Talk to me about stoma's (specifically Childrens )

[princesssugarless]

My teen son had an accident 2 weekends ago and has ended up with a temporary colostomy. We are still very new to the whole thing and luckily he is on half term but he is struggling to manage the bag.

I suppose I am just asking for hints and tips, what works best, what doesn't if anyone has any insight.
He is terrified of friends finding out, of the bag making noises, smelling, exploding etc. we are trying to just work through his issues with h as they arise but it's quite a bit adjustment for him .

Any lovely people with advice?

@takemetoyourdollshouse thank you. I'll look up vanilla blush - that sounds good.

Thank you to everyone - the advice on here is invaluable to me and my son - so much I hadn't thought of and makes me feel much less alone with it all.

Definitely going to look up the sprays on prescription - the smell of febreeze is getting too much......

@Rosecoffeecup - thank you!! I will have a look

@swanling - fab thank you for that, really useful

I’m really sorry you and your son are going through this. The noise he can hear is probably like your tummy rumbling. He can hear it but no one else can.

it’s a tough time for him as a teenager but it’s still so new to him. As time goes on hopefully it becomes 2nd nature.

What a shock for your son - poor lad. My stoma nurse told me it can take a year or more to really get used to having a stoma. It sounds like your son won't really have time to get used to it before it's reversed.
I don't know if anyone's mentioned the charity colostomyuk which has a website with a lot of useful information https://www.colostomyuk.org/

Thank you @BTMadmummy hopefully - at the moment he won't even look at it.

@corlan think that's part of the problem tbf he know it is going so feels he doesn't need to 'deal' with it. We'll get there (probably about a week before t gets reversed...)

https://meplus.convatec.co.uk/everyday-life/caring-for-a-child-with-a-stoma/
I don’t know if this might be useful?

Loads of great advice - my daughter had a stoma (but isn't a teen)

Definitely lean on the stoma nurses for support for everyone (you included)
The hospital will also be able to make mental health referrals if he feels he'd like to talk

Also, recommend getting a radar key, then when he's out and about he can access the disabled toilets

He may find the hotter weather messes with the effectiveness of the bags stickiness - advise having more bag at the ready on the hot days

Oh yes I forgot a radar key he can get 1 free from his delivery company or his product provider or the colostomy society.

I was the same OP. I completely refused to look at it. Would turn away when the nurses came to empty / change it. I had cancer, which is why I ended up with an ileostomy, but having it was still unplanned so I had maybe half an hour between being told I needed one and being wheeled down to surgery. The multiple surgeries and several rounds of intense chemotherapy were much easier for me to handle mentally than the ileostomy bag. It is a huge huge adjustment.

But with time, he should hopefully become more confident. He will get there. I was in such a bad way when I first got it, but it ended up becoming as easy as brushing my teeth. My thoughts are with you all.

This group is usually very good. My husband has a stoma.

DS has an stoma. He's 14 now but was 11 when it was done as an emergency. He copes well, but it will be very hard to keep it secret at school.
The output can really smell, and not like poo, so using shared toilets could be an issue. Access to a private bathroom would be good if it can be arranged. It will be hard to hide when changing for PE and being careful in contact or ball sports if he plays them. And leaks happen, so he'll need supplies and a change of clothes at school.
I'd wouldn't rush back to school in your shoes. Would temporary home schooling work until he's comfortable with stoma care? How long is temporary?

Very random suggestion but could you put a clean one under your clothes to demonstrate to him that nobody can hear anything?

Poor lad. Hope he manages to come to terms with it, and gets better soon.

Look up a Bear Named Buttony, it’s a charity that donate a teddy with a stoma for little kids and for teenagers a wash bag full of non-medical items to help adjust to life with a stoma. They offer advice and support too. Good luck to you both.

I have one permanently hence the user name...
I wear big pants. I didn't get on with a belt even though my stoma is quite flat. It tends to leak sideways but I feel it and just sort of 'know'.
I am a teacher and take a ton of loperamide and other bits to slow me down as have short bowel as well as crohns.
I avoid anything with a skin and I learnt which foods start me off eg anything diary.
His skin may get sore round the stoma so keep an eye on it. Use the spray/ cream.
I have a great team of stoma nurses.

Lastly it's a trauma. I expected mine as was really unwell and desperate for reprieve. I can't imagine the shock of waking up with one not expecting it. It can be sore and feel odd. I have nothing but admiration for you both. Hopefully it won't be with him long.

Oo a radar key is a good idea - he's refusing to leave the house at the minute. That might give him a bit more confidence

Thank you.

We are talking to the school next week, at the moment he couldn't go back as he can't take care of it. Hoping this week might be more normal for him. Home Ed wouldn't work as we are both out of the house most of the day at work, I dread to think what my mum would teach him...... 🤣

Poor kid has been through too much don't push him, maybe some home schooling would be best till the end of term?

He could get work sent home maybe the LA could provide a tutor talk to the school. He might be able to go back on a restricted time table.

After 15 days of missed school the La have a legal need to put in place a suitable alternative education. Some sort of home tutor/hospital school access should be arranged to meet his needs.

You can also buy them very cheaply off Amazon or eBay if it's easier than working out how to get one through the stoma nurse etc.

Sorry to hear about your sons accident hope he's recovering well. My little boy had a temporary stoma he was only 4 months old until he was 1 so luckily didn't have to deal with school. But echo the advice about radar key, easy access to toilets is a must and school must give him a toilet pass. It does get easier, trial and error, get the stoma nurse actively involved and he'll find a solution that works for him I'm sure. Loads of positivity on Facebook and Instagram of people with stomas too. Hopefully they will put his mind at ease about people's reactions.

What a shock and a huge adjustment for a teen. Poor lad.
My child had one (for 18 months) as a toddler and it took a LOT of getting used to for us. Over time you learn the knack of emptying/changing etc but it’s a steep learning curve.
I second what others have said about him having home learning for the rest of term. I wouldn’t personally put a child through going to school and having to get used to a stoma for such a short period of time. We all know how hard school is at the best of times.
Good luck OP and your boy x