Potential IBD

[webuiltthiscityonrockandwheat]

DS (5) has had some blood in his poo recently and a stool sample has shown some inflammation in his bowel which needs to be investigated further. I know they're looking for either crohns or ulcerative colitis which both sound quite scary for such a little person. He needs a referral to a paediatric gastroenterologist and will likely need a camera to see what's going on.

Does anyone have any experience of this in a young child? He isn't a fan of the doctor at the best of times and I'm so worried about how he's going to handle all this.

He's already being seen for motor delay and potential ASD so this just feels like something else to add to the list

Hi

Not as young as your son but my daughter was diagnosed with crohns age 12. She first had bloods and stool sample tests. The stool sample showed high inflammation so she had a colonoscopy and an endoscopy,so a camera down the throat and a camera up the bottom.
She knew nothing about it as she was put to sleep. It was from that crohns was diagnosed.
She was absolutely fine after the cameras and was just glad to be able to eat.

My daughter went straight onto treatment for crohns and has led a completely nomal active life for the last 5 years. She is 17 now and really is doing great.

We know of many young children with IBD the youngest being 18 months old.

Please feel free to ask any questions.

Hi, I've recently gone through similar with my 6 year old; he's had a funny tummy for years and had raised calprotectin in his poo, passed blood once, and mucus on a semi-regular basis.

We saw the consultant gastroenterologist who said firstly IBD is very rare in children this young, and it was more likely to be something like a mild dairy allergy. We're currently half way through a 2 month dairy-free trial which does seem to be helping, and my son's most recent stool sample was completely normal (things like infection can raise calprotectin levels too.)

Hope you end up having a similar outcome, I dreaded the thought of the invasive procedures used for diagnosis, along with the implications of having IBD, and am so happy other routes were taken first.

Two kids with Crohn’s. Definitely an emotional rollercoaster and a lot to take in. Be kind to yourself it is really hard as a parent. An invaluable resource on Facebook is uk parents of kids with IBD. Nice to know you aren’t the only one in that situation, definitely other people dealing with IBD and ASD if that is the diagnoses that you end with. I never thought my son would cope with what he has to go through but he has really surprised us.

Thank you for the advice. We've had to put another sample in and I'm hoping that comes back clear. I'll definitely ask about a possible lactose intolerance if/when we see the specialist. It feels very overwhelming at the moment so it's nice to know I'm not alone!

My child was diagnosed with an IBD when they were 4 years old. It was a difficult time but things are much better now it is more controlled with medication and he has an IBD team to support us which makes a huge difference. The drs and nurses are very good at recognising flare ups and keeping on top of things. The worst bit was definitely the diagnosis - lots of blood tests and camera scope to investigate the bowel/biopsy. However since then he has had treatment and things improved dramatically although not quite 100% years on.

I had to push for him to be referred to GI and eventually was an emergency situation before he was properly assessed (he was weak, not eating drinking or playing, wouldn’t walk and would just sleep most of the time, pooing with blood and mucous (sorry tmi) about 20 times in 24 hours). My advice is keep on with getting to the bottom of it.

Hopefully it isn’t IBD though but even if it is it can be managed.

My son also has some quite mild developmental delays and has another condition also which can make things even trickier to diagnose!

Hope this helps x

Just wanted to update this because you were all lovely and helpful. It's been getting much worse over the last week and his paediatrician did an urgent referral to paediatric gastroenterology today. I really hope that doesn't take long, it's miserable. I've read 2 weeks for an urgent referral?

His paediatrician says it could be IBD or coeliac disease. I would prefer coeliac if I could choose but for now I'm just wondering and worrying and googling. He's so little and has some developmental delays and I'm so concerned about him

Thanks for updating us.
I know you don't want a diagnosis of any kind but please be reassured if it is IBD or even coeliac the treatment for these conditions have come such a long way.
I was absolutely terrified when my daughter was diagnosed with crohns disease but once she started treatment her quality of life was so much better than it had been for the previous year leading up to the diagnosis. I really felt like we got pur daughter back.
5 years on she has had the most amazing normal teenage life,if anything it has been tweaking of her oddly enough.

Always here to chat.
Please keep us posted. X

It's been getting worse, he's just having so many liquid poos and he's so weak and tired. I'm worried and scared

Totally understand how worried you are I remember it so well. You feel so helpless.
Have you got a number for the consultant you can call on Monday with your concerns? May rush refferal through.
You will soon have answers and hopefully treatment and your boy will ne on the road to recovery.

Here if you want to chat anytime.

You are on the right pathway for assessment but if it gets so you can't wait another day go to a&e.This is what happened to us last September- ds just got to the end of the road - couldn't eat, couldn't stay hydrated and couldn't wait even a few days more to see the gastroenterologist. He was admitted via a&e and kept in through the whole diagnosis and start of treatment process. Diagnosed w crohns and is also autistic.

