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Damian on Persona Groups

Posted: 04 April 2024

Damian was diagnosed with Crohn’s back in 2011 following the discovery of an abscess in his bowel. At the time he suffered with extreme fatigue and unexplained weight loss, losing two stone in just two weeks. In July 2015, Damian became very ill and ended up spending a week in hospital with extreme leg pain. He was eventually discharged but it was just after Christmas when Damian and his wife knew things were seriously wrong as Damian was in severe pain and experiencing fevers.

A second abscess was found between Damian’s large and small intestine, which was seeping into his abdomen and affecting the muscle in his leg. New Years Eve saw Damian receive emergency surgery to treat sepsis. Due to the severity of his case, Damian woke up with an ileostomy and 2 fistulas on either end of his large bowel.

We have followed Damian’s journey since his first surgery and he has lived a healthy and full life.  We now revisit Damian’s story as he prepares to go from 3 stomas to 1 and the psychological impact of this.

Where are you with your health journey, Damian?

My remaining colon and rectal stump are severely inflamed as they are not being used. The message is loud and clear to me that the longer I leave it, the more issues I will have and the risk of developing something sinister is increased. The best course of action is to remove it and have “Barbie butt” surgery; this will then leave me with just my ileostomy.

What does psychological well-being mean to you?

I never, ever wanted a stoma, which is partly why I let my body get into the state it got to. It was always an option from the medical team, but I never wanted it. I was 33 years old and a dad of two young children when I had my stomas; I thought people would see me differently. I was worried my wife would see me differently and the kids would see me as constantly ill. I wasn’t feeling at my strongest psychologically before my stoma and I ignored how poorly I actually was. Working for 14 hours a day, constantly taking steroids for the pain and fevers, falling asleep on the sofa, and just doing this on repeat; I was simply surviving.

The decision was eventually taken out of my hands with emergency surgery. In some ways, psychologically, this was easier to accept because it was a matter of life or death; I didn’t have to make that brave decision of having a stoma.

Psychological well-being means I can be there for my wife and kids, I can exercise and look after myself. I still have bad days and there have been times in the last 8 years where my wife has noticed I may need to talk to someone and could possibly have PTSD due to all I went through. With my impending surgery, this has reared its head again for me. The thoughts of going into the ICU, seeing drains all over my body, and an intubation down my throat; it’s very scary.

How was your psychological well-being post surgery?

Not good at all. It took me a week to even look down at my stomas and my scars. I couldn’t even bring myself to empty my bag, both the Nurse and my wife had to do this for me for a while. The thoughts of what people would think were constantly on my mind.

How do you ensure you take care of your own psychological well-being?

On my good days, I go to the gym - this helps me massively. I can’t do much, but this is more about having a bit of ‘me time’, a chance to escape and relax for an hour or two. It’s more about my mental well-being than how hard I work.

There are unfortunately so many negatives to living with 3 stomas, however, I wouldn’t be able to do nearly all the things I do now without them. For this, I am thankful for what my stomas have given me. Looking after my own well-being is about walking the dog or going out with my wife on a date night. 

If I’d have known the psychological benefits of having a stoma – I would have had the surgery two or three years earlier, when my body and my mind were in a better state.

When you see the patient personas, which one did you relate to most, at the start of your journey?

At the start of my journey, I was most definitely an “Exhausted” and a “Worrier”. Receiving acceptance and reassurance from loved ones was a big part of helping me move into the next persona. I would say I was still in these personas after surgery and probably for months to come, whilst I recovered. I would say it was going back into work was when I started to move into the “In Charge” persona.

I’ve never been a “Confidential” persona. As soon as I accepted my stomas, I realised this is my life. I tell everybody, I share pictures and work with charities. The more people see stoma bags, the more acceptance there is.

With my impending surgery, the “Worrier” persona is sneaking back in. I’ve had 8 years of living my best life and I’m nervous that this could mean slipping back into more surgeries.

How does Confidence BE® support your psychological well-being?

Confidence BE® doesn’t feel like a medical device, which is a huge support to me. They don’t make that crunching sound like some other bags and they feel like a piece of clothing. The colours allow me to change things up depending on what I’m wearing which gives me confidence and pride in my own appearance. 

What advice would you give to others, to support their own psychological well-being?

I tell everyone about my stomas. I will talk to anyone, and I would encourage everyone who feels comfortable to do the same. Please don’t think you are the only person going through this; research and really try to educate yourself on stomas and what’s out there. Find a local support group and people to share your experiences with.

Social media is really sharing positivity around stomas and surgery in the more recent years: go on there and see what you can find.

Your stoma is probably there to save your life but, it’s not just about being alive it’s about living.

Note: for more information on Salts Healthcare’s research into persona groups amongst those living with a stoma, please see our blog: Introducing Persona Groups (salts.co.uk)