Thanks to the incredible efforts of campaign groups, individuals, healthcare companies and charities, the world knows more about stomas. With that increased awareness comes a lot of good things, but unfortunately there’s still many ways in which those with an ostomy can feel ignored, misunderstood or sidelined. Here are just 5 ways in which we can be left feeling invisible with a stoma. 

[ This post is in honour of 5th October Stoma Awareness Day 2024, the theme of which is “Do You See Me?”]

Feeling Invisible With A Stoma

1. Lack Of Stoma-Friendly Toilet Facilities

Nobody wants to use a nasty public toilet with doors falling off hinges, no toilet roll, no hand wash, or a toilet that hasn’t seen bleach since the 80s.

It goes a little further for disabled individuals who may need a larger cubicle and entryway, grab rails and lower seating. For ostomates, many can empty a stoma bag in a regular toilet the majority of the time. However, this isn’t always the case and thus stoma-friendly disabled toilets are needed.

For instance, many of us with a stoma will know the sense of dread when we suspect a bag leak. Desperately trying to find a public loo is one thing as they’re often few and far between. And then you need to find a disabled loo and hope it’s kitted out well enough to be able to change your bag. At the very least we ideally need a pull-down shelf next to the loo to put our stoma products on rather than leaving them on a dirty floor and struggling to reach them, a sink nearby for cleaning, and a little time without someone banging on the door to rush us.

2. Being Challenged Using Disabled Facilities or Services

Whether it’s waiting to visit a disabled toilet, using a Blue Badge or buying a disabled concession ticket, all of these things can be made more difficult by those around us who question our legitimacy. It’s called an invisible illness or hidden disability when it’s not immediately obvious to someone looking at you. Some people with a stoma will be greedy enough to have other chronic conditions but those may not always be noticeable either.

Judgement and challenge can either come in a more inconspicuous form: A stare, a snooty look, a general judgemental vibe. Or it can come in a far more overt, opinionated form: Someone telling you that you shouldn’t be so lazy, claiming you look “fine” and requesting information on your condition, saying you’re breaking the law using a disabled parking bay, someone asking you why you’re so special that you shouldn’t just be queuing for the regular toilet.

Whatever the form of the challenge or judgement, it can be awful to face it. I’ve had a number of instances myself and despite getting more assertive than I ever used to be, I struggle to react in a way that I’d like. I find I start to shrink into myself and feel embarrassed, and only afterwards do I start getting angry and annoyed, both at that person’s nastiness and my inability to speak up for myself. How you react to something like this is very much an individual choice but I think many people feel pressured to explain themselves, to show they’ve got a stoma (or other conditions) and demonstrate why that person is wrong in their assumptions.

We shouldn’t have to explain ourselves. If it’s a matter of just saying “I’m eligible” and that’s the end of it, that would be okay, but it’s often not. We shouldn’t have to face this sort of attitude and certainly not any nasty comments. It can put people off using a disabled parking bay, deter them from going into town, maybe make them reluctant to leave the house at all.

3. Overlooked In Literature

The general social understanding of stomas has historically associated them very much with the elderly, as something related to being infirm, incontinent and it generally just a bit gross and unhygienic. Thankfully that incorrect and insulting portrayal is now changing and you can see it in the literature that’s given to stoma patients, online information pieces and news stories featuring ostomates.

But when it comes to stoma patient literature and many media articles, I’ve found a lot of what’s said doesn’t seem to relate to me, or indeed perhaps to many of us. For instance, i’s often suggested that you can basically lead a normal life with a stoma and do all the things you did before. I can’t. It suggests you can pretty much eat what you like but just avoid odd trigger foods. I can’t. It suggest you can wear whatever you want as you did before. I can’t. 

It suggests you can work, travel, socialise, exercise, have sexual relationships and generally live with minor impact on your life, ignoring that many of us have other physical health conditions to contend with in addition to an ostomy.

