Ostomy Awareness: More Accepted in the UK Than the US?

Is it just me, or does it seem like there are more people with ostomies in the UK than in the USA? Or is it that it's more acceptable and openly discussed there versus the US, where it seems to be almost shameful and a taboo subject? You don't know how many times I have been in the hospital in the last 11 years and some of the nurses or CNAs haven't even heard of an ostomy?!

Hello Cappabarstar. It's an interesting question you ask. Somewhere on this site a long time ago I saw a that they did list how many people were in the UK. But that would only be those who were using this site. My own impression is that there are plenty of people with stomas in both the US and the UK but the later being such a small island in comparison the numbers per population may seem higher because they are closer together. The greatest thing about the UK is that the procedures, equipment, consultations and advice are all free on the NHS so we have the opportunity to talk to professionals without the worry that it might cost an arm and a leg. Talking to professionals does tend to break the ice for talking to other people as well so maybe this is why some of us are open to discussing our issues. However, I get the impression that people in the US are not usually shy in expressing themselves so I guess it is about how the individual feels about their own situation as to whether they are willing to open up to others about it. This is surely not likely to be any different for UK citizens as it for those across the pond.

As for the medical 'professionals' there are plenty in the UK who seem to be completely oblivious to the subject and I suspect this might have something to do with the fact that everything is so specialised and compartmentalised. Those who specialise in the subject tend to have the knowlwedge and those who specialise in something else don't seem to know much at all about things outside their own specialisms.

My own GP openly admits that he doesn't know much about stomas and has learned a great deal from what I have told him. However, he is quite happy to keep referring me to people who do know about these things, which I feel is better than pretending that he knows something when in truth he doesn't.

Best wishes

Bill

I appreciate your insight!  Very wise!  Thank you for your reply! 😀

Your Great Dane is lovely! The only person you need in your life, haha!

Lol!  Yes I agree!  She's the love of my life!😊

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

She's lovely :)

Interesting question. I am in Australia, a population of just over twenty million, and apparently, there are 45,000 people currently with stomas. That doesn't take into account those who have had reversals. Not too good at math; otherwise, I would work out the percentage.

I've spent the last couple of weeks studying the history of ostomy surgeries and ostomy appliances. Colostomy, Ileostomy, and Urostomy procedures started mainly in Britain and France around the 1800s. The procedures spread to Germany, Austria, and Australia and much later to the United States. Ostomy supply companies in the United States were not established until the late 1970s and early '80s.

We're (Americans) still fighting the stigma of having an ostomy.

Daisy

Hi CappbarStar, I've had my ileo. for 30 years, and as you say, some healthcare people don't even know what an ostomy is. I was in the hospital for dehydration a few years ago, and two young nurses came into my room and wanted to see my ostomy—that's how they pronounced it. I said they couldn't see the stoma as I wear an opaque pouch, but they wanted me to take it off. I said it's an ileo. and could make a mess without notice, so that backed them off, but they still asked a bunch of questions.

Very interesting! And yes, I agree about us Americans. I see pics of people in the UK sunbathing wearing bikinis or men with swimming trunks on, and their bags hanging right out like it's part of their ensemble! I say bravo to them, but I wouldn't be caught dead doing that in the US! I wonder what the depression rates are and how they differ in the US versus the UK with regards to ostomates? 🤔

That is just crazy to me!  I thought that was part of their training?  I guess not. 😕

I would like to add to Bill's explanation.

Prior to our procedure, we are introduced to a stoma care nurse, who guides us through the process and shows us pouches, etc.

Before the procedure, the stoma care nurse will measure and mark the position of the stoma.

After the operation, she visits you at home to examine your stoma and make suggestions. In my case, she left it to me to decide when she should stop calling regularly on me. This was not a problem as I had her mobile number and email, together with her office number.

After 3 years, she is still available to me if I have a problem or need advice.

My GP also told me he was learning from me about ostomy problems. He understands the theory, but the daily practical side is a different story.

Yes, we are a smallish island, but with the support we get from the NHS, our supply companies, and most of all our Stoma Care Nurses, it means that many old and new ostomates don't really see the need to post questions online, and those who do appear only to do so for a second opinion.

But I would not say we are more outspoken than other countries.

But for the record, and contrary to common belief, treatment given by the NHS is not free but comes out of National Insurance payments paid out of earnings during our working life at varying amounts depending on your paid work income, with some exceptions for low-paid workers who fall below a certain level, and of course, you stop contributing once you reach a certain age.

Note

When I have used "she/her" above, it does not mean that only ladies are stoma care nurses, but we could have a male specialist stoma care nurse.