Help .. child with possible Crohns/ Colitis

[silverfox46]

Looking for some advice as my head is all over the place and so many questions. I recall another dibber who’s son also suffers and thought would shed some light for me.
My gorgeous little grandson just 8 at Christmas has had severe diarrhoea and tummy pains for a couple of weeks. First put down to viral then bacteria infection. Admitted to hospital where multiple tests done. Long and short today they confirmed neither of above but to transfer him to the RVI in Newcastle to decide whether Crohns or the other 2 options. We know it’s chronic disease but what can we expect.
Apologies for such a long post but trying to come to terms how a fit and healthy young boy has this happen to him

[lovemickey]

Sorry to hear this, hope he’s doing as ok as he can be. That’s a lot to cope with at a young age. Think the dibber you’re referring to is Floridatilly.

[silverfox46]

Originally Posted by lovemickey

Sorry to hear this, hope he’s doing as ok as he can be. That’s a lot to cope with at a young age. Think the dibber you’re referring to is Floridatilly.

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Thank you, I think it as, being racking my brains thinking. It’s so hard to take in atm

[Floridatilly]

Hi, so sorry that your grandson is going through this, I really wouldn’t wish it on anyone 😢
Sorry to assume but I imagine they did calprotectin levels in his stools to suggest Crohn’s/colitis?
This is what happened with Mason but nothing could be diagnosed until he had the colonoscopy & endoscopy done (which kept getting delayed due to covid).
With Mason’s diarrhoea he was constantly loosing mucus and if he broke wind he would follow through which was really distressing for him.
But if your grandson has only had symptoms a few weeks they might hopefully catch it quickly 🤞🏻🤞🏻
The consultant told us immediately after his endoscopy & colonoscopy, he was put to sleep for this but the medicine they need to take beforehand to clear the bowel is rather disgusting but its worth it to get answers x x x

[silverfox46]

Originally Posted by Floridatilly

Hi, so sorry that your grandson is going through this, I really wouldn’t wish it on anyone 😢
Sorry to assume but I imagine they did calprotectin levels in his stools to suggest Crohn’s/colitis?
This is what happened with Mason but nothing could be diagnosed until he had the colonoscopy & endoscopy done (which kept getting delayed due to covid).
With Mason’s diarrhoea he was constantly loosing mucus and if he broke wind he would follow through which was really distressing for him.
But if your grandson has only had symptoms a few weeks they might hopefully catch it quickly 🤞🏻🤞🏻
The consultant told us immediately after his endoscopy & colonoscopy, he was put to sleep for this but the medicine they need to take beforehand to clear the bowel is rather disgusting but its worth it to get answers x x x

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Thank you for answering. Sorry if this is all muddled but m all over the place. He complained of tummy aches about 3 weeks ago, doctor said probably viral infection. Then started bloody poos so sent to hospital who said yeah viral and sent home 🥺. Poos became about 3/4 times an hour and always a bloody/ mucus mixture. Re admitted after 4 days , put on drip and anti biotics through drip. He really picked up , is eating well so they thought a serious infection. Sent home yesterday, poos not so frequent and a little tummy ache. They did a fecal ( I think it’s called that ) and said results upto 1000 will confirm that, anything over shows Crohns/ colitis. His result they called today with was 2209 😥. Needs a blood test booked for next week then up to Newcastle.
I know it’s a long rambling post sorry, but what happens next, how soon you get results and everything that goes with it.

ETA, sorry I re read and realised you answered some of what’s next but how long was Mason in for with procedure and after. WAs treatment started straight away, I’m trying not to ask my daughter as it’s broken her and I need to be strong around her

[Floridatilly]

I have just PM’d you 💗💗

[TheHughesCrew]

Firstly, big hugs to you xx

Secondly, I work with a lot of Crohns/ Collitis patients (although mainly adults) but what I can tell you is these diseases vary SO MUCH from person to person. It's very different to a lot of things that follow a fairly specific path. And so, so many different drugs, that will depend where along the bowel the problem is. And what works for one person, has little to no effect on others. Im just saying this because you will undoubtedly get someone saying 'my friends sisters aunty has x drug, its amazing, changed their life' ... but may be totally unsuitable for someone else xx

Find out the details of the consultant, the IBD team, their helpline number, and who to contact when there's a flare up. It's such early days yet, it can take quite a lot of weeks to get treatment sorted.

Hugs xxx

[silverfox46]

Originally Posted by TheHughesCrew

Firstly, big hugs to you xx

Secondly, I work with a lot of Crohns/ Collitis patients (although mainly adults) but what I can tell you is these diseases vary SO MUCH from person to person. It's very different to a lot of things that follow a fairly specific path. And so, so many different drugs, that will depend where along the bowel the problem is. And what works for one person, has little to no effect on others. Im just saying this because you will undoubtedly get someone saying 'my friends sisters aunty has x drug, its amazing, changed their life' ... but may be totally unsuitable for someone else xx

Find out the details of the consultant, the IBD team, their helpline number, and who to contact when there's a flare up. It's such early days yet, it can take quite a lot of weeks to get treatment sorted.

Hugs xxx

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Thank you, yes I know my mind is going places I don’t want. I’ve tried so hard not to read DR GOOGLE as he’s a fit and healthy child , doing kick boxing and hopes to become a free runner when he grows up. Today he’s chatty, hungry and cheeky as ever, so it’s hard to envisage what’s hidden.
Thank you for your advice

[Floridatilly]

Originally Posted by TheHughesCrew

Firstly, big hugs to you xx

Secondly, I work with a lot of Crohns/ Collitis patients (although mainly adults) but what I can tell you is these diseases vary SO MUCH from person to person. It's very different to a lot of things that follow a fairly specific path. And so, so many different drugs, that will depend where along the bowel the problem is. And what works for one person, has little to no effect on others. Im just saying this because you will undoubtedly get someone saying 'my friends sisters aunty has x drug, its amazing, changed their life' ... but may be totally unsuitable for someone else xx

Find out the details of the consultant, the IBD team, their helpline number, and who to contact when there's a flare up. It's such early days yet, it can take quite a lot of weeks to get treatment sorted.

Hugs xxx

See more...

This is 100% true. I pestered our IBD team constantly at the beginning 💗

[Floridatilly]

Hi, I have tried to send a couple of PM’s today but they are not showing as sent 😬