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 .

Love your handle! 😃

At 12 he really should be able to manage a bag change by himself our stoma nurses are very good at getting them to do it from the start. It’s not rocket science, but If id had no training I would not be happy to touch one. Not great that the nurses haven’t been in yet though.

You need to remind the LA of their legal duty to provide your son with an appropriate full time education under section 19 of the education act. If he cannot attend for medical reasons, they must still provide an appropriate education. Push for in-person tutors, as this will help speed up the process to train someone and get him back in school as it’s more costly and challenging for the LA and why should your child have to have online learning?

Also, if the school are requesting you collect your son, remind them that you require the relevant paperwork, otherwise it will be classed as an illegal exclusion. You’re currently making it too easy for school (which I completely understand,) but you need to put pressure on people so that doing the right thing and organising the training becomes the quicker/easier/cheaper option.

What policies do they have in place for intimate care and when a parent is non-contactable? I would request these too as they are overly reliant on you.

Yeah my stoma nurse wasn’t a fan either - I asked about them for swimming because when I go swimming the water and warmth causes the edges of my bag to lift … luckily my super acme adhesive barrier ring thing manages to firmly hold the whole bag in place on its own, but she basically said most doctors would be unwilling to authorise a prescription for them on the basis that if it leaks you need a different bag/system - but sounds like you exhausted all available systems for your son in the end!

There are a lot of well-meaning but naive replies from people with stomas who are able to manage theirs efficiently. For many people with stomas, even those who have had them for years and know what they are doing, changing a bag and dealing with leaks are not simple tasks. And not because of learning or motor difficulties either!

For some people it can be quite a complicated process, and a lengthy one - they are not always straightforward, even with the best stoma nurses available.

It's unreasonable to expect a child to be fully versed and totally independent especially at just 9 months post-operatively when things will still be settling down (and will continue to settle & heal for some time yet).

@AutumnSlippers2025 I know you're exhausted & overwhelmed but you've had a lot of good advice here too, I'm afraid it's just going to need a concerted effort from you for a while longer to shout in the right places.

Your lad is doing superbly, I hope his confidence isn't being knocked by the leaks, it can be tricky to find the fit/combination of products & diet to help but you will get there.

@Throwaway65131 thank you :) that’s due to the amount of bags, surgeries and resits I have had.

@Kirbert2 kindly your son had one for nine months. It’s a completely different ball game. If your stoma needs cleaning, have wipes and clean it. Mine bleeds a lot so I have a combination of wet and dry wipes.

They are at school 6ish hours. Even with a bag cut under pressure etc it’s likely to need one change tops and it can be rectified when home. It doesn’t need someone trained to change it. With powder, spray etc minor irritations remain that and are easily solved!

Im assuming school doesnt have a school nurse?

Is there schools in the area that do have a school nurse?
What's written in his individual healthcare plan?

Sorry OP, this sounds like an incredibly stressful situation for you and your son. As someone with IBD, I know how hard it is to manage a chronic condition, and worrying that you’re an inconvenience makes it even tougher. My heart goes out to your son, he must feel like he’s carrying a lot, especially if the school can’t support him and you feel frustrated having to pick him up.

With all due respect, you and your husband really need to get this resolved quickly. If you’re already stretched without the newborn, you can’t let your poor son’s needs fall through the cracks because of your decisions.

This isn’t meant as a criticism, just a gentle reminder to try not to let him feel the weight of your stress.

@MousseMousse I hardly think it’s naive if it’s lived experience. Yes sometimes they are lengthy changes (if my bag has completely blown) and it can take time to build confidence and work out your own routine but that is best for someone if this is their long term toileting option.

unless I am missing something?

That sounds awful, poor you and poor DS. What a way to put the boy off school, it sounds miserable!
I really think you need to fight and this sounds impossible when you’re about to have a baby and life gets hectic. But insist on face to face meeting with head teacher - DS educational needs are not being met and what are they doing about it? Can they set work for him outside of school? Can they change his timetable - ie is the problem mainly after lunch? Is he local could he come home at lunch time? Do they have provisions for him to help himself?
can you work with DS to really push his independence, I know this is unfair on him but if it helps in long run, are there things he can do to manage better?
the school make me angry on your behalf. I got a better response from mine about my DD migraines! He should have a health care plan at the very least

@Leftrightmiddle If tuition is provided 1-1 at home, then an adult over the age of 18 has to be present at all times. Would this be doable, OP?

It's naive to presume it's that simple for everyone. One person's lived experience is just that, one person's. In reality people with stomas can experience a range of difficulties that can take a long time to master, if that's even possible.

One shouldn't underestimate that a boy as young as the op's has also had a huge amount to deal with and adapt to. It sounds as if he's done wonderfully and taken much of it in his stride, but suggestions that he needs to, for want of a better summation, buck up and learn to deal with leaks lack empathy and understanding of the toll this may have taken on him. Its still early days for him, he's very young and his anxiety is completely understandable.

My son had his reversed as soon as it was safe to do so because his output was so high, it was the only way he was going to be discharged from hospital any time soon. He is still bowel incontinent and he still needs TPN, just not all of the time like he used to when he had his stoma.

