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 .

I know i saw a guy on tiktok that has a stoma and he seems great with his and produces videos to educate and support people. I found the one I watched brilliant maybe you could have a look at some with your son. I think he is called Mr.colitiscrohns. Is there a support group he could look at too? I'm sorry I can't help with any of the school things but building his confidence about having the stoma and seeing others with one may help.

Maybe check the content first yourself though.

I'd take him out of school until it was sorted, life is way to short to be unhappy at such a young age. And you dont need that added stress at the moment.

On-line learning and lots of meet up with friends so he doesnt lose contact.

I am a teacher, and also have a daughter with a tricky stoma, so completely understand both sides of this.
The teachers absolutely cannot do anything to help without proper training, so unfortunately they will be obliged to continue to ring you until they have had that training.
I would probably be asking for a meeting with the Head and the Senco to discuss the situation, because this must be an extremely distressing situation for your son. A leaking bag can be very messy and difficult and upsetting to deal with as an adult, never mind as a child.I would also be making a total nuisance of myself with the stoma nurses until they sort out the training.
Someone mentioned flanges- the banana shaped stickers - they are very good for holding a bag on firmly.
Please do also explain to your partner that you are at the end of your tether and need more support. I really hope things will improve for you and your son soon.

Thanks again everyone there’s so much good advice here I really appreciate it . He does have pre cut bags yes we do that together on a Sunday and I’ve made him a little kit with wipes and spray and spare boxers and all that , he takes it every day but half the time it just stays in his bag because he won’t go deal with it on his own . We’ve practised at home a few times like pretend it’s leaked at school and he manages fine but he says it’s different there because there’s no one he knows and he feels trapped .

I did ask if he could keep his phone on him just for that reason but they said no phones at all unless he’s diabetic or has a medical exemption and they don’t class this as one which is ridiculous really because if he could just ring me I could calm him down and talk him through it then maybe I wouldn’t have to keep running up .

He does have an IHP they did one when he came back after surgery but it’s very basic it just says he can use disabled toilet and call for first aid if needed which is what they keep doing . It’s private enough but not great because staff and kids go in there for other stuff and he gets embarrassed if anyone’s waiting outside . They said he can’t keep things there either so he has to carry everything around with him which just draws attention .

DS4 is at the same school but only just started and he’s still finding his way so I don’t want to put that on him , he’s quite sensitive as well .

I keep going back and forth about taking him out for a bit till the nurse sorts the training but I’m scared if I do he’ll never want to go back and he’s already missed loads . It’s just horrible seeing him so anxious every morning and I feel like I’m letting him down whatever I do .

Have a look at Health Conditions in Schools Alliance. You’d be surprised the amount of difference the help you can get from charities can make, sometimes even just arming you with yours and your son’s rights can make all the difference but some will step in too. I’d recommend contacting the charity ‘Contact’. They have a helpline and may have advice. The charity ERIC also have a helpline and I’ve found them helpful in the past. Maybe also email them the “Guide to Stoma Care for Teachers in Secondary School” published by Oxford University Hospitals. Sorry this is happening for you and your son 😔

Just to say- My son had EOTAS tuition in a local cafe as I couldn’t supervise due to cancer treatment. He didn’t have an EHCP at the time.

Woah, that is shit of the school. Take him out and get a meeting with the head. He needs somewhere private to deal with the stoma and change clothes and he needs to be able to keep things there. I can't image him having to carry round soiled clothes all day, thats totally unreasonable.
Disability discrimination rules means they can't penalise him for not being in school due to his condition. I know it hard and you are exhausted, but you have to fight for him. He has a long road ahead and he needs to feel comfortable at school.

Request a meeting with the school. They need to be doing more. No, they can’t physically help without training, but whilst that is being arranged, they can be more supportive than they currently are and provide more adjustments than they currently are. Follow up your meeting with an email. If you don’t get anywhere, complain. You need the IHP/IHCP reviewing urgently too.

Section 19 provision doesn’t require an EHCP.

if they apply then it can’t be (no idea why).

@Livingthedream1978 your SENCO is mistaken. Parents can appeal refusals whether they or the school submit the initial EHCNA request. Schools can’t appeal to SENDIST, but parents can appeal even if it is the school who originally submit the request.

He sounds traumatised by this new normal for him. And making him continue going to school could increase his anxiety to levels where it may be harder to scale it back. Did he have some time to adjust and gain confidence around the stoma before going back to school? If I was you I would take him out of school from now to Christmas and take the pressure off him and let him grow his confidence and settle the fear. In the meantime try to find a community for him of kids going through the same thing. Check Facebook for parent groups of kids with stomas and see if he can meet some friends going through the same thing so he doesn’t feel alone with this. Get onto pals, make complaints with your stoma nurse, contact your local politician if needed. Do everything you can here to protect your son and help him gain confidence around his condition. 12 is such a sensitive age and you really need to get ahead of this and help him out before the real teen years kick in. If you can help him gain confidence and settle his anxiety then he will be in a much better place.

