5 Years Living with a Stoma: 5 Lessons Learned

I have been living with my stoma, Winnie, for just going on for 5 years now. Here are the top 5 things I have learned about myself and Winnie.


Never, ever become complacent! I have and I learned the hard way. I was at my sister-in-laws house and drank way too much coffee, got way too engrossed in the conversation, then "boom" my bag came away and the contents of which then leaked all over me.

It is important to be aware of the volume that you are drinking and to check regularly the contents of your bag.

Emergency supply bag

Arrange and compile a "supply bag" so you are never caught without a backup plan. No matter how long you are going to be out.

This should contain as a minimum:

  • A new appliance,
  • adhesive remover,
  • dry wipes, and
  • a disposal bag to put the used contents in

I felt like I had so gotten used to Winnie and how she behaved that I believed that I no longer needed to go out with an emergency supply bag, after all, it just bulked my handbag. I hadn't needed to use it in over a year. So you can probably guess the next bit, I was out in the car with my husband when Winnie decided to have an outburst, I was drenched and my bag was hanging off of me, and no "emergency supply bag".

While speaking of this, it is also very important that you regularly change the contents of your emergency supply bag to ensure that the contents are not out of date or damaged.

Regularly measure your stoma

You will usually find a template to measure your stoma included in the box of stoma bags. If not speak to your stoma nurse or medical practitioner.

I stopped measuring my stoma, as again I felt that I had it long enough and that was the way it was going to stay. Wrong! Your stoma can and probably will change shape over time.

It is imperative that you measure your stoma regularly to ensure that you are ordering the correct size fit for the stoma bag. I measure Winnie about every 3 months.

Look after your skin

It's really important that you gently remove your appliance, preferably with medical adhesive remover. Otherwise, you may end up damaging your skin.

To remove any adhesive residue that may be left on your skin after removing the appliance you can use more adhesive remover. Soap and water or some folks prefer to use diluted white vinegar. However, you should try to avoid putting anything onto open or damaged skin without speaking with your doctor or stoma nurse first.

Embrace the new you

And last but not least, learn to love yourself. Don't be afraid of trying new things, as actually, having a stoma doesn't have to stop you from living a fulfilling and exciting life.

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