School keep calling me about DS3 and I'm honestly at the end of my rope

[AutumnSlippers2025]

I don’t even know where to start really . School keep ringing me nearly every day this week to come get DS3 because of his stoma . He’s only had it since spring and I’ve shown them what to do twice myself because the nurse still hasn’t managed to get in . They keep saying they’re not “trained” so he can’t stay if there’s any issue but it’s literally just a bag change or if it leaks a bit and he’s mortified .

I’m shattered . Been on shift last two nights and barely slept and today they rang again at 11 so I had to leave halfway through midwife appointment . He was just sitting in medical room nearly crying saying he wanted to go home .

I don’t even know what I’m supposed to do . He can’t keep missing lessons but they make me feel like I’m neglecting him if I don’t drop everything and go . They said “maybe keep him home till it’s sorted” but then they’ll mark it unauthorised won’t they . I’ve asked about EHCP and they said he doesn’t need one because he’s bright but it’s not about that it’s his medical stuff .

DP’s away with work and twins are out god knows where and I’m 35 weeks pregnant and just feel like everything’s too much . Sorry this is long I’m just fed up of feeling like no one listens .

Keep hounding the nurse, everyday until this
is sorted. It is not on.
He sounds he needs to have the bag checked as it is not supposed to leak.
There is not much his school can do for him at the moment.

The fact that you have 3 children and expecting a 4th is irrelevant and is not the school’s problem.
Ring the nurse daily until this is sorted. Keep shouting until the NHS gets him the care and dignity he desperately needs.

Does your son have a community nurse? If so can she teach staff how to do it? Contact your local authority/ council about an EHCP, i’m pretty sure he can have one. My DD has a stoma and has all these in place in her Nursery.

I’m inclined to agree with you! It was my understanding that an EHCP isn’t just for SEN but also disabilities - and I’m pretty sure (as an adult with a stoma) that it falls under the definition of under the Equalities Act of a physical
impairment that has a substantial and long-term adverse effect on your ability to do normal day-to-day activities.

Even if they decide that the child’s needs aren’t severe enough to warrant and EHCP, surely the school needs a plan in place to deal with this and it can’t just be “phone mum and leave the poor kid sat crying missing lessons”

OP, is your MP any good? Sometimes the involvement of an MP can speed things up with the authorities. I wonder whether the nurse would turn up at school a bit sooner to train the staff if your MP starts asking the powers that be at the hospital why this hasn't happened yet.

I'm surprised you can't think of any mistakes they could make since you have a stoma yourself.

Not cleaning it efficiently enough, especially if they are rushing and not quite sure what to do
Not cutting the bag to the correct size because precut bags aren't recommended for children and obviously the wrong sized bag can cause some issues
Causing more leaks which could cause OP's son skin to become sore and irritated which probably isn't difficult to do as he seems prone to leaks already

etc

I was very particular about who could change my son's bag when he had a stoma because one wrong move and he'd have sore, irritated skin around his stoma site for days.

I agree - as a SENCO I would move mountains to get the support this child needs.

What medical emergency are they creating by sticking on a clean bag? It’s not like a catheter. It’s literally a bag with a hole in it. Hole goes over stoma. Bag sticks to skin. Most people get the bags precut so they don’t even need to worry about getting the dimensions of the hole right.
Some ostomates have other parts of their system like adhesive seals and barrier sprays etc but in an emergency the important part is the bag.

I can echo all of this and was going to say much the same - I’m also an adult with a stoma !

Nonsense. It would take an hour or two at most for a couple of staff members to be trained and signed off. If the nurse can't come to them, the could arrange for staff members to be trained at the hospital or indeed a local GP's. The school has no business insisting on calling OP in. This is disability discrimination.

Ah. I wasn’t aware it’s not recomended to have precut bags for children though it makes a lot of sense since they are still growing.
an easy way around for this though would be mum pre cutting that days supply of bags. And a barrier ring to bridge any gaps if the hole is slightly too wide.

It will depend on why OP's son is prone to leaking too.

With my son, he had to have a two piece system which slightly lessened leaking issues on good days so a baseplate was the norm for him as were 2 flange extenders at the top of his stoma and 2 flange extenders at the bottom of his stoma. We never in the 9 months he had a stoma managed to find a bag which didn't leak without needing the flange extenders, including 3 different stoma nurses putting different types of bags on him.

It was also vital that whoever changed him remembered to pop a crystal in his bag to thicken his output.

Some people do have incredibly tricky stomas. Lets just say that his reversal party in hospital included the stoma nurses celebrating just as much as us. 😂

I have alsorts of thoughts. Some have already been mentioned by others so I’ll likely be an echo!

is there any reason they can’t be “trained” by you?

is son able to change his bag himself at home? He’s 12 so should be at an age where he’s developing more independence. I would have him doing his own bag changes so he’s more confident when it comes to doing it at school. also as another ostomate PP has said, would be ideal if he has a little kit he can take with him to school, complete with dry wipes and a full change of clothing. And even an agreement for access to the school showers if necessary?

