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Living With A Stoma

Hi, I am Natalie and I am 34. I have a number of chronic illnesses including Crohn's Disease. In 2016 I had to have surgery on my bowel and this resulted in my ileostomy, which I named Stanley.  

What Is A Stoma?

There are different types of stoma, but the three main ones related to the digestive and urinary system are colostomy, ileostomy and urostomy.  There are many different reasons that people have to have ostomies formed and these include IBD, cancer, injury and bowel obstruction.

A colostomy is created from part of the large bowel and is usually placed on the left side of the stomach.  An ileostomy is created from part of the small bowel and is normally located on the right side of the stomach.  A urostomy is formed when there is a problem with the bladder and it needs to be removed.  The urostomy enables urine to be removed from the body, whereas colostomy and ileostomy output is faeces.

Roughly 1 in 450 people in the UK live with a stoma and sometimes these are temporary and sometimes may be permanent, depending on why a person needed it in the first place.

Read More: What is a Stoma?

My Ileostomy Surgery

I required surgery in April 2016 due to severe issues with my Crohn's Disease. I had dropped down to 40kg, could not eat without it passing straight through me or vomiting it straight back up and I was severely malnourished.

Natalie underweight

I was told I needed surgery on my 30th birthday - this was not the bag I was expecting if I am honest! Two days later I woke up with Stanley - the name I gave to my ileostomy.  After the initial surgery pains subsided, I cannot tell you how quick the transformation was!  My stoma 'woke up' really early so I was able to start eating after a couple of days.  I spent two weeks in hospital following the surgery, seeing the stoma nurse daily who taught me how to change my bag and gave me lots of help and advice, as well as being checked on by the doctors who were particularly keen to see me start putting weight back on, which I did.

Natalie with her two boys

Getting released from the hospital was emotional.  I had spent over a month in there altogether but was so happy to be getting back to my two boys.  However, it was at this point that reality hit me - I now needed to actually live with this thing!

Getting My Life Back

One thing that got me through those first few weeks and something that I still find very important is the online ostomy community.  I have made some amazing friends, met my boyfriend and have started my blog, The Spoonie Mummy, after getting amazing advice and support online.

Read More: Natalie's blog The Spoonie Mummy

Natalie with her boyfriend

It was this community that got me through the first few months with a stoma - what to wear, what to eat, what bags to try, the rough bag changes and those first few bag leaks.  I also learnt a lot through experience and from my own eagerness to research and find out more.  

Finding Confidence After Surgery

Confidence is something that takes a hit when you have a surgery like this.  Your body is changed drastically and it takes some getting used to.  You also have to learn a new way of living - your 'new normal'.  

This is where the AccessAble Stoma Friendly Toilet symbol is going to come in really handy.  I know many ostomates who have sadly, stopped going out following their stoma surgery.  This is through fear of not being able to find somewhere suitable to empty their bag or change their bag if needed.  Having a stoma is generally invisible to others - and this comes with the added worry of using disabled facilities and being chastised by people who do not understand that not all disabilities are visible.

AccessAble are helping raise the profile of invisible illnesses through their website and App, which have over 30 symbols defining accessibility in thousands of locations around the UK.  Accessibility can mean different things to different people and the AccessAble symbols include information for mobility- mpaired walkers, gender neutral toilets, safe/quiet spaces and many more.  It is great that a Stoma Friendly Toilet symbol has been added to the site and this will help many ostomates identify places they can go when out and about, to change their bag if needed.

Read More: AccessAble partners with Colostomy UK to support Stoma Friendly Toilet campaign

So, What Does an Ostomate Need?

To be considered stoma friendly, we obviously need to know about the bathroom facilities in a particular venue!  We are all told about the 'emergency kit' you should take out and about with you 'just in case' - but what happens when you need to use it? Some of the things that an ostomate will need, should they have to change a bag while out and about include:

  • A mirror - One thing I have noticed is that many accessible toilets have low down mirrors for wheelchair users which is great - but not all disabled people are wheelchair users!  I change my bag standing up and need to be able to see my abdomen and stoma while doing this.  A mirror full length mirror is best for this.
  • A shelf - I need to lay out the things I use to change my bag so I can grab them quickly.  This includes scissors, a clean bag, wipes, adhesive remover sprays, barrier sprays etc. These need to stay clean and dry so I need somewhere separate and hygienic to place them.
  • A bin - Our stoma bags and the products we use can go into normal rubbish bins and most ostomates will place these in a rubbish bag which can be tied up before we dispose of it.  Every cubicle, including in the men's facilities, which is where this tends to be lacking, needs to have a bin for these to be put in, without us having to exit a bathroom holding them.
  • A hook - A bag leak is often unexpected and sometimes we don't know it is happening until it is too late and output has seeped onto our clothing.  This can result in us needing to change our clothes, as well as do a bag change.  Having to put clothes down on top of a public toilet or even on the floor just adds to the humiliation, so we need space to be able to hang these up, to keep them from getting soiled while we change.

Natalie showing her stoma bag

I am really grateful to AccessAble for adding the Stoma Friendly Toilet symbol to their website and App as I think it is going to really help build confidence in ostomates who want to go out and about.  As an ostomy advocate, I hear from so many people who are struggling with different elements of post stoma surgery life. Being able to direct them towards the app, where they can find the information they need to feel confident about visiting somewhere, is going to really help. My stoma not only saved my life, it gave me my life back and I hope this will help other ostomates who might be struggling, to feel this way too.

Watch: The Importance of Stoma Friendly Toilets

AccessAble Champion