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Inspired and a follow up to my 2017 post “When Does Having an Ostomy Feel ‘Normal’?” and my 2019 post This is Not My First Choice

In a very similar vein to my post on ‘when does having an ostomy feel ‘normal’?’, today I want to talk about how it feels to have a stoma bag; and if it can ever fade into your subconscious.

Now, #stoma101 – a stoma is a Greek word meaning ‘mouth’ and is an artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea. Most known stomas are colostomy, ileostomy and urostomy – all formed from parts of the digestive system as a means to removing the waste products the body produces -urine and faeces.

To collect these waste products, ostomates wear bags to cover up the stoma. They can be closed bags, drainable – with an open end to remove the output – or with a tap – easier for urostomates dealing with urine.

What does a stoma feel like?

On creation, these openings are red, swollen and inactive due to surgery. Handing of the bowel – of which all three are made from – and indeed the surgery itself leads it to being swollen; and without any waste products to remove from the body, they are in active. The redness is of normal, healthy tissue.

In time, the swelling goes down, the stoma becomes smaller and more manageable with changing the bag, keeping the skin underneath clean and healthy as well as monitoring the output from the stoma itself. There is no pain associated with a stoma – a healthy stoma will not hurt the owner in the slightest, unless it is damaged.

What does a stoma feel like when it is ‘hurt’?

What we do feel is more a ‘soreness’ which comes form output touching our skin and basically, eating away at the surface. The stoma can change size at any point really, so keeping a check on sizing is key to stomal care. Also, it’s important to adapt to changes that can come from products that are being used. As a basic rule of thumb, less is always better.

This is why the right products need to be used to achieve an optimal seal around the stoma and comfortability for the user too. Stoma care nurses are helpful in this aspect, as they see all types of stomas in their line of work and have the experience of catching issues quickly.

Addressing soreness when it first begins is key to peristomal skin care and in my mind, a healthy acceptance of this new lifestyle the user will have for either months, years or their lifetime.

I’ve had bouts of soreness which has resulted in changing of products throughout my time with my current stoma. It does sometimes hurt your self esteem when a problem arises but I’ve learnt that these things happen to us all, and there is usually a fix for them.

Having a comfortable fitting bag on my skin almost makes me forget it is even there, until I need to empty the contents.

So when does it fade into the back of your mind?

Despite having a comfortable bag and good change routine pretty much since a couple months after my surgery – this would be about November of 2016 – I have more of a mental struggle with my stoma bag.

It is now not about acceptance – but it was an issue in the beginning, a tale for another tpye of post! – but surrounding anxiety of wondering if anyone knew I had one. I would subconsciously touch the outline of my bag under my clothing during the day and check it was still secure. Not that I’ve ever had a massive leak or had it burst, but I was fearful of it happening.

And I suppose, I’ve never gotten over that part.

I can, of course, still enjoy life with my stoma bag. I honestly don’t think about it all the time like I used to after my operation, or when I was in somewhere new – for example, starting a new job, or attending college – because that is now ‘normal’ to my routine. And I do try and own the fact that I have this different anatomy because of a chronic illness and while it is invisible, I am not. It’s a tough line to walk some days. But on the whole, I don’t notice my bag. But that is a recent thing, for sure.

What do other’s experience?

I crafted a Twitter poll to find out. Here are the results:

It is interesting to note that most of those who answered said ‘never’ or were ‘unsure’ and I think this speaks some volumes as to what we need to pursue in mental health with a stoma. The poll was anonymous but I did have several people reach out and add their voice to my question. Some said that it took time to find the right fit for them with products and once they did, it was much easier. Others raised a valid concern over how your stoma is formed and in what circumstances; as some still experiences problems after the fact.

The big take away for me was that there was alot of new honesty into a question we probably get asked alot by non-stoma friends and family – ‘Do you notice it any more? Can you feel it? Does it hurt?‘ and for us, after a year or more probably, we would have to think about it; because it has become normal.

But how have we gotten there? How have we gotten to ‘normal’ for some, but not others?

Do you have any questions or queries? Or just want to share your own experiences?

You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram

If you enjoyed this post check out Hospital: Fear & Anxiety or Hope & Comfort?, Changing Attitudes and What I’ve Learnt after Six Months with my Ileostomy