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

If they admit him, and hopefully they will, then things should start to happen quite quickly. I won't pretend being in hospital was fun, esp not for ds, but having all the medical care he needed on hand was a relief. As an outpatient the difference parts of the service - gastro, dietician, blood testing etc can be quite disjointed.

He's going to be admitted which is actually a relief although he's saying he wants to go home which is breaking my heart @ReallyShouldBeDoingSomethingElse thank you, that's helpful. I just feel sad that he's got to put up with this so young. I have 2 chronic autoimmune diseases but I was 21 and 29 when diagnosed with them so I felt more equipped to handle it

I know a few people admitted for scopes via A and E. It's the best place for him. In a few days hopefully you'll both be a lot better.

I am so glad he is being admitted, I wasnt sure if they were going to send him home to wait for his appointment in June as many of times I have heard of this happening. Obviously it's not want he wants but his symptoms need to be investigated.
Sending hugs and strength to you both.

Which hospital are you at out of interest?

Hope you are getting on ok - & tomorrow gets some answers.

@Lbet I think it was another poster who has to wait until June, I'm so glad it's not that long for us!

We're at the RVI in Newcastle which has a fantastic children's hospital so we're in very good hands

Oh I do apologise I am getting mixed up.

Hope you can both get some rest tonight.

Please keep us posted. Xxx

Lots of blood and stool samples taken. They strongly suspect IBD and he's got to have an emergency endoscopy tomorrow. Lots of information flung at us and it's all really scary. They said the amount of blood he's passing indicates his bowel is extremely inflamed which puts him at a higher risk for complications during the procedure. Lots of tears but we know it's the best for him. We just need to get through the next few days

So sorry your boy is having to go through the procedures but after this you will have answers and a treatment plan put in place.

Take care if yourself too.xx

Hope the scopes go ok. My DD was bleeding so heavily and was so ill when she had her's but it went well and we got the initial diagnosis once she had woken up.

Hopefully once the scopes have been done they will be able to go through the treatment options with you.

We had decreasing dose of steroids plus azathioprine and pentassa first and got things well under control very quickly. It was very up and down though because she started hiding the medication instead of taking it and she came out of remission.

She's now been in remission for a year now thanks to infliximab infusions every 8 weeks.

I knew absolutely nothing about IBD when my DD got sick and that made me so scared. The more I know the less frightening it seems.

Hope you get some answers tomorrow 💐🧸

I always feel so sad when I see little ones with it :( I have UC.

The Crohn's and Colitis UK Facebook group is a great place for asking questions. It's private too so none of your FB friends can see what you're asking. There will jo doubt be a support group for parents:

If he's being admitted and having IV steroids he will start to feel a lot better quite quickly. Can you stay with him?

Wishing you both lots of luck and strength.

We are all thinking of you city and your little boy. We have all on this thread been in that situation of being desperate for answers and for someone to listen and DO something....once you get a diagnosis you are well looked after. ((Hugs)).

Thinking of you!

cant remember if I have reolied on this thread but my son has UC and is doing really well x

Hang on in there @webuiltthiscityonrockandwheat . Its a rough and scary ride to begin with but the treatment options are so much better now than they were even 15 years ago

Thank you everyone. He's had an ultrasound done and we're waiting for his endoscopy this afternoon. He's very fed up but can't even muster the energy to get up now. I'm exhausted and scared about the procedure with all the potential complications but I feel once we get through today we'll be on the way to treatment

Try not to worry too much. The risks of endoscopy, even with an inflamed colon, are fairly small. I once asked my consultant how often he'd encountered serious complications during endoscopy and he said it's really quite rare. It's something like 1 in every 3000 and bear in mind that many endoscopies do take place when the bowel is in a very inflamed state because that's how most urgent endoscopies come about.

DS finally has his endoscopy this afternoon. Diagnosis of severe ulcerative colitis which is scary but I feel like we can move forward now and get him better. Thanks for all the support, I'll definitely check out the Facebook groups

I am sorry you have been given that diagnosis but I am also relieved for him knowing he can now have the treatment that he needs.
We were told on diagnosis that our daughters was severe cronhs,however she recovered so quickly and like I said has remained in remission for five years.

Don't forget to also check out Cicra children's charity for IBD. They are so helpful and can arrange for a parent who's child also has IBD to give you a call if you want to talk.

Always here if you want to chat. Xxx

I'm sorry it's not what you wanted to hear and yes it is really scary and will seem very overwhelming when they call you to discuss treatment options. But it does get easier. My daughter has had no symptoms for a year now that we've found the right treatment. Apart from having her infusions every 8 weeks she is a normal teenager.

Fingers crossed you get a good gastro consultant with a helpful IBD team and they find the right treatment for him quickly.

How's your boy doing is he on treatment now?
How are you doing too? So much to take in.

Sending best wishes and hugs.

@Lbet he's doing ok thanks. We're still in hospital and he's had 3 days of steroid infusions. I'm hoping we might get home today but I'm not very optimistic! We're seeing the gastro team this morning so they should have some more answers for us I think. He's being a star but is very bored and fed up now

Great to hear, the steroids did a great job on my daughter and with your son having the infusion means it will kick in a lot quicker.

Hope he gets to go home soon. X

Strange isn't it? First we are desperate to get them into hospital to get treated, then we are longing to be home. Hopefully it won't be too long for you. Have they talked about onward treatment yet?

How is your son doing now?