Living with a J-Pouch or Stoma and affect on mental health

A recent mental health survey of J-pouch and ileostomists by the psychologist  Zeina Bushnaq has found that most of those who took part showed higher anxiety levels, bouts of depression and greater body dissatisfaction than the average man- or woman-in-the-street. Despite this most participants reported a generally good quality of life.

The reasons are probably obvious. All the patients in the survey had been through bowel surgery which, as we all know, can be a significant period in our lives. Half of the 152 respondees, or 74, had pouches and an average age of 49 while the other 78 were ileostomists (average age 42).

All came from the RLG and Crohn’s & Colitis UK support groups, the GetYourBellyOut and Purple Wings charities and a number of Facebook and Twitter users.

The survey – which Zeina ran as part of her PhD in counselling psychology at Surrey-based Roehampton University – was particularly timely as the latest statistics show the number of people in the UK with inflammatory bowel disease (IBD) is continuing to rise.

“While the number of people with IBD, ileostomies and ileo pouches has increased over the past few years, research has mainly focused on the physical and medical aspects of these conditions instead of the emotional and psychological aspects. However as IBD diagnoses increase, so do the number of individuals experiencing psychological difficulties, specifically anxiety and depression (low mood),” said Zeina.

Her overview was that the survey’s participants showed high levels of anxiety, low mood (depression) – not mood swings, as that is quite different from low mood/depression – high levels of body image dissatisfaction and held negative attitudes towards mental health services.

However the survey’s aim, she said, was to “help researchers and clinicians better understand people’s emotional and psychological experiences after surgery. This is important because it provides critical information that clinicians need to inform their clinic practices.

“It also means clinicians can make sure people receive the appropriate psychological interventions and that their treatment is tailored to meet people’s emotional needs,” she said.

So what then were the survey’s key findings and what were the main differences between patients with pouches and ileostomists?

“When it came to coping strategies, the only difference that was found was that the pouch group appeared to use problem-focused coping strategies more than the ileostomists,” said Zeina.

“These strategies are used when people try to change the source of their stress and usually take the form of planning or else seeking professional help from doctors or nurses.” She said older participants tended to use these problem-focused strategies more often than younger ones.

Another key factor was the length of time that has passed since the patient has had their surgery. “The further in time from surgery, the more likely participants have time to adjust and cope – and therefore to use problem-focused strategies,” said Zeina.

And what were the recommended types of treatment? “Psychological interventions between the two groups may be different because each group experiences different difficulties, ie individuals with ileostomies may experience short-term complications with their stomas and individuals with ileal pouches may experience long-term complications of the pouch such as pouchitis,” she said. 

“Tailoring psychological interventions may help address people’s specific emotional needs, thus improving their mental wellbeing, whilst also improving access to mental health services,” said Zeina.

The survey is believed to be the first of its kind to examine the differences between a wide range of psychological factors including low mood, anxiety, body image, attention, people’s beliefs, coping, help-seeking and attitudes towards therapy in individuals with ileostomies and ileoanal pouches, said Zeina.

“The results highlighted the importance of understanding people’s attitudes towards mental health services and the need to improve psychological training, healthcare pathways and access to mental health services,” she said.

Patient panel

St Mark’s Hospital has its own Psychological Medicine Unit (PMU) which provides consultation and training to its staff and some specialist input that is mainly for in-patients. Dr Sonya Frearson, consultant clinical psychologist and head of St Mark’s PMU, is currently conducting a needs assessment for St Mark’s Hospital with a view to seeking funding to expand services. 

If the findings of Zeina’s research have prompted you to seek support with ways to improve living with your condition a good first step is to use the following link to refer yourself to your local NHS talking therapies service: https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies/

Or if you are interested in joining a patient panel to help with this treatment then please contact Sonya (using “patient panel” in the subject line) by email to lnwh-tr.psychology.pmu@nhs.net

Zeina Bushnaq: Biography

Zeina Bushnaq is a psychologist and recently completed a doctorate in counselling psychology at the Surrey-based University of Roehampton.

Born and raised in the Middle East, Zeina aims to continue her recent work and research in the IBD community and to help those who face problems or who may be struggling.

She has an MSc degree is social and applied psychology from the University of Kent and a BA in psychology from Canada’s Dalhousie University.

Michelle’s magic formula

RLG communications officer Michelle Martin has her own unique way of dealing with anxiety and stress. We’ll call it PMA –  the positive mental approach

I work for a hospice, so when the UK went into lockdown I was one of the first members of staff to be sent home due to concerns over my health. We entered the lockdown just as I was celebrating one year of living with a pouch and by this point I was really enjoying life without my temporary stoma bag. 

Then I found that after a year of lockdowns I had to regain my confidence in my pouch. I had become so used to being at home near a toilet that I had become nervous of big trips out. 

This situation made me realise two key points:

• There was nothing wrong with my pouch, it was my own anxiety that was holding me back. It was very easy for me to blame my condition but sometimes I needed to look beyond that. 
  
• How important it was to keep active and not retreat to the safety of my own home. It is very easy to stay at home and feel safe but that is not living.

I concluded very quickly that if I stayed at home I would lose touch with my friends, family and the world around me. I also had a spell of Covid and it set me thinking about my mental health. I decided that after being so ill I wasn’t prepared just to sit back. I wanted to live life. 

Living with an autoimmune disease is always challenging but combining that with the worst pandemic in over 100 years just makes things that much more difficult. It is OK to find it stressful but the most important thing is to seek help and support if it is preventing you from living the life you want. You have been through so much you deserve to be happy and to live well.

What a refreshing response, Michelle. It’s an approach that all pouchees – with or without Covid – would do well to follow.

Christopher Browne
ROAR! Editor

A version of this article first appeared in ROAR! If you would like to read other articles like this, why not become a member of the Red Lion Pouch Support group? You will receive printed copy of ROAR! twice a year and have online access to archive ROAR! editions going all the way back to issue number 1, published in 1994.

See pouchsupport.org/join for further information.