Colonoscopy & Gastroscopy

[Clarej121]

Hi There
I'm starting to feel anxious as Bailey is going into Southampton Hospital tomorrow for A Colonoscopy & Gastroscopy.
They are checking how things are as nothing is helping his Crohn's still 1 year on from diagnosis..
He has had 3 Infliximabs
Usual meds.. Aza, pentasa, omep, modulen,

Its a 2 hour drive & its just me taking him as my husband will be home for the other 2 etc..
Scared i will fall apart if anything un toward is found.. Whats the worse i can be told?
I hope he doesnt come round with NG again as he has done 8 months out of 12 not eating. Big inconvenience for a 14 year old lad.

They may have good news & see an improvement.. Which they will say is all they are doing & not the Chinese meds hes been on for 3 weeks now..
Got a great feeling about them, i trust the herbalist for some reason.

Sorry i only come on here when im worried!!
I hope soon i can give some support on here, would be useless right now..

Fingers crossed
Will report back on the results if ok x

Clare xxx

 

[Misty-Eyed]

Aww Clare. I'm sure he'll be ok. It's very unlikely that they will find anything untoward. Especially if he's only had Crohn's for a year. He's very young still! I had loads of colonoscopies when I was younger. I used to go to Great Ormond Street. My biggest worry used to be if I'd have underwear on when I came around! (I'm very funny about my underwear!)

Colonoscopies are very routine and are often used just to see what's going on with the crohn's. How bad the inflammation is and where the inflammation is so they can treat him better and see how well the medication he's on now is doing.

Do you get to go in with him or do you stay outside? My dad used to come in with me and tell me that they could see the light from the scope on the outside of my belly making me look like E.T. Then I could take the pics of my scope home with me which I thought was brilliant.

Everything will be fine, I'm sure of it! Let us know how it goes

 

[Clarej121]

Hi Michelle,
Thank you for your kind words, i suppose getting used to these procedures is the way forward. The only way of seeing whats going on etc.

We have never been given the option to go in with him, he has GA.
Also both ends at once, not the best time to see him..

Your right i'm sure there is nothing serious going on, this will be his 3rd in a year.
Always comes out of theatre with an ng fitted..
Which is horrible as he feels the decision is taken away from him, but they are the experts..

You were extremly young to have it, do you feel your childhood was missed?

I have a 17 & 8 year old & i beg they don't inherit it!!
I will have to ask them for some pics as Bay never seen them.

I love your qoute & it is so true.. I have dine nothing but worry about his future for the last year...
I do feel i have turned a corner & i have more positive thought than before..

Will post on here with how it went

Take Care
Clare x

 

[Misty-Eyed]

Anytime!

By ng, do you mean a nasogastric tube? If so, I've never heard of one being out in during a scope. I had one when I was 12 and on an elemental diet but I could put it in and take it out by myself. Not being allowed to eat is horrible. I used to cry every time they mentioned liquid diet to me.

I do feel a little bit like it was missed, yes. I was extremely ill for a year before being diagnosed and then for years I swung through periods of being well (when I was a high dose of steroids) and being really ill. I had lots of complications too like a kidney stone and shingles when I was on steroid so was in hospital a lot. I ended up seeing a child psychologist when I was 12 from being on the liquid diet and being bullied at school. My poor parents really had a lot to cope with as I had two younger sisters (one with downs syndrome) that needed looking after too!

The good news is, is that I did get better in the end and funnily enough, got better all by myself. Plus I'm actually glad I was diagnosed at such a young age because I've grown up knowing how to deal with my Crohn's. I know what to expect and I'm stronger because of it. I've learnt to have a positive attitude to life and I dont take much for granted. I finished my degree and have a full time job which I love. I've only just had my first surgery for my crohn's but everyone has been very impressed with how I've handled it mentally.

I'm sure your son will be the same. Of course there will be bad times but it make you enjoy the good times that much more. I hope he gets on well and won't come out with an ng. He'll get there

 

[Clarej121]

Hi All

Firstly i'd like to say to Misty-Eyed how insperational you are to anyone associated with Crohn's disease.

I said i would report back to how Bailey's scopes went today.
To be honest i didn't think i would be sat here now writing this, as i feared something horrible was going to be found.
Not a negative person at all but i guess its my self presevation.

Good news i'm told!!!
His ulcers are healing!!!
He was pickled from mouth to Anus 7 months ago..

They say it's the Infliximab & to carry on having 8 weekly infusions.
I think its the herbs helping too.. But who cares what, it just is!!

I'm still slightly confused as Bailey still experiences bad pains & cramps after toileting.
I guess the ulcers are only part of the disease??

Anyone with similar experience or knowledge would be great to hear from you..
We don't know wether to celebrate or keep him calm & on a level.

His consultant is very much into mind over matter!!! Annoying really

I think he would make something rosy if the child felt better..

If Bailey gets stressed Dr Beattie has a hissy fit..

Wish i hadn't started the herbs yet as i don't know which is helping more...

Anyway relieved to be home with Bailey & my family
Clare
XX

 

[Misty-Eyed]

Thank you! You made me blush lol

So glad it went well! I knew everything would be fine What did Bailey think of the results? You can still have inflammation without ulcers. Maybe he still has bits of inflammation that are playing him up. You'll even find people who don't feel great where they don't find anything via a colonoscopy. I even had the opposite for a while, I felt great but my colonoscopy showed I wasn't on the inside. Crohn's in a very strange thing at times.

I just hope things continue to improve for Bailey

 

[Misty-Eyed]

Also I forgot to say, there is a parents subforum on here if you've not already found it. A lot of parents there are very good with the emotional support and know what you're goin through