A pp is right - diagnosis is the worst part, partly because they are so sick whe they get it and partly because of all the tests (there will be cameras and a ga, ds also needed an mri).

We tried to call the clinic yesterday but obviously they don't operate on a weekend. We'll try tomorrow. He doesn't seem as bad today and he is eating and drinking but he's completely wiped out by the smallest thing. I have no idea what to do about school, I don't think he'll manage full days. It feels like we're in limbo at the moment with no real idea what's going on

If you have to pull him out of school until you see the consultant please do so (and tell them he's so sick he can no longer manage school,). We kept trying to send ds in (he's in Y10 so not great to be missing weeks) but it just made him worse. I have huge guilt about this now.

My DD was diagnosed with Crohn's aged 11. She is so much better. Be aware the first line of treatment is a liquid diet for 8 weeks. Dd found it hard but felt so much better within a fortnight. She was 31kg at diagnosis and now aged almost 13 is 49kg. She has colour in her cheeks and energy again. I posted these pics elsewhere on here just to see how amazing treatment can be. It's a long and scary road, but once they have had the cameras it starts to get better from there. I ended up on anti anxiety meds I was so worried, so I absolutely sympathise.
First is dd is hospital a couple of days post diagnosis. Second is a few weeks ago. You can see in her hair and her cheeks and her colour how much better she is.

@MumofCrohnie great pictures, that really gives me hope. Ds is on the liquid diet now and is still very thin, although starting to gain slowly (3000 calories a day and he only gained 1lb last week 😢).

I'm interested in this as my son who is 4 has been referred to a gastroenterologist with a view to testing for coeliac disease or IBD. He doesn't have his appointment until June though 😩. It's hard seeing them struggle!

@Newuser82 has your son been offered a blood test for coeliac disease? It's something your gp can and should organise if it's suspected.

Hi new user,

It is very hard on awaiting to get a diagnosis. It is so worrying knowing something is wrong with your child and you just want it sorted so that you can get your child back to how they were before.
I have never understood the long wait for children with these symptoms. At least you are on the right track now and your son has been reffered.
When my daughter was reffered the first thing her consultant did was blood test and stool sample testing. It was the stool sample that showed very high calprotectin. From there the actual tests for IBD was very quick.
Then the treatment was started straight away and within days we were watching our daughter recover. Obviously this wasn't a cure as there isn't one for ibd but they can go into remission and stay that way for many months even years.

DS seems unable to eat this morning, he tried porridge and just choked and spat it out. He's drinking though. We are going to call the clinic today but I'm seriously considering a&e

Yes definitely goto A&E you have nothing to lose by going. We have to be the voice for our children and push for action.

Let us know how you get on.

Sending big hugs. Xxx

@Untitledsquatboulder he hasn't had bloods done yet as the gps don't do bloods on children younger than 5. It's been frustrating. We even tried to go privately but couldn't find anyone in the area who would see him as he is so young 🙈.

@Newuser82 yes gp can't take bloods but can refer you to hospital for them - that should take a few weeks not months. Then, if it comes back positive, you can cut out gluten whilst waiting for your appointment in June (Im sure you've been told not to cut it our yet).

@webuiltthiscityonrockandwheat sounds like you've reached the end of your capacity to cope at home. If he can't eat then he needs to be seen today.

My DD has ulcerative colitis and suspected Crohn's. It's so hard and worrying while awaiting diagnosis and getting the correct treatment but with the right treatment it can be very manageable.

There is a Facebook group called UK parents of kids with IBD which is really friendly and helpful. You don't have to have received your diagnosis to join - there are a few parents on there at the moment awaiting test results.

Has anyone suggested camera investigations yet?

We're at the hospital now. The gastro department said to come in via a&e so we're just waiting. We brought a bag in case we have to stay in. Part of me hopes they keep him in until we get to the bottom of it but part of me hopes we can go home. He's fallen asleep on my knee, poor kid is shattered

I'm so pleased for you that they will see him.

Keeping fingers crossed they push it through now.

Please keep us posted.

Just remember although you don't want a diagnosis you will have answers and treatment can start. Xx

I hope you can see the gastro doctor without too much of a wait.

I'd put a pause on any internet searching for now.

I just want to say though that the outlook is brighter than you might imagine with IBD. There are many options for treatment now and they are researching all the time. The initial phase tends to be quite hard work as finding the right combination of meds is trial and error which takes time but once settled on treatment the aim is that you can get on with life as normal.

I've had UC for 13 years. In severe flares it obviously has an impact but these tend to be short-lived and interspersed with long periods of good health so generally life has been great and my health hasn't got in the way of anything.