Home General Info & Awareness Feeling Invisible With A Stoma

Feeling Invisible With A Stoma

by InvisiblyMe

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. 

A close up photo of a purple sticker on a wooden door that reads "not all disabilities are visible", with the hashtag "stoma friendly".

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.

A photo of me standing up with hands on hips with a black top, jeans and long red hair. The top is pulled up slightly to show a red and white Hello Kitty themed stoma bag cover.

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?

A black background with a photo of me lifting my top to show the stoma bag (and a Hungry Caterpillar cover). My face is obscured with a black and white heart. Underneath is the post title: Feeling Invisible With A Stoma.
A black scroll divider.

Caz  ♄

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18 comments

VJ October 4, 2024 - 3:25 pm

I can honestly say that I have seen nothing promoting awareness here in Canada. You are my only source of information at the moment, and I can see how frustrating it must be. Keep writing and being a source of information, although I am sure there are times when you would embrace understanding. That the medical world does not know stymies me.

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Looking for the Light October 4, 2024 - 3:51 pm

I’m so glad you did this post, let’s keep people taking and learning more. Let’s make the onversation normal vs. awkward. You dod a great job and I want to reblog to keep the learning gong. Survived the move ok?

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InvisiblyMe October 30, 2024 - 5:15 pm

Thank you very much lovely! I was so hugely embarrassed age 19 when I first had tummy issues that I kept it all to myself. With the stoma, and my older age (!), I feel it’s easier to say it out loud. To laugh at it, to make it less heavy a weight to hold onto and hide. The move has been very full on but we’re on the other side now! It has just been problem after problem I’ve had to deal with so it has been overwhelming and exhausting and I’m so far behind on everything that it’s a joke. I’m sorry I’ve not been in touch or been on WP too much. I saw your post about WP, which is more than a little disconcerting. It better not be disappearing any time soon! Sending love xx

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Looking for the Light October 30, 2024 - 6:30 pm

Taking care of yourself and the family is the most important. It’s a shame you don’t have your bother to help but it is what it is. Blog when it’s right. Hugs.

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George October 4, 2024 - 4:55 pm

Everything you mentioned can be applied in the US, as well. In the restrooms, the majority of men go directly, to the accessible stall. It happens so often that people assume others don’t have a need. Ostomies and wheelchairs are routinely associated with aging. Everything you said is universally true.

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Ogden October 4, 2024 - 6:45 pm

My boss retired and wound up getting bowel cancer, they removed some bowels and left him with a stoma, which they said they would remove at a later date, a couple of years went by and nothing happened so as I understand it, he ended up paying private to have the thing removed via an operation 🙁

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InvisiblyMe October 30, 2024 - 5:17 pm

Oh my goodness, that’s awful to be lumbered with a private surgery cost for something the original provider had agreed to do! It’s amazing that in the case of cancer, a stoma can be so vital and life-saving. I hope your boss is doing better and better since then xx

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Nancy Homlitas October 4, 2024 - 10:12 pm

I’m so sorry you’ve had so many bad experiences dealing with your stoma. Many would likely benefit from improvements to public restrooms as you have suggested. If you have a history of certain health issues and the medical staff has your case file, then their negligence is unacceptable-and apparently life threatening! I pray your health improves and you can have your stoma removed.

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greg October 4, 2024 - 10:17 pm

Thanks for sharing. I’ve found very little stoma awareness in my life. I think I’ve mentioned before that I have a close family member with a stoma, and most of what I know comes from him.

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InvisiblyMe October 30, 2024 - 5:19 pm

I wonder if your close family member found the same, with no real stoma stuff “in real life” until they had one themselves. I was the same, knew nothing really about it. Never saw it mentioned anywhere. Then I came online to do my blog and found some amazing people writing about their experiences and the mainstream media has picked up a couple of case studies in the last few years, too, which can help with general awareness and to make bowel stuff generally into something people feel they can talk about and seek help for.

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The Oceanside Animals October 5, 2024 - 3:10 am

Java Bean: “Ayyy, we’re sorry for all the things you’ve had to endure from the public and even from the medical system! That’s ridiculous that they ignore and dismiss what you need. They don’t even know what they don’t know!”
Lulu: “We hope that people become more aware of this, especially the ones who shouldn’t need to have their awareness raised. We have plenty of tail wags—”
Charlee: “And purrs!”
Lulu: “—for you, but not for them, until they shape up.”

