400/500 for the last 3 tests.
I’ve taken out gluten this week as he seems to be worse the evening after pasta or pizza …
Hes’s miserable, missing all the good stuff in his last term of primary school. I just want to sob for him. He’s had a lot of anxiety the last year too, we thought that was the cause but now I just don’t know. Just a vent really! But thoughts welcome 🙏🏻

It does sound like IBD and I am very suprised they have gone down the ultrasound route before a colonoscopy and endoscopy it is usually the other way round with the ultrasound being used for the areas that the colonoscopy and endoscopy can’t reach. The usual process is stool and blood tests and then the colonoscopy and endoscopy with biopsies.

In my daughter's case, she had the ultrasound first because it was during an unplanned hospital admission, and they could fit it in and get a preliminary idea whereas we were waiting for a slot for the colonoscopy.

I think the usual process works if you have a doctor working on some relevant differential diagnoses! In her case, the GP had no fucking idea what was going on and was no help.

Yes I hear this story an awful lot and it frustrates me like mad. So many Gp’s have very little knowledge of IBD and very often dismiss any symptoms a child maybe having after the child has had several visits to them. By the time some children finally get a diagnosis they already have a lot of damage to the gut which was my daughters case but thankfully treatment healed it well.
Our consultant told us there are so many children walking around with a diagnosis of IBS given to them by their GP, when a lot of the time it actually turns out to be IBD and they have been missing out on having the correct treatment.

A family members child was diagnosed with celiac disease at 8. He had suffered with tummy troubles for years. After having a gluten free diet he is much better.

Thank you for all these messages, it’s so helpful. Just an update.
We saw the paediatric gastro this week and he has booked my DS in for an endoscopy in about 3 weeks.
when my DS was unwell a few weeks ago we noticed he was worse after gluten so we cut it out and we saw a massive improvement. I checked with our paediatrician before doing this.
Now we have to put him back on the gluten in time for the endoscopy. 🤦‍♀️ I know we have to do it but he has actually been mostly himself for the last two weeks which has been wonderful.
Hoping the symptoms aren’t too intense as he has the last 2 weeks of year 6 with a show, a trip and a party! I don’t want him to miss anything. Equally we want answers/treatment before starting year 7 in September.

still not sure whether it’s pointing to Chrons/uc/coeliac. We have coeliac in family but my husband aunt ,,.

Could you move the endoscopy back a week or two so that you don't have to ramp up the gluten as much before the end of term?

I think it's really important to ensure the endoscopy is as valid as possible which means really investing in ensuring sufficient gluten consumed every day which you might struggle to do if you feel as though it will mean DS can't enjoy y6 leavers events.

In the long-term you really do not want to be cutting out gluten unless absolutely necessary. The vast majority of gluten free bread is produced using gums as thickeners. Gums are the one food that has been shown in studies to significantly negatively affect the gut and are implicated in IBD. Of course if your DS turns out to be coeliac then gums in GF bread will be the lesser of two evils (though I would still steer diet away from including a lot of it).

Aside from all that just here in solidarity. I have IBD and I am also a parent to a DC who hasn't been well for months (not IBD) so I can sympathise with some of what's going on for you here.

Thank you for your message! I have been horrified reading the ingredients on the gluten free bread!

I had a call today seeing if he could go for endoscopy in 2 weeks and I said no as it wouldn’t be long enough to get the gluten in. (even though they know he’s been off gluten and we need to reintroduce it)
now saying end of July so that would be 4 weeks of gluten potentially….

He’s 3 days into having gluten again and ok so far …but early days so far. He is very wary of gluten now so trying to not make a big deal of him eating it again.

Im sorry to hear you have an unwell child. It really is heartbreaking.
He missed his last Christmas church service with school where all the year 6 get to have special part. I had to go along anyway as my younger daughter was in it but knowing he was at home unwell and not participating was so sad …really praying he can get through all these ‘lasts’ for the summer!

Dh has IBS and it took a while to identify artificial sweetners as major trigger, then also gluten.

How have your tests gone? Have you had any results for your DS?

Hi Yes consultant said about 2 hours after his endoscopy and colonoscopy its crohns. She showed us all the ulcers they had found inside him. He’s going to be getting the injection treatment, just waiting for them to sort that out

I hope they find the right treatment for him quickly and you are ok too.

@Bubbeani hope your ds is helped soon too

Just spotted this thread and wanted to show some solidarity. My youngest son was diagnosed with Crohn’s Disease when he was 10. By the time he got his diagnosis (not for want of trying) he was pitifully thin and tired all the time, with big dark rings round his eyes. His fecal calprotectin started at around 250 for the first test and shot up to 1500. It was such a scary time for us. He is on fortnightly biologic injections and hasn’t had a flare up in two years.

I hope all goes well for your son and that you get a definitive answer

My DD also has Crohn's. She had a dreadful year 6 and was diagnosed on colonoscopy in October of year 7.

