Carol's story

Meet Carol Quast

My personal stoma journey and embracing colostomy irrigation as a way of life: a member’s perspective

I arrived back in Australia after living 20 odd years in the UK in December 2011. I was 55 years old and there was a Bowel Testing Kit waiting at home. I certainly hadn’t used one of these before.

I sent it off in January 2012 assuming all would be OK as I didn’t have any obvious symptoms. It came back positive. My doctor suggested a colonoscopy.

This confirmed I had a malignant rectal tumour. I was shocked and so were all my family and friends. A CT scan and further tests pursued.

On 21^st February 2012 I had my operation – the result: a permanent stoma/colostomy and abdominal resection at St. Vincent’s Public Hospital.

There was so much to take in but I had support in hospital from the Stoma Nurse helping with:

care
using appliances
answering my never-ending questions

It was all still overwhelming, and I thought I would never manage or get it all under control. With time and patience, it started to make sense and I started to feel empowered.

So, who am I?

I am a mother of three wonderful adult boys, a wife to an understanding and supportive husband, and an educator by profession.

I am also Chairperson of NSW Stoma Ltd and feel that volunteering my time on the board is giving back to the Association to help support members.

My journey towards becoming an ostomate and colostomy irrigation

Just before my operation

This is me two nights before my operation, out to dinner with my sister and friend, scared of the unknown and trying to stay positive.

What all new ostomates need – SUPPORT

I couldn’t change what was about to happen so I needed to accept and make the best of the situation

My personal mantras which helped me:

One step at a time
Don’t overthink
Try to see the positive in all situation

Three weeks after my operation

We went on a trip to Canberra because of my husband’s work. Ambitious, I know!

I took it easy and rested a lot but also went to the theatre and started to feel a little bit normal again.

As an ostomate we need to seek and ask for help and information: Where? Who?

Stoma nurses
Local hospitals
Stoma organisations (NSW Stoma Ltd)
Stoma support groups
Other stoma patients
Therapists
Ostomy Internet information sites

Two months after my operation

Early on I had an appointment with NSW Stoma Ltd’s (then Colostomy Association) Stoma Nurse, Anne Marie. She is there for our members for a one-to-one appointment. This is a free service we offer at NSW Stoma and an invaluable resource.

Not only did she listen, she helped me physically by treating and giving me tips and suggesting products for the red and angry skin around my stoma. She also suggested I might consider colostomy irrigation as she thought I would be a good candidate – I contacted my colorectal surgeon for agreement.

WHAT IS THAT?

Colostomy Irrigation

Colostomy irrigation is a way to manage bowel movements by emptying the colon at a scheduled time. The process involves putting water into the colon through the stoma. This causes the colon to empty.

By repeating this process regularly – once a day or once every second day – you can train your colon to empty without spilling waste in between irrigation. Colostomy irrigation also can help you avoid constipation.

Should you do it? That’s a personal decision. If you are a candidate (see below), your doctor or nurse who is specially trained to help people with colostomies, will discuss this option with you while you are still in the hospital after your surgery.

To qualify for irrigation, you need:

To have an end colostomy that is situated in the power part of your colon and produce semi-solid to solid bowel movements
Good eyesight and dexterity are an advantage as it can be a fiddly process
Time and patience in order to perform the procedure
Permission from your surgeon/stoma nurse

Irrigation isn’t suitable for all. There are some reasons or medical conditions that prevent you from being able to irrigate including those with a large hernia, undergoing certain treatments such as chemotherapy, those with active bowel disease such as Crohn’s or diverticulitis, and those who suffer from heart or renal disease – particularly if you are undergoing dialysis as this could cause fluid overload.

Are you a possible candidate?

Get the OK from your colorectal surgeon and talk to your stoma nurse.

Colostomy irrigation: how?

Anne Marie taught me the process of irrigation at the NSW Stoma Ltd Clinic.
At first, I irrigated every morning. At a later consultation with Anne Marie she suggested I try irrigating every second day. More freedom and success!
There are many YouTube demonstrations and web information sites on this that a patient can access.
It has been a life changer for me:

Colostomy irrigation: why?

Normalised lifestyle
Less embarrassing moments
Train my bowel to evacuate when I want it to
Liberated by lack of output between irrigation days
Freedom
Security
Less appliances
I HAVE CONTROL over my own body

Example of equipment:

After learning how to irrigate I felt I had a bit more control of my life again.

Three months after my operation

I went on a trip to Bali with my family and successfully irrigated while there using potable water.

4 ½ months after my operation

I flew to London for 4 weeks with my mother for son’s University graduation – initially when I was diagnosed and in the early days after the operation, I never thought this would be a possibility. I prepared well and made sure I had enough supplies for both the plane trip on board (just in case) and for the whole holiday. It was a huge success and I am so pleased I had the support to do this.

8 years after my stoma operation

I catch up with family and friends on a regular basis and travel as much as I can
I work part-time at “Story Factory” – a not-for-profit creative writing centre for marginalized young people aged 7 – 17
And finally, I volunteer at NSW Stoma Ltd where I am presently a Director and Chairperson of the Board.

Remember:

Acceptance
Stay positive
Seek and accept support
Be organised
Believe “I can still do it!”

Information for stoma members, family, friends, and carers:

Remember:

They are people just like yourselves
This could be you, your partner, your children, your family, or friend
Think about the initial lack of dignity and your loved one having to come to terms with this early on from diagnosis to treatment
Think about your friend or family member’s self-image. This operation will have a huge impact on how they not only perceive themselves but how they think others will perceive them\
Listen to what they are saying
How can you support and how can they support themselves?

We can all make a difference. Let’s work together and support each other.

Some examples of websites

I personally have found these references helpful but I do not professionally endorse or have any association with any of the organisations (except NSW Stoma Ltd!)

Colostomy Xplained – a free app
Colostomy Xplained – YouTube
Do a search on YouTube: Ostomy or Colostomy
Medicine X to share stories (Robert’s story)
Facebook: Ostomates in Oz (a closed group patients can join for support from other ostomates)
Just google key words e.g. ‘colostomy irrigation’
Ostomingle: Bringing like-minded young ostomates together
And of course: NSW Stoma Ltd