I had a stoma. Getting him more confident with managing it will ultimately be the solution, but the poor little lad. I do have two ideas about the leaks. Timing - if the leaks are now worse than before and he’s only had it 6 months or so, I’m guessing his stoma might have settled and changed size slightly. Maybe experiment with cutting the bags slightly smaller. The sticky white rings really helped me. Also, is he emptying his bag at school or putting it off and letting it get too full, which is resulting in leaks, possibly? I’d suggest to him a mandatory empty of the bag at morning break and again at lunch, whether he thinks it’s needed or not, so his bag stays light and it’s then less likely to leak. Bless him. My heart goes out to him.

@AutumnSlippers2025 have a look at Confiplus bags. I know someone who uses them and they say they're really good regarding leakage.

If you are pre cutting the bags, I'd make sure that you are keeping up with checking the size because it can change regularly, especially when the surgery wasn't all that long ago and especially when it comes to children.

I'm so sorry, this sounds incredibly tough for you and your DS. From the school's pov, if it's a standard school they'll need several trained staff members, it needs to be written into their contracts to provide personal care (staff may not be comfortable doing this for their own reasons) and they need somewhere to do this which is designed to handle bio-waste (with a sluice, facilities that can be cleaned appropriately etc.). Our school has a school nurse (actual registered nurse, not a first aider) and even then we aren't able to do this sort of thing easily because she needs to be available at all times to cater to over a thousand students (a lot with medical needs). Realistically it's a lot for schools to navigate with the very poor funding/facilities most have. If you're able to secure an EHCP or similar it may help as there would be funding provisions. Keep pushing the NHS for training - there's not much you can do until that's been secured.

Also, push for him to have his phone. Ask for a meeting with the head of year etc. and explain that you can't keep attending school, and that you absolutely don't want to keep your son home as he may struggle to get back in. They should want to avoid that at all costs. He can sign a code of conduct contract etc. for it, if needed and do it on a trial basis?

OP, just to say schools do have a duty to support children with medical needs under the Children and Families Act and that includes stoma care, even if it’s not mentioned specifically. The DfE guidance (“Supporting Pupils with Medical Conditions”) says every school should have a proper policy and an individual healthcare plan (IHP) for any child who needs medical or personal care.

You could ask the school to put a plan in place for your son, setting out things like where he can go if there’s a leak, who’s trained to help, and how they’ll make sure his dignity and independence are protected. You could even offer to show staff what’s involved as nurse not yet been available.

However, as staff still haven’t been trained and this has been since spring, I’d raise it in writing with the headteacher as they have a legal duty to make sure proper arrangements and training are in place. If nothing happens, you can escalate it to the chair of governors (or academy trust), and if you’re still not getting anywhere, the Local Authority.

Schools aren’t allowed to exclude or refuse to support a child because of stoma or continence needs, there’s really clear guidance around this. Bladder & Bowel UK and ERIC have a good resource called Managing Continence Problems in Schools if you want something to show them.

I'm so sorry you're having to fight this battle, you really shouldn't have to. Have you tried speaking to your local IPSEA for help with this?

Trained or not, school are absolutely not supporting his needs and they have a legal requirement to do so. Not providing a private and accessible place to change anytime, as well as making him keep all of his stoma supplies and equipment and soiled clothes on him at all times is absolutely disgusting and discriminatory. No wonder the poor boy is anxious. He is being completely unsupported at school. He should also be allowed to have his phone on him at all times as a medical exemption. If you get nowhere with the head then I would be escalating this to the governors or even the LA as how school have supported him so far is abysmal and completely unacceptable.

I do understand why staff can't help if they haven't been trained.

Can you get your partner/dh to do some of the chasing and meetings with the school? It sounds like you desperately need support and he needs to do his part to help keep you and your coming baby safe and well.

School need properly training by a nurse just incase of any problems. They obviously don't feel comfortable with doing it without the official training. Ive changed stomas in a job but that's different in a school. Ive also been trained to peg feed by a nurse. It's hard on you but also for the school.

So one minute he has a medical condition which they are not allowed to touch and the next he doesnt have a medical condition so is not allowed his phone
Gaslighting fuckers.

I’m surprised the teachers are willing to actually help. It’s not really their job to do “personal” care.

At 11, he should be able to do something like this. Have you shown him/ practiced at home on what to do if x,y or z happens? Build his confidence up. I’d also be going to the Gp asking for an urgent referral for support as your son shouldn’t be expected to miss school.

Do not keep him home over this. That isn’t fair .

Edit: I’ve just seen your other comment. I know you’ve said no bones, but what about a cheap pay as you go that he can keep in his “kit”. It’s only to be used to call you to talk him over things.

@AutumnSlippers2025 I'd certainly demand to know why they don't think a child's intestine being brought outside of their body doesn't count as medical exemption

Bloody furious on your behalf for that one

Because T1 is classed as a disability. Blood sugar spikes and drops can cause cognitive difficulties (as anyone who drives will know by the restrictions driving following a hypo).

It sounds really tough OP. Your child’s hospital team need to get their act together and train the school staff properly. They can then do a proper HCP that you agree to. Stressful that it needs to be in place before your baby arrives.

We have children with EHCPs but some also need provision that falls under medical. We either access additional funding for staff or nurses provide it.
Blended feeding funding for example has been withdrawn from December 2025 and we can no longer provide it to new starters.

I would check who is responsible for the support and if it falls under school or medical responsibility first.