The gastro consultants can tell from the blood tests if it's coeliac or IBD. I was hoping for coeliac despite negative blood tests - having read on here that some people can be coeliac despite negative testing - but the gastro consult said that is extremely rare and presents differently in the bloods. He more or less told me it was IBD; we were just confirming on colonoscopy.

Be warned, if they find active IBD at the colonoscopy they may keep him in for refeed and liquid diet. We were in for a week, and 8 weeks liquid diet. I wasn't expecting this and we had nothing ready. So pop a travel bag in the car in case x

Thank you! I’m so hoping it’s coeliac but I need to be prepared that it’s an IBD. He’s so well at the moment. The best he’s been in many months.
how is your DD now since diagnosis and treatment?. I’m finding it the of idea of an IBD very scary but I’m trying to learn as much as possible about IBD incase that’s the news we get.

It's almost 4 years since she was diagnosed. I would say during that period she has had 3.5 years in good health -2 good years, then a flare up for 6 months, then new meds for the past year. She is on a biologic medication now and doing really, really well right now.

I also have ulcerative colitis and similar symptoms to the OPs son and your DD. I was already on a biologic for rheumatoid arthritis (which is wonderful and I still am on) so I also take a medicine called mezavant.

OP, I am in Spain where the public health system is for want of a nicer way of putting it better than the NHS. When I presented at my GP with those symptoms I was given a colonoscopy and blood tests within a couple of weeks which made the UC diagnosis very straightforward and fast. I encourage you to push for this for your son or possibly get a private one if that is an option and insist that they look at the images instead of prolonging it and messing about with guesswork. If it is the case that the colonoscopy comes back clear then ok, but if it doesn't then my experience has been that my symptoms were gone within a couple of weeks of being on the proper treatment and touch wood I have never had any flare up since and it has been 4 years since it all started for me.

UC is unpleasant but manageable with proper treatment. Enduring it untreated is hell. Perhaps it isn't this and of course it would be better if it wasn't, but they can actually find out very easily and should be being more proactive.

I wish you and your child all the best.

Thank you so much for your message! It’s so good to hear you have been well the last 4 years. We are waiting to hear the date of the endoscopy any day now, I’ve been told end of July. He is currently really well and the best he’s been in months , Can stress cause flare ups as he was so stressed over school …
school is more relaxed and it seems that his symptoms have massively faded apart from the blood in the poo which is consistent.

i think they thought he had a fissure for a while which was causing blood. It was the high calprotectin that’s brought about the referral to paediatric gastroenterologist.

I really hope it’s not Chrons or uc but so reassuring the treatments are effective. X

Yes stress can flare ups for some people!

Hi just to update! We have the endoscopy and colonoscopy of Friday under GA.
He’s been really well the last few weeks. Managed to do all his Year 6 leavers stuff. Has been back on gluten for 4 weeks with no adverse affects. Still had blood in poo and is underweight but no other symptoms.
Dreading giving him the picolax and the tablets he has to have. Poor lad 🤦‍♀️
At least we should have some answers soon.

Argh!!! Cancelled because of a strike!! 🫣😢🤦‍♀️ Got to wait until end of August now x

Oh no! That's so frustrating OP!

That's so annoying just as you were so close to answers!

Hi everyone! We have our colonoscopy tomorrow… my DS has taken his senakot tablets … that took half an hour… it’s taken another hour for him to drink the picolax… he’s with my husband while I put my daughter to bed and i can hear him wailing 😭.
He was being so good having a sense of humour about the whole thing and now it’s all for a bit real. We’ve not even had any poo yet… could be a long night! Somehow we’ve got to persuade him to take it all again in the morning! At least we might get some answers finally tomorrow!
i think a lot of you were told straight after the colonoscopy I’m guessing?
he’s been so well all summer - eating normally but with occasional soft poo… but always a little blood in stool. We will soon know at least … Just an offload before I go and support him! Brave mummy face on!

Good luck for him for tomorrow - I'm assuming he'll have a GA? My dd thought that was quite fun really and has no memory of the actual scope.

Depending on who does it and your appointment set up, you might not get any details until a follow up appt? Not sure though, just guessing. My dd had her first colonoscopy as an inpatient, so we already knew from the ultrasound that there was a lot of inflammation and she almost certainly had an IBD, and I think the consultant came to see us afterwards and said she thought it was UC (she already thought that was more likely than Crohn's). But you need the biopsy for a definitive diagnosis, unless things have progressed, so they need time to review those.

Good luck for tomorrow!

We were told the same day there was active IBD, probably Crohn's, and that she would be staying in to do the liquid diet - but if DS is not too poorly at the moment he might not have to stay in. If their weight is very low they have to monitor their bloods during refeeding. That's what happened to us.

The actual final diagnosis takes a few weeks from the biopsies they take. Our confirmed Crohn's, obviously.

If he gets a tentative diagnosis do come and join the FB page for UK parents of children with IBD. I learned an awful lot from them!