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Original poster

Talk to me about stoma's (specifically Childrens )

81 replies

princesssugarless · 27/05/2023 19:47

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?

OP posts:
Sirzy · 27/05/2023 19:51

I know nothing about stomas but it may be worth looking for groups on Facebook if you are on there as they tend to have more specific groups.

also ask the hospital about play specialist or anyone else who can help him come to terms with things

Mrsjayy · 27/05/2023 19:52

Hi can I suggest you look up "2bags for life" its run by a lovely woman with two ostomies. on Facebook, its a supportive and informative community of ostomates. I have 1 but for urine so different plumbing obviously. I think its difficult at first he is adjusting and recovering .

Mrsjayy · 27/05/2023 19:54

It might help him to tell trusted friends so he/that can adjust to his new normal.

Mrsjayy · 27/05/2023 19:57

Also he could search tiktok lots of young people on there with ostomies.

Sirzy · 27/05/2023 19:57

When my son had his feeding tube fitted while he was off school told the children in his class (with our permission) and explained it and made it clear what it was for and that he would talk about it if he wanted. Gave a chance for questions without him feeling under pressure if that makes sense. May be worth considering something similar

mauvish · 27/05/2023 19:59

There should be a stoma nurse at the hospital where your DS was treated. Give him/her a ring, they will know all the tricks of the trade to minimise many of these potential problems.

swanling · 27/05/2023 20:02

There are probably lots of vloggers talking about ostomies, but one who comes to mind reading your post is called Maggie (@LetsTalkIBD):

https://youtube.com/playlist?list=PLh6tjJZZxZ2RVWOhnOVN0Sk97MVze1SdP

That should link to her ostomy playlist which has videos about adjusting to a new ostomy and practical tips (eg what to carry in an emergency ostomy bag and how to cope with those scenarios). Maybe you could have a look and see if there are any that he might find helpful?

She has an ileostomy and Crohn's disease so some of it won't be relevant to him, but she has good videos on general ostomy issues.

swanling · 27/05/2023 20:04

The videos might help you even if they're not your son's thing. (I appreciate a male perspective might be more what he would want.)

Nemesia · 27/05/2023 20:07

What is he struggling most with? My teenager has one, feel free to ask anything!

Warmhandscoldheart · 27/05/2023 20:07

mauvish · 27/05/2023 19:59

There should be a stoma nurse at the hospital where your DS was treated. Give him/her a ring, they will know all the tricks of the trade to minimise many of these potential problems.

I agree the stoma nurses are very knowledgeable. Coloplast offer great support and advice, they supply my DM's colostomy bags. They do offer samples so you can find the right one for your DS.

Nemesia · 27/05/2023 20:13

Mine struggled with the bag sticking properly so now he takes a mug of hot water and wraps the bag around it to increase the stickiness.
To begin with he would only change the bag every couple of days, now he removes the bag daily, has a shower to clean the area then puts a new bag on.

Original poster
princesssugarless · 27/05/2023 21:25

Sirzy · 27/05/2023 19:51

I know nothing about stomas but it may be worth looking for groups on Facebook if you are on there as they tend to have more specific groups.

also ask the hospital about play specialist or anyone else who can help him come to terms with things

Thanks, I'm not but might be worth a look - MN is my go to ....

OP posts:
Original poster
princesssugarless · 27/05/2023 21:26

Mrsjayy · 27/05/2023 19:52

Hi can I suggest you look up "2bags for life" its run by a lovely woman with two ostomies. on Facebook, its a supportive and informative community of ostomates. I have 1 but for urine so different plumbing obviously. I think its difficult at first he is adjusting and recovering .

Looks like Facebook is the place to go. Yes he is adjusting at the moment - it's a lot for him to deal with. Thanks for suggesting that - I will look into it

OP posts:
Original poster
princesssugarless · 27/05/2023 21:27

Mrsjayy · 27/05/2023 19:54

It might help him to tell trusted friends so he/that can adjust to his new normal.

I thought this but currently he is adamant he doesn't want anyone to know. I guess this might change as be becomes more comfortable with it himself?

