Stoma School

We NEED to talk about ablism.

Hi, I'm Sasha. I'm 31, and I'm back on Stoma School - properly this time. And I'm also sick to death of ablism.

On Saturday, I went into Leeds to do some jobs and shopping, and I went to use the Access Toilet in the train station on the way home. Typical isn't it - one of the times I actually need to use said toilet and I had forgotten my radar key. Oops!

I went to the information point, explained and they were so, SO lovely. They told me to make my way to where the access toilet is and someone would meet me there with the key.

This is where things went south...

On this particular Saturday, the men's toilets in the station were closed due to flooding and so, when I asked the lady stood there with the radar key if I could please be let in to the Access Toilet this - word for word - was her reply:
"Do you have to? Can you not use the main ones?"
"No, I need to use the Access Toilet. I have a stoma."
"Well I'm letting the men use it at the minute because theirs is closed so don't be long."
"It's my stoma, it'll take as long as it takes."

I genuinely don't even know where to start...
- Letting an entire section of people use the Access Toilet when there are at least three other areas throughout the very large train station that are dedicated men's toilets
- Asking if I "had to" use the Access Toilet. Let's be honest, none of us are using them to throw a disco party, are we?
- "Don't be long." ... don't even think I need to elaborate on what's wrong with that.

And this is WHY we need to talk about ablism. At that moment in time, my stoma bag was in an 'empty now or empty now' situation. So the fact some lady felt the need to try and either delay it or hurry it? I'd say what I thought of her but I promised my Mum I'd swear less.

That is all

Sasha x

Good evening all! Sorry I've been quiet the past few days, I have been exhausted going back to work properly post-op (definitely ready for the week off I have coming up)!

Tonight's question for you all: At the moment, I'm focusing on a Stoma Passport for us to use when we are in a healthcare setting.
Is there anywhere else/any other settings you can think of that would benefit from one?
I'd love to see if we can extend this idea!

Let me know in the comments and, as always, PLEASE share!

Meet The Mascot!

A bit of an unusual post for today, but trust me - there is a point!

This little guy is Reginald. He's three. And he is the first thing I bought myself/treat myself to after my initial stoma surgery just over three years ago.

And if these pictures don't make it obvious - he goes everywhere with me. And I mean EVERYWHERE. He has been to work, to days out, to Chester Zoo & The Deep in Hull. He's been on to Croatia, Scotland, and even on a Cruise (but always in my hand luggage because I'm too worried about losing him).

But, more importantly, I use him as my little friend whenever I'm ill. He comes to GP appointments, blood tests, walk-in centre visits, and I even take him into the CT Scanner with me and hold his hand (admittedly they still make me slightly anxious). He's been to A&E every single time I've been since I got him, and he stays with me in hospital and gets squished and cuddled endlessly.

He's my little buddy. My hand to hold when it's not visiting time, or when my bag leaks. Or when I wake up on the ward in the middle of the night and can't back to sleep. (Although I think his favourite part of being in hospital is all the compliments he gets, and all the snacks he sneaks off to find when I'm sleeping).

And so, I have decided that Stoma School is going to have a mascot. (Yes I am thirty years old, yes my teddy goes everywhere with me, no I do not care).

So say Hi everyone! & I'd love to know if you guys have any comforts for when you end up in hospital? Let us know in the comments :)

(And yes, he has his own set of pyjamas. What can I say? The guy likes to be cosy!)

I have spoken to a current staff nurse (based in Scotland) who has admitted that Ostomates having a Stoma Passport would be beneficial, especially when it comes down to our routine(s) etc.
Would you guys be up for it if I created one you could download and fill out with your info?

Today's Thought...

Stoma Passports!

Okay so these are something that I've not really heard of, but have come up in comments and such the past few days, so have a read of the questions and answer whichever one applies to you:
1. If you have a stoma passport, what information is on it? And do you find it useful in a healthcare setting?
2. If you don't have one, would you be open to one being created in some format? And what would you want on it?
3. If you're here as someone who doesn't have a stoma, what do you think the benefits of someone with a stoma having a stoma passport could be from an outsiders point of view?

Let me know in the comments and as always - PLEASE share & spread the word
Xx

Send a message to learn more

I've seen a lot of people in the Ileostomy Group say that "some staff just don't know/don't care". That's what I want to change. That mindset, from the staff, is not okay. I am more than willing to talk staff through it if they ask for help. I have, on multiple occasions, asked for help emptying my bag (due to extreme nausea), and the staff member has said "I'm not sure how to do this, may you talk me through it?". OF. COURSE. I will ALWAYS do that. But just shrugging your shoulders and saying you don't know and don't care? Not okay.

We. Deserve. Better.

What's your biggest hospital frustration about your stoma?
OR (if you don't have one)
What's your biggest frustration about your loved one with a stoma being in hospital?

HI EVERYONE 👋

The first thing I want to do is get some information, so I have a few questions and I would love it if you guys could answer them!

1. Are you yourself an ostomate? And if not, are you a family member of someone with one? A friend? Or are you just curious to learn more about stomas?
2. FOR OSTOMATES: What do you think would be the most important thing for healthcare professionals to know?
3. FOR THOSE WITHOUT AN OSTOMY: What do you know about stomas? And is there anything more you want to learn about them?

Let me know in the comments :)

Send a message to learn more

Welcome to Stoma School!

The Aim:
To educate and inform healthcare wards, departments, clinics and more on the following:
- How to deal with stomas
- What stomas are
- How to change a bag
- Stoma care, compassion, respect & dignity