I’ve a stoma myself and I absolutely loath emptying or changing the bag in any toilet other than my own bathroom at home, my stoma can also often be the bane of my life so my heart really does go out to your little lad dealing with it at such a young age!

that said, something I have rarely suffered from is leaks. It’s something I ensured was sorted fairly quickly and on the rare occasions I have had a leak or near miss (could’ve been a leak if I’d not clocked it) it’s been down to

• more liquid output than usual
• Bag not stuck properly (seemed to be an issue with that batch!)
• not emptying bag soon enough
• trying to get too many days use from one bag
• bag adhesive getting loose due to hot water (shower / too splashy when washing up / jacuzzi/spa pool type thing etc)

all issues that can be avoided (usually) or at least addressed promptly.

Others have made suggestions for thickening output and your son should be allowed regular breaks to go and empty his bag AND allowed to go to the bathroom (and an appropriate bathroom - ie accessible toilets, or staff toilets - whatever it takes to not be having to stand at a sink with no privacy to clean and change his bag) whenever he needs to, not just being made to wait for specific times as seems to be the trend in secondary schools these days.

Mostly though I would be helping him develop the independence to manage it himself, ensuring the school put in place the necessary allowances for him to do this.

Oh I hear you on that - mine lives by its own rules and is entirely in charge.
i do have a question about base plate extenders though - surely they just stop the leak getting out - by the time it’s reached the extenders it’s already travelled a good couple of inches on the skin, which in the long term is just as problematic if not more?

Sounds like you have a lot in could you take leave early to give yourself a bit more rest?

Does he have a consultant? If this were my patient I'd be trying to lean on the stoma nurse for you. Otherwise, PALS, and stress that this is negatively impacting his school attendance.

Ask for a meeting

Supporting pupils with medical conditions at school - GOV.UK share.google/4yXFcGH9hmPh0UuSA

It can be. The stoma nurses generally weren't a fan of them and actually didn't advise using them at first but introduced them as a last resort because he was leaking so much. I do think they should probably only be used as a last resort if the stoma is prone to leaks or a temporary measure if a leaking issue can then be fixed. My son's issue was high output and nothing at all helped because his bowel didn't (and still doesn't) absorb very well.

We also had to change our son's daily which of course isn't the usual recommendation but I think it was because we had to rely on the extenders so much.

A PP mentioned the 15 days of not attending schools and the section 19. I just wanted to hop on and add that the 15 days doesnt need to be consecutive, they can be cumulative.

To say he can’t have an EHCP because “he’s bright” is absolute nonsense and actually an awful thing for them to say !! An EHCP is not there for children who “ aren’t bright “ it’s for children who need support due to health issues / disabilities. Without an EHCP , the school have no obligation to put things in place and he needs things in place. They are asking you to come and get him because they are right , they aren’t trained so they can’t do it. But it’s affecting his education and it’s not fair on you!! He needs support to be able to access his education and I think you really need an EHCP because if you have one , that support would be listed in section F meaning the school named on his EHCP have a legal requirement to provide it.

I have a stoma- hence name and I am a teacher.

kindly your son must be at secondary. He needs the confidence to change and once he gets the hang of it he will do it in two minutes. You get used to the sensation of leaking/ rapid bowel movement.

He needs a toilet pass and use of disabled toilet. I have a box with my supplies in it and keep changes of Clothes. He doesn’t need to be changed. I would really be encouraging him to be independent. Mine is permanent and I have had it since a child.

Oh, I meant to also say, if you’re not getting much or any support from the stoma nurse in terms of finding a suitable system that works for him, I warn you that it’s kinda selling your soul as they will harass you, but some of the suppliers - Bullen, Respond, and I think possibly Colorplast charter are all very eager to give advice and recommend products that may help (while also trying to get you to switch to their services!).
would possibly need stoma nurse’s authorisation to switch to different products depending on the process where you are, but could be worth trying some other bags and other products to help - like stoma paste, adhesive rings etc - I have an adhesive ring that’s so sticky if I’m not careful it sticks to the other side of the bag, but it’s a life saver! See what works for him.

Who in school do you think should be helping him?

Not being awkward here - genuinely curious. I cannot think of who would be available to do this at my school, and who would be comfortable doing it.

Not in secondary school. Why do they need a one to one?

I also have short bowel and rapid output. I have had ‘accidents’ at school but no pupil knows I have a bag. I don’t bother with base plates and flanges as my output can be quite acidic and I need to get it off quick.
I just don’t understand the whole thing about ‘training’ staff. Why? Surely that will draw attention to him and his needs. He needs the confidence to manage his condition. Information and education yes but that’s it. And I would be furious with the school about phoning you. Send him well prepared and with a plan. He should have a medical plan!

True, I assumed and shouldn’t have done - was assuming that they had a good system at home and no skin issues.
my bag is best done in a particular way - and I really hate when I go for a colonoscopy and the nurse INSISTS she will do my stoma bag afterwards. It’s never right, and I often have to make some adjustments afterwards BUT in an emergency, if I was otherwise going to be leaking, it would suffice.

i still really don’t think changing a stoma bag is the overly complicated process it can be made out to be though.