We’re here to listen and learn and recently asked ostomates to share their personal experiences with us, so we can better support the community.  593 ostomates responded – telling us everything, from the emotional and practical support they’ve received to the obstacles faced – all were incredibly open and honest.

In response to this, we’ve created the Comfort Zone – it’s a place inspired by ostomates and we’ll be filling it with the resources and information the respondents said they’d like to see.

Here’s what ostomates told us

First of all, we asked the respondents to tell us about the circumstances surrounding their surgery. We asked them:

What happened?

• 51% had an ileostomy, 36% a colostomy and 10% a urostomy
• 65% had planned surgery, 35% had an emergency procedure
• Top 3 reasons were bowel cancer (27%), ulcerative colitis (21%) and Crohn’s disease (14%)
• Childbirth, endometriosis, neuromuscular diseases and complications during surgery were also listed as the reason for their stoma

But this was just the beginning and it’s not until you dig a little deeper and hear the respondents tell their stories, in their own words, that you get a real feel for what each one has gone through individually.

“I went into the hospital theatre expecting to have keyhole surgery to remove a lump, and came out of theatre eight hours later with an ileostomy.”

“It was all such a shock. At first I didn’t fully appreciate what having a bag attached to me at all times would be like.” 

“I experienced complete denial that I had to live with a stoma, then followed major self hatred and loathing for my new way of life. Severe depression really took its toll on me.”

How are you feeling?

“I have felt very alone with my condition.”

“I don’t think anyone truly understands the trauma, life changing and life challenging effect having ostomy surgery has on you. The physical wounds are sorted, the mental scars are not.”

“It saved my life, so I’m incredibly grateful to have my stoma.”

“My stoma has given me my life back!”

“I feel fortunate I had brilliant after care and an amazing stoma nurse”

As you can see, there are a wide variety of emotions. We know that ostomates will have experienced many tough moments, but these stories have taught us that while for some there are countless blessings, for others, it has led to frustration, sadness and despair.

Whatever you’ve faced, the message we want to spread to other ostomates is that you’ll get through it with the right support.

“In time, one gets used to the set up.”

“Give yourself time to heal. It comes eventually.”

“You will get to know how it performs and learn how to manage it.”

Everyone’s journey is completely different and the level of preparedness – as well as ongoing access to information and support – directly impacts how an individual adapts following surgery.

• 1 in 5 will only go to their stoma nurse for information and support
• 15% attend patient groups
• 30% are part of an online support group

‘What do you fear?’

50% of respondents said their stoma holds them back from doing things they want to do. 50% say it doesn’t hold them back at all.

• Travelling long distances (57%), swimming (41%) and intimacy (41%) are the things that our respondents told us they were  most uncomfortable with
• 70% said if they were to try something that was outside of their comfort zone, it would cause anxiety. 17% say it causes stomach issues and 12% experience panic attacks
• Worrying about where toilets are, possible blockages, leaks or hernias are also common barriers

The fear of embarrassment and being judged is also felt strongly. We asked the respondents to name something they’d love to do, but feel they can’t.

“Having a relationship, as I find it hard to think anyone would accept me with a stoma.”

“I am always worried in social situations that my bag will start smelling or worse leak. I have nightmares about it.”

“Wearing a bikini too embarrassed.”

The respondents also said what would help them overcome their fears.

“Less attention from others.”

“Support from someone with experience.”

‘What do you want?’ 

80% feel ‘safe and secure’ within their comfort zone and half of the respondents said their stoma – or another health condition – limits what they can do physically.

“It’s just not possible anymore.”

“More understanding from the public is needed.”

The majority (68%) admit the pressure to do things outside their comfort zone often comes from themselves, but 16% say it’s friends and family that put the pressure on and 5% say it’s an employer.

We also asked the respondents to describe how it would make them feel to achieve a goal they really wanted to:

“I would feel a bit more freedom and confidence in my body image.”

“Accomplished, happy, proud of myself.”

“Immense personal pride.”

We’re here to support ostomates,  so we set out to find just what support is needed.

Our respondents told us what was really wanted is a safe space, where you can ask any question, get expert advice and talk to other ostomates.

“A person to talk to who understands and counselling would be a massive support for many like myself who struggle to cope.”

One respondent said:

“I don’t have any fears now. But I did at first. Now I understand it’s because I wasn’t prepared enough.”

Another adds:

“No question’s too silly or embarrassing.”

Whatever your circumstances, the Comfort Zone is somewhere you can feel seen and heard.

This is a place that we hope will bring comfort to you and others, so if you have a story to share, or a question to ask, we’d love to hear from you.