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 🙏🏻

With faecal calprotectin like that, I'd guess an IBD. Took about 9 months to get my dd's diagnosis but that was after I'd ended up taking her to A&E.

Has he had an ultrasound (they can see inflammation) or a colonoscopy (this will be needed to take a biopsy to differentiate between Crohn's and UC) yet?

Good luck, it's horrible, but well researched and lots of available medications. My dd responded very well to biologic treatment and is doing ok, nearly 8 years later.

Hi @Bubbean - your poor poor boy - what a horrid experience for him and for you.
im not medical - so will leave more experienced people to advise in that area.
Two thoughts I do have and my DD did this. Has he had proper allergy test at the hospital?
my DD had one at hospital when she was 8. pin pricks up her arm and given micro doses to see where there was a reaction. She had one mild reaction but there were some young children in the waiting room with egg like swellings up their arm. She had micro doses of pollens, dust mites etc as she was getting repeated colds and coughs. But they were testing food stuffs as well on other children. He may be specifically allergic to something?

second thought is have you researched the microbiome and looked to try and improve his? He may agree to eat healthier and try following if he thinks it will make him better - you could also look at specific probiotics. I’m a big believer that a healthy gut helps the mind and it’s all linked. You may not believe that which is fair enough! Is he able to still exercise/ fresh air and try and get some kind of dried fruit down him/ up his liquid intake (weak squash if he won’t drink water) - to try and improve his constipation? that can be a huge cause of distress and cause fissures/ bloating and pain.
I hope he improves soon x

Thank you for your reply! It sounds like you have really been through it with your daughter. 😥 It really is so stressful waiting for answers and seeing them suffer. He’s had an ultrasound and xray. No inflammation picked up and the ultrasound was very thorough. Just saw a little bit of constipation but nothing significant. I’m wondering if the colonoscopy could be next… I’m dreading it but it will hopefully give us some answers. Was your daughter diagnosed with and IBD then? I’m so pleased to hear she is doing well now 😊

The calprotectin score suggests potential IBD needs to be explored further. I have Crohns. I'd ask that it's a gastroenterologist that he's referred to at the children's hospital who will be best placed to help. I'm assuming that's who they've probably referred to anyway. The Crohns and Colitis UK charity website is a great place for resources and advice if you need it. Good luck.

Thank you for your message, I really appreciate it. No no allergy tests yet though I did ask… will ask again!
Hes currently very tired and weak and not up to much exercise. He is also hypermobile so tires easily. I am trying to get him in the garden for fresh air.
im with you on the micro biome! He is an incredibly fussy eater and getting a balanced diet into him is a battle but we avoid UPFs as much as possible though I know we could do so much better. He’s become quite skinny so I think sometimes I just want him to get the calories. We’ve used probiotics before but not for a while so think it’s time to try again.
Id try anything right now 😆🤦‍♀️😅
Thank you so much for your kind reply x

Yes, she was diagnosed with UC when she was 14. It was a slow deterioration for months, with bloods showing nothing, and a lot of "is it anxiety?"/"there are lots of reasons for teenage girls to be not eating", and then a very rapid further deterioration over a couple of weeks. Even in A&E, the first Dr was still talking about possible eating disorder/mental health issues and then the paediatric reg turned up, and said, I think she's got an IBD. I could have hugged her at that point. It took a couple of weeks in hospital to find the right drug that worked for her, but it completely turned things around. She's now on a fortnightly injection (like a disposable insulin pen) which she does herself, and will likely stay on that unless anything changes.

Scopes on kids are done with a GA, my DD has had 2 and they have been absolutely fine, the least traumatic part of her hospital treatments. She hasn't had one as an adult and isn't keen!

I hope you get to see the consultant soon, and yes, I hope it's a gastroenterologist!

Thank you for sharing about your daughter’s journey. I’m so glad she is doing so well now.
yes it’s going to be a gastroenterologist at the children’s hospital - so we are heading in the right direction and we are being taken seriously. Thank you for describing the scope too, thank goodness it’s done by GA 😊

My godson has UC diagnosed age 9. Hes fit and well and plays every sport under the son and his medication is so far very effective. The six months to get to
diagnosis where very stressful for his parents and him.

With calprotectin that high it will almost certainly be IBD.
My son was diagnosed with Crohn's at 8 with extensive inflammation and ulcers throughout his digestive tract and large bowel ( later in his small bowel too ).

Scopes will be required to see whether ulcerative colitis or Crohn's. Always done under GA for children.
My son is now 24 and really well on a biologic.

