Chrones / 12 year old

[Remmy123]

My DS is about to be diagnosed with Chrones ( colonoscopy end of month)

I have been reading all about it on the net and i am in a state of panic now as it sounds like his life will be very difficult.

The consultant seems to think it's very mild (diarrhoea is his only symptom) no pain/weight loss etc Obviously cannot be sure until the scan.

I just need help putting this into some sort of perspective I feel panicked by stories of stoma bags and hospital stays etc 😢

Thank you

I have ulcerative colitis and took a long time to be diagnosed as I just did not present as being ill. My only symptoms were diarrhea and occasional bleeding.

Even at my worst, leading up to diagnosis, I was in no pain at all. I have been medicated for about three years now with no significant issues.

I initially joined the Crohn's and Colitis Facebook page but came off quickly as it just seemed so extreme.

There are varying degrees but just wanted to give you my side of it. Wishing you both all the best!

Thank you - good to hear positive stories. Glad you are doing well.

What I am reading is also extreme and has sent me into a state of panic/anxiety

Easy to say but step away from Google! Take each day and appointment as it comes and deal with it all one step at a time!

I have UC

Don't panic too much right now and stop googling until you have seen the Consultant, treatments move on quite quickly, your son is young and sounds like he is fit and healthy in himself.

Your son may never have another flare

and btw, although I will admit to be terrified of getting to the stage of having a stoma bag, I have a very good friend with one who says it is the best thing ever, it gave him his life back 30 years ago and never worries about it (good career, marriage, 3 kids etc) so I take heart from someones experience.

Thanks all

If he wasn't at home from school I wouid have no idea, thankfully he isn't suffering - hope it stays that way.

He had the same thing 2-3 years ago and consultant said it was a bug - wish I'd pushed for cameras then 😬

@Remmy123 my ds then age 13 was diagnosed with Crohn's a year ago. He had pain and wweight loss as well as diarrhoea. He looked awful. I'm happy to say that once on the correct treatment he hasn't looked back - growing, gaining weight, really thriving. Cross fingers it will continue.

There is a very wide spectrum of disease so please don't assume the worst for your son especially if they are thinking mild disease now.

I know it is terribly worrying but I have found it best to stay off the Internet and take it day by day and not look too far ahead. Good luck.

@helpmum2003 thanks so much and I am glad that your son is doing so well! Reassuring to hear.

The lead up to the colonoscopy I was Googling like mad snd I ended up making myself very sick with worry

I'm not googling anything the moment as I need a break and seems unnecessary right now as he is fine at the moment, thankfully.

@Remmy123 I'm glad to hear that. Take care.

I have chrons, diagnosed in my 30s but with hindsight have ignored symptoms for years. I was very ill when diagnosed, treated medically with tablets and had 8 years of remission. Am on weekly injections now but it’s not quite hitting the mark so looking at a limited surgery. It’s easy to look at the worst case scenario but I have an executive job, 3 kids and am fit snd healthy apart from my chrons, it really can be managed snd he will learn to listen to his body as time goes on xx

Thanks for your responses - he has been diognosed with U Colitis and is on a mild medication currently and is very well.

Will try not to look too far into the future and hope it stays mild!