Dd having endoscopy + colonoscopy, worrying!

[Sparklingcurrant1]

Hi
so due to chronic debilitating abdominal pain, my dd is having an endoscopy & colonoscopy done under general anaesthesia. I'm just worrying so much as the thought of her getting intubated is so scary to me. She's been intubated twice before for surgery and she was fine so I don't know why I'm worrying excessively now?
im also worried about the actual endoscopy and colonoscopy. I wish we didn't have to do this but we're not able to get anymore answers as to why she's in such excruciating pain without doing this 😢

Hi Op, my DS (8) was in the same boat recently. My DD has coeliac disease and so, as DS’s levels were mildly raised for coeliac, he had to
have an OGD (he had no symptoms at all except a bit of diarrhoea when he ate weetabix). He had the OGD at Bristol childrens and I was terrified - mainly because it was his first time having GA. The team were great tho - DS has a phobia of needles so they put him out using a mask and then cannulated once he was asleep, which really saved a lot of tears on our part! DS was gone for about 45 minutes and then back and all fine (he was sick a couple of hours later but think that was due to the GA and likely nerves).

My DD didn’t need an OGD only because she read SO coeliac - she had an awful stomach and her heartburn would have her doubled over in pain. Has your DD had a blood test to rule out coeliac? As I say, only DD showed symptoms (we were palmed off by GP saying DD was making it up…) and the shocker was DS having it as he was fine. DH and I are clear of it which is more bizarre!

If I were you, call the childrens ward where she is going as they may be of more use with the info., or a secretary. Also, make sure the surgeon does NOT discuss the risks of the op (perforation, bleeding etc - all of which are super rare) as this terrified DS and made it really difficult to keep him calm before the op.

Hope it all goes well and you get the answers you need 💐

• sorry, I meant make sure surgeon doesn’t discuss the risks in front of your DD - our surgeon did and it was awful as DS is a worrier and was terrified something would happen. When they come to talk to you, ask if DD can wear headphones or go to the toilet as they are too little to understand that the risks are super rare and it won’t help keep them calm. I flagged this with Bristol Childrens as I felt DS didn’t need to know and it meant waiting 5 hours for the op with a very anxious boy.

How old is your dd? My ds had this procedure under GA when he was 10. He was ok with it as he knew he needed it to find out what the problem was. As he was older he waited quite a while before being taken to theatre as they take the younger ones first. He was really dehydrated and lethargic due to nill by mouth. Take things in to keep dd occupied while waiting.

The actual procedure was ok, they were fantastic with him, it wasn't too long until I was in recovery with him amd he was fine when he came round and treatment was started.

The worst part is the bowel prep. That was awful for him, make sure dd drinks plenty of clear fluids up until the cut off time.

Its a scary and anxious time for a parent but they can figure out what's wrong and help with the pain.

Sending lots of luck to ypu both x

My son had his first scopes when he was 8, and many more since. It is never easy watching your child go through this, but it is okay. They aren't in theatre for long, and as soon as they come round you can join them in recovery. The younger children always go down first. Ask for Emla cream to be put on before any injections as this helps.
The bowel prep is the worst part of having scopes. Make sure you follow to the letter how to do it.

My DD had these scopes aged 11. The prep is by far the worst bit. They are under anaesthetic for about 45 mins iirc and the consultant came round with results after the morning session.

Dd was admitted after her scopes for a week, which we weren't prepared for. Might be worth packing an overnight bag and having it ready in case.

@Londonnight Thank you all soo much for your comments and advise, it's been very helpful. @Jaybird43 i will definitely make sure to tell them beforehand not to discuss any risks infront of her. She has had all the tests done for celiac, any other possible intolerances, inflammation etc all her blood work and stool samples come back clear. The last 2 months she developed intermittent bleeding from the bottom, which triggered the referral for the endoscopy and colonoscopy to find out what's happening. Although they don't expect to find something sinister as her weight has gone up and not down, but I guess we'll find out in a few days from now when she has it done.

@Catclown she is 7yrs old. Aha I see, hearing from all of you is definitely making me feel less anxious about this. Yes I'm not looking forward to the bowel prep at all, it's difficult to see her struggle.

@MumofCrohnie oh do you mind me asking why they admitted her? I will prepare a bag definitely, thanks for the tip

Sure. They found clear evidence of Crohn's disease, and the first line treatment is 8 weeks on a special liquid diet. In dd's case her weight was low enough that they were concerned she would develop a condition called refeeding syndrome, so she had to have daily blood tests and stay in hospital until she was safely established on the liquid diet.

@MumofCrohnie oh I see! I'm so glad they were able to find the cause and give her appropriate treatment. Did your dd have any blood/stool tests pointing to crohns prior or did they just discover it during the procedure? Thanks

My son was diagnosed with crohns too, he was sent home though and started on the liquid diet from home, it didn't work out for him so he ended up on steriods.

He had high calprotectin levels in stool but his bloods were normal.

Really hope you get some answers soon, sometimes the wait and wondering what it could be is worse than the actual diagnosis x

Hi, yes she had bloods before which showed signs of inflammatory bowel disease. They suspected Crohn's because of her symptoms.
The other major IBD is ulcerative colitis, and the liquid diet isn't indicated for that so they often start with steroids or a rectal foam treatment.