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?

The stoma nurses are .actual angels even if he doesn't engage atm you use them for you then you can relay the information.

@Mrsjayy I never hear it (or smell it) but he can he says. I think he is just really conscious of it (understandably). Thank you for your insight. Accessible toilet seems sensible to me - if he will use it.

Although currently he won't change it himself so we need to get over that barrier before he goes back to school. Currently using the ones you can empty rather than the ones where you remove the whole bag - might be better if he switches .

I had a temporary ileostomy when I was 20, and it was really very tough. It was always meant to be temporary but as a young image obsessed woman, it was a huge change and I really very struggled. But as time went on, it became second nature in dealing with it.

But the emotional / mental side was really very tough. I felt very ugly and deformed, and having accidents / leaks would completely bring me down. It’s a huge adjustment to your life.

It was some time ago but my main top was finding products that work for him. For example, I used a one piece bag for a long time, and quite often would cut the hole too small or too big , which resulted in the accidents, but once I moved on to two piece, I found it a lot easier as I would only need to cut the hole and remove the stick part once a week. But that’s a personal preference obviously .

And maybe carry spare clothes just in case of accidents. Too many times I would be out with friends, and have to head home because I had a leak.

Feel free to ask for more tips. It was 15 years ago so my memory will be vague, but I definitely remember how depressed I was when I first had the bag, and how upsetting it was in the first few months.

*main tip would be

My son only told one person but that was because he said it just didn't come up in conversation! No one has noticed and his bag isn't noisy. Might be worth asking for different bags to try out. Mine now uses a black opaque bag so it's less obvious with school trousers.

Re clothes, the more confident I became, the more comfortable I felt wearing tighter clothes - skinny jeans, fitted tops, etc. Once it started to fill up I would have a bulge, but I did get away with wearing clothes I thought I never would when I first got the bag. So it is very possible to disguise it so that no one knows.

If its trauma it's likely reversible. They're really common but most just don't realise. The paeds ward may be able to put him in touch with peers. marshmallows are fab for high output stomas to slow them down

My friend uses that Vipoo spray before she empties her bag maybe he could have some in his school bag when he goes back.

If he is worried about the noise can you (with his permission) film him doing normal things around the house so he can hear how unnoticeable it is?

My supply bag that I had with me at all times included the spray that removes the sticky stuff, and also a small bottle of a fragrant smell of some sort to hide the smell before I started doing anything. It was one of the standard supplies I got so it may be something you can get too.

It's very early days and it is pretty traumatic to suddenly have such a significant change to your body - especially as the result of a sudden event like an accident. Other people have time to mentally prepare and get used to the idea for weeks or months in advance.

We have a relationship with our body - your body is what keeps you safe, it's what enables you to exist in the world and do the things you want. When your body is changed suddenly and significantly it disrupts that and punctures how you feel about yourself, what you thought was inalienable, and how safe you feel. It's a loss and that comes with grief. One of the videos on that playlist earlier definitely focuses on the emotional side.

If he is getting through one day at a time that's a victory. In the grand scheme of things it's more important that he takes this at a pace he can cope with.

If he's not ready to go straight back to school after the holidays, do talk to the school about adjustments and support for him - maybe return more gradually or to have a corridor pass (whatever system they have for being out of lessons) or agreement with teachers that he can leave abruptly if he needs to... Don't feel under pressure to be able to just plough on.

Most of the ostomy supply companies will let you order free samples of some of their products so you should be able to get hold of a few different things for him to try out and see what he's comfortable with.

@NotAdmitting thank you - think you have just said exactly how he is feeling. We did try the two piece ones but he was still in hospital and laying down so it leaked more. Hopefully can try that again now he is up and about. I think they have less margins for error.

Maybe we should try the vipoo spray - he is currently spraying febreeze like it's going out of fashion...

@swanling hoping that school will do a reduced timetable for a bit to let him get used to it. Also hoping for a toilet pass. He's still quite weak so probably not up to a full day anyway.

That's a good idea to try some other companies - didn't realise they did free samples .
Can you choose the ones you get on prescription?

He really won’t see it now, but it does get easier. It took around a month to go from a point where I couldn’t even look at it to being able to empty and change it myself. Time is what he needs.

Have they said how long he needs it for?

I got the smelly sprays on prescription. I had a small booklet and I would call up a number and order supplies. Can’t remember if I could sample different brands though, but I could order anything from the book. This was 15 years ago though, so could be different now.

Yeah just go round the different suppliers and they will send you samples also how will you get his prescription? Delivery companies are the way to go ime

I have experience of a temporary ileostomy and it was incredibly tough at first. 2 weeks in is very early days. I was disgusted by all aspects of it for quite a while, even though i knew it would be reversed at some point. I did get more used to it though over time as I learnt to manage it. Stoma nurses are the most wonderful people and were a godsend to me. Mine was so knowledgeable. I purchased a few stretchy support bands and the specialist underwear which really helped and I almost forgot I had the pouch sometimes because of these . Vanilla Blush is an excellent company worth looking at , I’m sure they do men’s support underwear too and it’s quite “young”. Agree experimenting with different bags - styles and sizes etc is a good idea . I just requested what I wanted and it was all on prescription . The stoma nurse can help with all of that. Wishing your son all the best.

Yes and you can do that online.

Coloplast as an example of how it works:

https://www.coloplastcharter.co.uk/our-services/how-to-order/

A few links for samples, but these aren't the only ones. In case having some links to get started finding your way around helps:

https://www.pelicanhealthcare.co.uk/product/younger-ostomates/

https://www.oakmed.co.uk/about-us/ordering-samples/

https://www.coloplast.co.uk/stoma/people-with-a-stoma/

There are other options, these were just the first few to mind.

A relative of mine had an illeostomy (I've probably spelt that wrong) and as the output is more liquid and acidic they are a bit trickier to manage than a colostomy I believe.
She swore by loperimide (anti diarrhea medication) to slow the output down. 2 piece bags which were flushable. She used to sit on the toilet seat right to the back with a gap between her thighs and just pop the bag off and it would go straight down contents and all.
Black bags for discreetness and a belt for security.
At first she was super conscious about noises but even when she actually pointed out to me that it was being noisy I couldn't hear anything. I think it was the sensation coupled with the noise that made it feel noticeable to her.
The ostomy companies did some really good versions of VIPoo type sprays which she got free on prescription.

This is more for when he’s more adjusted, as it’s probably too much for him to think of right now, but other tip I just remembered is to do exercises to strengthen his rectal muscles.

When I had the stoma reversed, I had such a difficult time that I actually regretted getting it reserved. As I had an ileostomy, my large colon didn’t do any work for 8 months, and my rectal muscles also weakened. It meant I had to readjust to life without a stoma as I had runny poos with sphincter muscles that weren’t really working. Whether the issue of runny poos is something to be worried about will depend on whereabouts his stoma is, but his sphincter muscles may weaken so regular exercise should help prevent that.

Here's some male tiktok accounts which he might find easier to relate to (you might want to vet some of the videos first depending on his age!)

https://www.tiktok.com/@mr.colitiscrohns?_t=8cg4ZtTBWkV&_r=1

https://www.tiktok.com/@thebigbagman?_t=8cg4jIfDPha&_r=1

@NotAdmitting he should have it for around three months if all goes well.