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James V Viscosi October 5, 2024 - 4:27 pm

Empathy can be in such short supply sometimes, even in places where you would expect to find it … 🙁

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Despite Pain October 7, 2024 - 3:54 pm

Oh Caz, that is so worrying about your hospital treatment. That lack of knowledge is awful. I can’t get my head around the fact that a doctor told you to lie still and calm down. You could have died!! oh my goodness….that is shocking.

I think that the uber-positive stories about stomas are supposedly to help people who are new to them. I think that happens with all health conditions for the same reason. But people need the realistic stories too. And that’s why your blog is so helpful.

I hope you’re doing ok, Caz and the house move went to plan.
Take care,
Liz x

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Janet Gogerty October 7, 2024 - 8:08 pm

That is good you are laying out facts about stomas. I have only personally known two people. An elderly friend got on well with hers after bowel cancer and offered the chance of a reversal decided to keep it. My sister-in-law with Crohns had hers reversed and had a few dramatic stories to tell.
Public toilets generally are a disgrace. Probably designed by men, never any shelves, whether you want to rest your shopping bags or sort out medical stuff. Not enough toilets full stop. A cafĂ© with just one disabled toilet for everyone to share is unfair – for everyone! I hope your recent move has gone well.

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InvisiblyMe October 30, 2024 - 5:22 pm

I’m sorry your sister-in-law was left with what I imagine aren’t fun stories to tell! You tend to hear the life-saving and positive aspects of stomas, if you hear anything at all about them in general media and discussion, but those real experiences that aren’t so happy tend to get hidden away. Public toilets really are appalling in so many places. It’s not just ostomates. Or people who need to pee a lot (also me!) Nobody wants a gross toilet, no soap, broken loo seats. It makes you feel ick just opening the door of some of them. Even big chain stores I’ve found can be appalling and they actually have the money to make them usable! xx

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thebackgardennaturalist October 11, 2024 - 10:27 pm

Such an informative post Caz, thank you for sharing your experiences & highlighting living with a stoma. I’m so sorry to hear you haven’t received the compassion & understanding you should have from medical staff, I’ve been there with other medical issues. Sending you best wishes 🙂

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Blanca October 29, 2024 - 7:45 pm

Thank you so much for raising awarness about this condition and sharing your personal experience living with a stoma. I wish there was more understaning with the medical staff and you felt better cared when going to your medical appointmentts and hospitals. I hope you and your mum are doing well.

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Terre January 6, 2025 - 2:25 am

I am sorry you run into all types of complications. I know here in the US there are a lot of people that don’t need disabled parking spaces that use them. Or they are so (rude/stupid/fill in the word) that they park in the lined off area NEXT to a disabled space (the space that is supposed to be for the vehicle’s ramp or area where the person that needs to can maneuver in and out of the vehicle. I am sure that there are a lot of rude people you run into, but I also think that there are people the “cheat” and so others are less trusting.

All things, especially medical things are generalizations. Nothing takes into account the individual. Again, I am in the US and our nutritional recommendations are general. Medications and any type of medical procedure is general. I am agreeing with you and understanding that a stoma situation shouldn’t be treated like “general” things.

I can imagine how horrific it is to have your supplies limited. I remember having a non-life saving prescription once and trying to get an additional bottle because I was going on vacation and I was told no because it wasn’t in the allotment. Again, this boils down, to me, to cheaters. If people were always trying to cheat and steal then actual people following the rules and having an actual need wouldn’t suffer.

It is also horrific how no one listens to you. It is sad that medical staff has to be so guarded. I don’t think it is just on TV that there are people that go into medical facilities just to get drugs. I was once told by a nurse – after I told him the pain medicine was not working – “well it is not meant to take away the pain.” I often think of that and wonder if his method was to shock patients into not having any pain. I was totally baffled by that statement. Yes, the nurse told me that the pain meds administered were not to take away pain.

Thank you for sharing your feelings about being made to feel invisible. It must be very frustrating. Your blog is very educational. I am reading after New Year’s so I am going to say Happy New Year. I hope your 2025 will be great.

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