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 .

Absolutely apply for an ECHP… whether he is bright or not isn’t the issue - the issue is that school can not support him to learn because of his medical condition. School don’t have to apply for this - you can…. Keep a diary of EVERY call/email etc and keep this as evidence.

You need to call the nurse and tell her that training needs to be organised asap, this is unsatisfactory and the staff in school NEED to trained…. There should also be a detailed care plan and risk assessment completed jointly by you and the nurse… the care plan will describe what they do if it leaks etc…. And if it says that staff are responsible then they need to be responsible….

Your child has a disability, if school are treating him differently or denying him his education then they are discriminating against him and therefore breaking the law.

google The disability discrimination act 2010. Also look at your child’s schools website.. they will have a policy about inclusion etc.

if this continues you write a formal complaint quoting disability discrimination laws, their own policies, that ALL children are legally entitled to an education etc

OP says he's 3

In your position I would either fight the phone rule, or buy him a second cheap phone which is kept in his stoma kit and only used for calling you from the disabled toilet.

If he’s not allowed to store his things anywhere, can you ask him if part of the anxiety is coming from what happens afterwards (ie someone knowing that he is carrying soiled clothes round school?) If so, I would allow him to treat the soiled clothes as disposable and bin them and see if that helps. Buy some spare second hand uniform off Vinted, so that you’ve got a good stock.

I also think that you need some better stoma care. His bag definitely shouldn’t be leaking weekly (mine has leaked once in the last 3 months, my own fault for using a new moisturiser) and you shouldn’t be waiting this long for school staff training. Very short term, if it’s leaking after he’s run around and got sweaty, can you work out a way to keep him out of PE?

Final question, are you 100 percent certain that it’s the stoma which is the problem and not the anxiety? Ie he’s not claiming it’s leaked as a way to get home because he’s feeling anxious?

I think she means he's her third child :) she also has twins and a baby on the way
From what I gather, he's about 11

I’m a class TA, not a 1:1. I’ve had a couple of diabetic children in my class over the years. Myself and a couple of other staff were trained to care for them and follow the care plan. There were no additional staff employed to do this.

It’s a long and arduous process though and this lady needs help now.
It really lies with the stoma team to sort out why the leaks are happening so frequently and train school staff. I’m a TA and would not feel comfortable dealing with this without training.

Same in dd's school, staff are just expected to manage. It's ridiculous.

Yes it is long but the child may still have a stoma in place when they move school and having a ECHP will make it easier.

@AutumnSlippers2025 I haven’t read all the replies, but could he be getting anxious because he’s having to do this in the communal toilets? If so, is there an option for him to go to a more private toilet? I could imagine I’d feel anxious if I was in a communal toilet and kept hearing someone come in. I hope things start getting better soon

Hey,
mum of a 12 year old son with a stoma here.

when was the last time he had his stoma checked by a professional?
my sons stoma retracted twice, and he had to have it done twice more. The stoma was too flat, so they explained it as like a tea pot with no spout. The poo would just sort of puddle at the top and obviously cause the bag to unstick and leak. At one point his stoma bags wouldn’t last more than a few hours.

it sounds like your sons isn’t quite as bad, as is only leaking a couple of times a week. But I really think a stoma nurse should be working with you to explore ways to ultimately get the leaking down to zero. Over the half term holidays would have been a great time to explore. Things we have tried in the past are the little donut type sticky pads that you put onto the stoma to try and push it out more to give it more of a ‘spout’.

if you got into a routine of changing his stomach bag daily, in the morning, would it last the day? Also, if he is paranoid about the smell, could you perhaps add some of that ‘vip poo’ into his little bag, so he can empty it into the toliet and the smell gets trapped into the toliet water. Google it if you haven’t heard of it. We have used it in the past and it does really help.

it’s really tough for them at this age, but sounds like it’s been really tough for you too. Sending big mum hugs.

I feel for you 😞. My partner has had a stoma for over 10 years (bowel cancer) and the nurses were next to useless. I ended up finding different bags when they used to do coffee mornings. The hospital ones they gave him were called Dansac (think that's how you spell it) and they kept exploding or blowing up.
The new ones he has are called coloplast. The site is called colostomyuk.org. there's a list of suppliers.
My partner has a two piece. So the baseplate stays on and he changes it every other day. And just takes the bags of cleans it and puts a fresh one back on. There are many different types. Have a look.