With cutting gluten out, it isn't necessarily that that is the problem. Before my son was diagnosed I found it was the tomato in things like pasta and sauces that was the problem. Even now if he is flaring these trigger symptoms, but when in remission he can eat anything.

Gosh your poor DS. So pleased to hear he is doing well now on treatment. Symptoms have eased since we cut out gluten but hard to know at this point if it’s the real cause. Just want this appointment to come round quick so we can get some answers. Thank you for your replyx

@Bubbean wel I do feel for you - nothing is more stressful than worrying about this sort of thing although I’m sure you will get to the bottom of it soon enough ☺️
I would try and push for an allergy test then at least you’re not worrying if you’re making him shakes or juices that you’re feeding him stuff that’s irritating him, My DD had hers at UCH.
good luck x

With his ffecal calpro that high and blood it sounds like IBD they should be getting him a colonoscopy assp? My son had the same and within 2 weeks he got a diognosis of UC

Do you mind me asking how your DS is doing now? Is treatment effective?
Thanks for your message

Thank you for your message- it’s good to hear positive stories of treatment working. He’s had. An ultrasound that was clear. I assume colonoscopy will be the next step once we’ve seen the Consultant at the children’s hospital. He had a nasty case of norovirus just a few weeks before the calprotectin test was taken which our current paediatrician suspects could be the reason for it not coming down but we still need to fully explore as he is clearly not right.

He has been taking 2 tablets a day for the past 4 years and in complete remission, we are very lucky!

he has just done his gcse had almost full attendance at school

everyone is different but positive stories really helped me - I posted on this very site originally and was beside myself with worry! X

Getting a diagnosis will be the worst time for you and your son. 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.
The good thing is it’s the gastro team for your son next.
I remember the awful time my daughter had the year leading up to a diagnosis of Crohn’s disease age 12.
However once diagnosed and put on treatment she recovered in no time at all. She too was put on fortnightly injections that she does herself.

7 years on and now age 19 she has had an amazing 7 years symptom free and lived a normal active life taking part in all school activities and trips away skiing etc. she never missed a single day off school except for hospital appointments which was three a year. She got very good grades in her GCSE’s as well as her A levels. She is off to work at camp America this Saturday for 10 weeks two of those weeks will be travelling round. She will be home for two weeks then off to uni for three years.
I know not all kids go into remission and stay that way for many years but they can have a normal active life a lot of the time.

The timing is important for your son as I assume he will be going into secondary school in September. You will need to push for the procedures to be done that will get him a diagnosis so please explain these concerns to the gastro team.

Wishing you all the very best in getting a diagnosis as quickly as possible so that your son can start treatment that will give him his life back.

Thank you, it’s so interesting to hear other families experiences. We have an appointment in 10 days .(not that we are counting!) He had induction week at his secondary school and it’s been so hard. He barely wants to eat and it’s been an emotional struggle. So much so we are not sending him there last two days as he was such a wreck last night. Just want answers now and before September ideally!!
thanks again x

I really feel for you all because my daughter was exactly the same age whem she was having symptoms. It is such a worrying time but you get a diagnosis if it is IBD and treatment begins hopefully things will be brighter.

In the meantime take a look at the children’s charity CICRA. It is such a useful charity for children with IBD and they really helped me in the early days. Lots of information on their website on getting a diagnosis and information on secondary school and what to tell them etc.

Any questions please don’t hesitate to ask. I know exactly what you are going through and it really helped me habing others to talk to.

CICRA: better lives for children with crohns and colitis

That’s the charity website.

Oh gosh I am useless with technology thought I had posted the link🙈You will find it on google.

If he’s hyper mobile have you looked into Ehlers Danlos?

This is so helpful I will take a look. I just want to cry myself …bloody awful time x

I mentioned it the consultant but she didn’t seem to think it relevant. I will mention to gastro when we see him. I did read about and wasn’t sure he fit the criteria. I will put it on my list though!!
thank you!

Aww I totally understand and honestly I am happy to help with anything and any wuestions or just to chat.
You can even call up Cicra charity to have a chat with getting a diagnosis, they are lovely helpful people and really helped me at the stage you are at now.
You look after yourself too though. Xxxx

My 15 year old is currently going through testing for this, so far we’ve had bloods, stool tests and ultrasound. He’s having endoscopy and colonoscopy next week and MRI’s hopefully not long after.

I found with the first appointment at the children’s hospital it’s just a “get to know you” appointment so the gastroenterologist can hear it for themselves, but as it’s their specialty they understand better and are used to understanding children.

I have also been taking ds to my local hospital if he is in pain, by doing that they have managed to put him through as an urgent care case. We haven’t gone in this week but the previous 2 we went in 3 times, I’m assuming that was a flare up.