Preparing for ileostomy surgery: Jake’s story

ERIC Young Champion Jake shares his experience and feelings about getting a stoma. Jake is 11, from Stoke-On-Trent, and wants to help other young people like him.

I am Jake and I have pancolonic hypermotility. This means my gut doesn’t work properly at moving food and drink along. I’m getting a stoma soon, something that could help me. I wanted to write this blog to let people know about what it feels like when preparing to get a stoma operation.

Photo of Jake

What does it feel like when you’re told you’re going to have the op?

In a few days time, I am going to have an ileostomy surgery. I used to have an ace stoma, which was not working well. After being told a few different things, I found out I was having an ileostomy on a car ride back from an appointment.

I didn’t know much about the procedure or what that meant for me, so I was confused and a bit worried about it all. All I knew was that I was going to have a colostomy bag.

Getting ready for the op

After a few weeks, we met a nurse at Alder Hey Hospital, who explained what this meant to me. She also gave me a book which helped me understand what was going to happen. It was called Using a Colostomy Bag by Harriet Brundel.

We also got told the time and date, which made me feel better and more prepared.
Being prepared definitely helps. I have been using a medical doll with a stoma, to help me practice. I also have a buttony bear, which is a bear with a stoma. Both the doll & bear have helped me understand using a stoma.

When packing my hospital bag, I made sure to include:

  • My pyjamas
  • Key for the toilet
  • Tissues to wipe the stoma
  • Custom stoma covers
  • Something to make the stoma smell better
  • Headphones & a laptop
  • Hospital gowns made by pyjama fairies - specially made hospital gowns for children aged up to 16. They are comfy, make you feel good in hospital and are easy to get off after surgery when you’re in pain.

Jake's advice:

It’s only a few days left before my surgery, so my advice would be - try and understand what your surgery is and be prepared as much as you can be.

Also… make the most of the sleep!

More help and information

Using a Colostomy Bag by Harriet Brundel.

Find out about Pyjama Fairies.

Buttony Bear, the bear which has helped Jake learn about having a stoma.

About the authors:

The ERIC Young Champions are a group of young people aged 11-18 who have come together to raise awareness around bladder and bowel problems. They've shared videos and blogs about their conditions to help others.

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