He was 8 at the time and I imagine would've needed support if he had to have a permanent stoma for a long time because of how complicated his changes could be to the point that even the stoma nurses struggled and that is why it was hopeful that a reversal would be successful for him.

Genuinely asking - wouldn't the level of need fall well under the notional £6k (in terms of hours of support needed daily) therefore rendering any EHCP non-statutory?

Poor lad. I have IBD, not a stoma, and that's bad enough to manage with accidents/near misses etc. He needs support and fast. Your newborn is only going to add to this stress in the nicest possible way , do you have a family support network to help you with all your children? 12 is still so young, he needs support and he might be feeling like you're not there for him because you're more bothered about the baby (not saying you are, just saying how he might be feeling, not wanting to burden you further) This is where your village need to step up and assist.

Yes, it would unless school can’t meet need without additional funding.

I never said it was ‘simple’ for everyone. In your first post you said stomas (with physical or educational challenges) should be straightforward. Now it’s someone can take a long time to master them, if even possible? Why not possible?

I agree that OP’s son is doing wonderfully but I do also think if this is a long term condition it be better if he tells his trusted member of staff to walk through it with him, maybe with the senco, then although time and patience to get this right. By himself. Leaks do take a toll. Whether ten or 45. I have anxiety when I got to work sometimes and I Leak six times. The tools he needs are with the what if’s. - dealing with those bad days. Have a plan in place.

It’s about his life moving forward.

Contact your local SEN team, they can advise on what might be available. You can apply for an EHCP yourself even if the school say he doesn't need - you have the legal right, your SEN team will contact the school for more info, but will have to give the request consideration. Even if it doesn't end up getting to EHCP, there is also an option of high needs top up funding - they can talk you through that.

And no harm in getting his stoma checked as well just in case there is a problem with it.

I agree that he needs an EHCP on medical grounds, although tjats going to take an age to get sorted out. But also proper training is.probably needed for the staff to be insured. Maybe there is an Independent provider of stoma care training that the school could buy in to?

Right, so what are people hoping an EHCP will mean? It won't bring extra funding and won't be legally binding. I can't see how it would change anything.

For clarity, schools are expected to fund the first £6k of support for children with SEN and/or disabilities. To reach that figure, you are saying the child needs 1:1 support for much of the school day.

Agree with others the school needs to be doing more to get training in place and a medical plan.

Right, so what are people hoping an EHCP will mean? It won't bring extra funding and won't be legally binding.

@pIum thats exactly what and EHCP is - it brings funding if deemed necessary and it is a legally binding document.

Why else do you think that LAs are so stingy in giving them out?

. It leaks maybe once or twice a week sometimes more if he’s had a bad tummy or been running around too much . At home he does everything himself now bless him I just make sure the skin’s clean and help if he needs new base or wipes or whatever , mostly he just wants me nearby because he gets worried it’s going to hurt or smell .

I was honestly thinking of taking him out for a bit but I don’t know how that would even work with baby due soon . I can’t imagine trying to homeschool when I’m up all night feeding . But he’s miserable at school right now he says he feels sick every morning and I know it’s anxiety but he won’t admit it . He’s off a lot anyway when he’s not well , he catches every bug going and when he has a flare up he’s wiped out for weeks so he’s already behind and then when he actually feels ok to go in they still send him home over tiny things and it just sets us back again .

He takes spare clothes and bags every day but when I get there he’s already so anxious and upset he just wants to go home straight away . I try to tell him it’s fine and we can sort it there but he gets pale and shaky and starts crying saying everyone will know . It’s horrible because I know he needs the routine but it’s like school have given up trying .

I’ve emailed the nurse again this morning and copied the school in so hopefully that pushes something along . I just wish someone would listen before he ends up too scared to go back at all .

@AutumnSlippers2025i spoke to my dp this morning about your post as he is a head of an send school. He said the issue would be your son would need two members of staff trained for safeguarding reasons and changing would then need to be in a disabled toilet or medical room because of space/ safeguarding for both staff and child.

I am sorry if it seemed I was lacking in empathy. Ehcp’s are not a quick solution. He should have a care plan. And I do think educating staff is important- educating them so he can be independent especially if this is a long term solution.

I really wish him all the best. I remember how difficult those first few months were to begin with. He will get there though :)

I do completely understand that this is really hard for you, but you should not be bearing all this struggle on your own. Hopefully the training will be sorted ASAP, but your dh may need to take parental leave or a holiday to support you in the meantime. As you are heavily pregnant you need to keep an eye on your own health too.

@AutumnSlippers2025 I posted before your update and that does sound awful for him. I leak daily and it does make you anxious- do I smell? Can kids smell me? My bag also makes random noises and that can be hard to disguise in a room full of children.

I wonder if he needs a package? As in counselling? The ability to come out of class? A trusted adult/ support worker he can find so he feel less anxious. I completely agree though that it can be angst inducing as an adult let alone as a child.

I suppose you don’t want him leaving school or not going as a default. Has he been seen by st marks? I don’t know where you are in the uk but they are the ‘elite’ can sort any issue bowel hospital. I have contact details If you want them. I have a difficult stoma and they helped.