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Lisa on Persona Groups
From aged 17, Lisa experienced symptoms which were unfortunately not diagnosed as Crohn’s Disease until 10 years later. In 2013, Lisa became extremely unwell with all her inflammatory markers raised which resulted in Lisa having a bowel resection in 2014. Because she had suffered without a diagnosis for so long, Lisa’s bowel had been damaged also causing peri-anal disease. Lisa then had a loop colostomy in 2015 and a proctectomy in 2023 to make everything permanent, along with a total hysterectomy.
Lisa previously worked as a Well-being Service Manager within the Primary Care team at Cheshire CIC. She has since been promoted to the Contracts and Services Manager, overseeing all services provided to patients and their well-being needs. Lisa and her team strive to empower and motivate patients whilst supporting them with their overall health and well-being, so well-being is something Lisa holds as vitally important.
Over the years and to date, Lisa has supported people who are at the start of having a stoma, who can feel very daunted by this. Lisa and the team offer time to those patients and their families and give them a chance to talk.
What does psychological well-being mean to you?
I believe this is all about my mindset and my thought processes, and if I can be positive and pass on my experience to those in the same position as myself, I know I am helping others. I can try and explain to them how I was feeling at the time, of course – I didn’t want a stoma bag, no one does – but it’s getting past that process and all about looking forward.
When you have a long-term health condition, it can be unbearable and sometimes quite sad – but I am living a much better quality of life with my stoma. I can function every single day, just slightly differently. I know that there will always be someone worse off than me, so I shift my mindset to this. I can also see the positive impact my stoma has on my family and friends, and this helps my psychological well-being hugely.
If I knew now what I knew then, I would have wanted my stoma made permanent from day 1.
How do you ensure you take care of your own psychological well-being?
Talking. Talking is key for me, I’ve got a great family network and always have someone to talk to if I need to. In my day-to-day life, and within my role with the NHS, I am an approachable person and an open book.
Having a good cry has also helped since it can be a very frustrating and overwhelming journey. I have a condition that unfortunately slows me down and sometimes I want to be like everyone else. I know now that a good life balance is also important so I don’t over commit to social events anymore; this way I can show up as my best self whenever I do choose to go out. I believe that having my three children earlier on in life was a blessing in disguise - my energy levels were low before my stoma, I simply wouldn’t have coped. I firmly believe things happen for a reason.
When you see the patient personas, which one did you relate to most, at the start of your journey?
When I had my first stoma, I would say I was “Confidential” – I was well and truly shaken. I had anxiety dreams before my surgery, and this is down to such a big change and my struggle to process it. However, I was communicated to so well at this point in my journey so I can’t fault the surgical team. I was in hospital for 11 days, with no motivation to get up or to even look at my stoma, I just felt so tired and unwell but thankfully the Stoma Nurses were very supportive.
I find the patient personas so interesting and can see how it would help Nurses to communicate with their patients at each phase.
How did you move on from this persona?
Once my bowel started to move, I was starting to feel better and start the healing process. I got to grips with my stoma, how it was working for me, and how I could begin to feel comfortable.
Do you feel you moved through the patient personas as time has gone by?
Definitely. Now I would say I feel fully in charge of my stoma and my life. I always know I’ve got the help and support if I need it. When I had my new stoma in 2023, my flat bag was initially leaking and happened on an evening out with my husband. This was really impacting me psychologically and was very upsetting. However, because I have the confidence to speak to my Stoma Care Nurse and explain the problem, she knew that moving me to the Confidence BE® Soft Convex bag would make all the difference – and it did, the leaks stopped instantly.
I am an “In Charge” and proactive patient, so I can check with my Nurse when something doesn’t feel right.
How does Confidence BE® support your psychological well-being?
Because I have used other brands that haven’t suited me, Confidence BE® just gives me the confidence to be able to live a normal life. When I tell people I have a stoma, they say they can’t tell. This is because my bag is so close and comfortable on my skin, it’s just so discreet.
I sleep so well, and I’ve never had an accident with Confidence BE®. If I am struggling to sleep, it’s never my bag that wakes me up, it’s more likely to be my work life or kids!
Has your view of Confidence BE® changed for you over time?
When I had my second stoma, I specifically requested remaining on Confidence BE®. For me, having a stoma is not very sexy but the way Confidence BE® has been designed is fantastic. The material is soft on my skin, not too big and bulky or long. it’s a perfect size. Some stoma bags make a noise when they are squashed or if you move them, Confidence BE® bags don’t do this; they are discreet.
What advice would you give to others, to support their own psychological well-being?
Social media helps me a lot, following all the stoma care companies. I do this as part of my job, but it also benefits me personally to keep up to date. I would encourage people to use any of the well-being apps that suit them and maybe follow some of the patient associations.
Also, talking, making sure you confide in your family, friends, colleagues, or care team. Look after your supporters and carers as this journey can also affect them.
What else could help you with your psychological well-being?
I think the stoma care community is fantastic and can always improve. More face-to-face time with people in the same position as you. Younger people today are happy to share on social media, but older generations don’t particularly want to, so keeping up to date with patient associations and local meetings can be great.
If you could compare Confidence BE® to a brand you love, what would it be?
I absolutely love designer handbags and I would have to say Confidence BE® is the Chanel of stoma bags!
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)