OP posts:
Original poster
princesssugarless · 27/05/2023 21:28

Sirzy · 27/05/2023 19:57

When my son had his feeding tube fitted while he was off school told the children in his class (with our permission) and explained it and made it clear what it was for and that he would talk about it if he wanted. Gave a chance for questions without him feeling under pressure if that makes sense. May be worth considering something similar

We are seeing the school next week so this might be something to consider. Currently he is adamant no one should know. Thank you

OP posts:
Original poster
princesssugarless · 27/05/2023 21:29

mauvish · 27/05/2023 19:59

There should be a stoma nurse at the hospital where your DS was treated. Give him/her a ring, they will know all the tricks of the trade to minimise many of these potential problems.

She is doing a home visit next week - when she saw us in the hospital he wasn't really in the mood to discuss. Fingers crossed he might be more aware next time we see her. She kept asking us if we had questions but I think we were all abit shell shocked ....

OP posts:
Original poster
princesssugarless · 27/05/2023 21:30

swanling · 27/05/2023 20:02

There are probably lots of vloggers talking about ostomies, but one who comes to mind reading your post is called Maggie (@LetsTalkIBD):

https://youtube.com/playlist?list=PLh6tjJZZxZ2RVWOhnOVN0Sk97MVze1SdP

That should link to her ostomy playlist which has videos about adjusting to a new ostomy and practical tips (eg what to carry in an emergency ostomy bag and how to cope with those scenarios). Maybe you could have a look and see if there are any that he might find helpful?

She has an ileostomy and Crohn's disease so some of it won't be relevant to him, but she has good videos on general ostomy issues.

Fab - thank you, I'll look this up.

OP posts:
shivawn · 27/05/2023 21:30

Oh I can just imagine how difficult this could be for a teenager. I've had middle aged patients who have really struggled with needing a stoma, to the point of being unable to look at it or do any of their own self care. I think they're more common than people realise. At least he knows it's only temporary and won't be there forever.

Sirzy · 27/05/2023 21:31

princesssugarless · 27/05/2023 21:28

We are seeing the school next week so this might be something to consider. Currently he is adamant no one should know. Thank you

Show quote history

I can see his thinking (as I’m sure you can) and my experience with feeding tubes is going to be very different from what you’re both living through given the natural stigmas.

hope you can both find the right support as it does make such a difference

Original poster
princesssugarless · 27/05/2023 21:32

Nemesia · 27/05/2023 20:07

What is he struggling most with? My teenager has one, feel free to ask anything!

Thank you! He is mostly worried currently about muffling the noise at school and making sure it is kept hidden. I have bought him a belt type thing but he hasn't really used it yet .

OP posts:
Sirzy · 27/05/2023 21:32

I wonder if the stoma nurse can put him in touch with anyone of a similar age who is further into it as a bit of peer support?

Original poster
princesssugarless · 27/05/2023 21:35

Sirzy · 27/05/2023 21:32

I wonder if the stoma nurse can put him in touch with anyone of a similar age who is further into it as a bit of peer support?

Yes, thats a good idea actually - in his more emotional moments he just keeps saying his life is ruined.... he does err on the overdramatic sometimes anyway. He focuses on what he can't do - I have said there isn't anything he can't do really once he's healed up. I suppose from his point of view it's easy for me to say that.

OP posts:
Mrsjayy · 27/05/2023 21:36

princesssugarless · 27/05/2023 21:27

I thought this but currently he is adamant he doesn't want anyone to know. I guess this might change as be becomes more comfortable with it himself?

Show quote history

He just needs to do what makes him comfy and if he doesn't want to then that's fine his condition Is his to be private with. I would suggest he uses the accessible toilet if he can this will give him confidence if he needs to change his pouch. You can also get ostomy underwear that might help him. Fwiw I don't think it rustles as much as ",we" hear.

Original poster
princesssugarless · 27/05/2023 21:37

shivawn · 27/05/2023 21:30

Oh I can just imagine how difficult this could be for a teenager. I've had middle aged patients who have really struggled with needing a stoma, to the point of being unable to look at it or do any of their own self care. I think they're more common than people realise. At least he knows it's only temporary and won't be there forever.

The consultant at the hospital said that around 3 people at his school would be likely to have one (based on averages ...) and you wouldn't know unless someone told you. Although it's a relief it is only temporary, I'm not sure if that is making it more difficult for him to accept.

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