Having a stoma is also typically portrayed as a life-changing thing in a uber positive way. As though everyone having this surgery should be grateful and that the result is a significant improvement compared to life pre-stoma. That’s not always the case either. For instance, while someone with Crohn’s may find a stoma ‘gives them their life back’ and any problems they face with it may be minimal or non-existent, another person may have been in the position of having a stoma for another reason, like a car accident or surgical errors, and then experienced ongoing problems with it ever since.

Literature and media also often ignore the fact that our experiences overall are diverse and unique. It doesn’t take into account the existence of other health issues, any ongoing problems with the stoma, the impact on other areas of your life like diet, exercise, relationships and employment.

It also doesn’t consider the other significant part of the story, which is how we as individuals handle the experience and the knock-on effects to our mental health. It doesn’t consider that : we don’t all start at a different benchmark to begin with, we have different personalities, different lifestyles, financial situations, home obligations, social circles. The person with support from close friends, an active social life, a financial safety net, less home pressures, more time to rest, and a life with meaning may fare significantly better than the person who doesn’t have these things.

Yes, a stoma may be life saving for many of us. But that doesn’t mean we all fit the stereotypes, the stories and the portrayal of what having a stoma is like. 

4. Feeling Ignored By The Healthcare System

The local NHS guidance in my area (before I moved in August 2024) changed over the last couple of years. When I first had my stoma, I was told I could easily choose from an array of different products to find what suits me best, that I could use scented drops to make the experience less harrowing, that I could get both a spray (for home) and wipe (for going out) format of adhesive remover, that I would get a set amount of stoma pants and support garments to help prevent hernias each year.

All of these things were then taken away. To cut costs, the government and the NHS always look at the easy targets first rather than the obvious, but more challenging, offenders. What’s more, it’s now very difficult for me to ever change a product, despite having a medical need to, as I need to get a stoma nurse to write a letter to the GP to give permission for its use. It’s a lot more work and hassle for all involved, and at a time when medics say they’re already too busy. You can’t easily order products a little earlier, either. They try to get you to stick to a specified amount of ostomy bags per month and prevent you ordering earlier than they think you should. But it doesn’t work like that because there are accidents, there are leaks, there are unplanned emergencies. We should be able to have a small back supply of products in case these things happen or incase prescriptions and deliveries are late, without being made to feel like a nuisance and without risking running out of products, which is a very stressful experience!

They don’t care to try to understand and it leaves us struggling to get what we need, feeling we’re a burden and that the healthcare system will do whatever it can to screw us over. 

It’s a sad state of affairs when it feels your healthcare system and government are working against you.

5. Doctors & Nurses Lacking Stoma Knowledge

I’m sure I’m far from alone in finding local GPs knows very little about stomas and surgery-related bowel problems. Unless you’re under the care of a surgeon at the time and they have urgent appointment availability, it can prove very difficult to get specialist help. 

I’ve had countless small bowel twists since I had my stoma and a number of those really bad ones have landed me in A&E. The lack of understanding, not to mention compassion generally, can be outstanding and immensely dangerous. Even when I’ve taken a letter in from my surgeon specifying immediate use of IV morphine, nurses have refused to provide it. When I need a catheterisation, they refuse. Once when I was particularly bad and nobody was doing anything to help after a few days in hospital, I had a surgeon from a different speciality see me and just tell me to lie flat and stop getting worked up. I was worked up because nobody was listening and nobody knew what they were talking about. Thank goodness another doctor was around and spoke to me privately afterwards; he spoke with another surgeon, who got me in for emergency surgery. I would died otherwise.

It doesn’t just make the experience of trying to get medical help difficult and immensely off-putting. It’s also seriously dangerous when that lack of knowledge and refusal to listen to the patient gets in the way of correct diagnosis, care and treatment. 

★ ★ ★

Do you feel the general view of stomas has improved over recent years? If you live with a stoma, do you feel ignored and misunderstood by your healthcare system or by amenities in your area?

Source: Feeling Invisible With A Stoma – Invisibly Me