10 things I wish I could’ve told myself before having ostomy surgery

I remember being sat in a hospital bed alone aged 20 being told I was to have a ‘colostomy’, having no idea what it even meant.

What’s worse, is that on ‘surgery day’ it was changed to an ‘ileostomy’ which freaked me out even more.

I had no idea as to what either of these things were or what they would entail. Whether they’d be life-changing or whether they’d be painful. I didn’t have much information to me when I needed it most.

The scary thing is that this happens a lot – unless you know what one is or know where to look, you’re lost on advice and support.

People with ostomies need more information on their life-changing surgeries before it happens, so that we can be better prepared during recovery.

Here are 10 things I wish I could have told myself before ostomy surgery.

1. What it was

 I had a colostomy as a baby but it was reversed aged 2 so I literally had no clue what an ostomy was, especially when they told me I needed an ‘ileostomy’. The nurses nor my surgeon told me what it actually was, they just gave me ‘info booklets’. It sounded like it was going to be the most horrific thing at the time!

2. Older people are not the only ones with ostomy bags

Like I said above I was given a load of ‘information booklets’ and for some reason it was just people over the age of 50 in these booklets and their stories… and nothing for people in their 20s.

3. There is so many other people in your position

I wish I could’ve told myself I wouldn’t be alone. I was so surprised to find out how many other people live with ostomies.

4. You won’t need anymore laxatives

For me personally, this was a big deal. I was on laxatives daily for over 15 years so the fact I don’t have to have that now is a huge plus!

5. You’ll feel so much healthier now with a bag than you did without it

I was having a bag for a reason… because I was ill! Having the bag has given me a another chance of life. I wish I’d known this before surgery, maybe then I wouldn’t have been so scared.

6. Your social life will be way better

I was so ill before ostomy surgery that I didn’t really get out much because I felt so sick and was in pain. Now that I have my Ileostomy bag I’m no longer constipated and in discomfort – meaning I feel more comfortable in going out.

7. Social media will be your best friend

Who’d have known? Social media is amazing to get educated on ostomies and to meet new ostomates – there’s so many online support groups out there!

8. Food can be your enemy when you have an ostomy

I’ve had a few problems when it has come to eating certain foods, especially with an ileostomy. Different foods can cause blockages and it’s always different for different people. But you also shouldn’t take those ‘Foods to avoid’ lists so literally – because different things can also work for different people.

9. Educate yourself and educate others

Google is a great thing. Do the research and get educated on having an ostomy but also educate your family and friends too, you need their support also.

10. Life is what you make it and it can only get better

Everything feels so negative when you’re told you’re having this surgery. And it’s understandable, it’s a scary time – but you have got to take the positives out of the situation, those being that you’re healthier and able to live your life out of pain… it’s the best way to begin living a happy and fulfilling life.

Words by Danielle McCormack

Author: dannimccormackx

23 year old with an ileostomy trying to make a difference.

One thought

  1. These comments will be very helpfull to anyone waiting to have this op. So full of positives. Its just a pity that u didn’t have the right information before u had yors.good luck in the future. Love sue x


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