I'm also a healthy care assistant so I deal with them regularly. A bit annoyed actually that the school has checked out on this. What happened to inclusion.

When you do get training make sure multiple staff members are trained. Ds is tube fed and 5 members of staff did the training so someone is always available when needed

To be fair it doesn’t sound like the school have checked out but are in that tough position between the operation being done and them actually being provided with training on how to support.

when ds started secondary school he had been tube fed for 2 years but it still took 8 weeks into term for the nurses to be able to come in to provide the training, until then I had to go in daily.

Yours incompletely understand. A feeding tube is a lot more complexed. If that got that wrong there could be major issues. Supporting with a bag change is completely different. Even if they were just there for encouragement. He can do it himself he just becomes overwhelmed.

To be honest I fail to see why the school staff can’t accept teaching from you. A stoma is very different to someone with diabetes on insulin which can be life threatening if not treated correctly. They’re not having to administer any medications it’s just a different form of personal care. You are obviously managing it yourself at home and have been trained by the stoma nurse so will be an expert yourself by now. Can you explain this to the school and see if they will accept the training from you instead. Also have you spoken to the stoma nurse yourself and explained the difficulties your son is having because of the delay. If she’s aware hopefully she will try and speed the visit up for you or could she perhaps provide the training remotely i.e. via Teams?
I hope you get things sorted soon, it’s a horrible situation for you and your son to be in

They can't legally do so, the nursing team will have to officially sign them off before they are allowed to.

He has an IHP so thats a good start. Ask for an emergency review and let PALS know you expect the stoma nurse to attend. Ask school to invite the LA schools nurse and the IHP team.
State what he needs to actually meet his need and ask LA who will do that. For Kids on IHP there is a team working for the LA who write the plan and arrange training for school staff.
Pur your request for an emergency review in writing to the school and copy the LA into the email.
My dd has an IHP for a peg and its really a very detailed care plan.
Hth.

@BizzyLizzyandLittleMo because OP’s son attends a main stream secondary school. He probably moves from class to class and may or may not have a TA in some lessons. Support staff may be thin on the ground. They may or may not be a nurse (i suspect not if he is going home) Staff have to be trained (legally because of safeguarding and there would have to be two staff there in a toilet situation) Staff have to agree to it if it’s personal care. It’s not straightforward sadly.

Get in touch with his Stoma Nurse asking them to prioritise a meeting with the School to train the staff so you're not expected to go in every time there's an issue. Arrange a meeting with the Head & offer to go in once more to show the staff what to do. Explain that your Son is more than capable of sorting things himself but needs an adult to supervise for a bit of a confidence boost. Make sure your Son has everything he needs with him at school so if he has a leak he can sort it & get changed if necessary. Provide zip lock bags for him to put soiled clothes in & a separate drawstring bag to put everything in so he's not using his regular school bag. Put in extra wipes & maybe a little bottle of aftershave if he's fearful of odours. Encourage him to do things at home as much as possible so everything becomes second nature to him & to speak up to Teachers if he needs any help whilst at school or if he needs to leave class.

Can you contact your consultant who did the surgery to hurry up the stoma care team? It seems a cop out that they need training blah blah, its too long to be bleating that story.

I would also if you can contact the ileostomy association/crohns and colitis association, they may be able to advocate for you. Where in the country are you. I am in Scotland and would help with training if you were nearby, I am sure most ostomists would.

I am so sorry that you and your family are going through this. I would also be pushing the angle with the school that this is disability discrimination, there is no reason you cannot teach them what to do, rather than a nurse. Honestly the ass covering brigade are seriously dissadvantaging your son and its just not on...

As a suggestion:

1. PALS regarding the lack of school training.
2. SENCO meeting to be an appropriate plan in place. That plan needs to work, because their current one doesn’t. That might be phone with him to enable support. Access to first aid room for sorting issues rather than disabled loo.
3. Find out details for the attendance officer, and enlist their assistance.
4. Talk to the stoma supplies company. They tend to pride themselves on preventing leaks and have specialist nurse advisors available on the phone. May be more use than the local nurse who quite frankly sounds like woefully underperforming.
5. Find some of the stoma using influencers on social media to help with confidence.

@AutumnSlippers2025 any improvements? Did you hear from team?