A new study we’ve funded has looked at the experiences of people who have undergone stoma surgery to better understand what support they need. Researchers studied the records of more than a thousand people with Crohn’s undergoing bowel surgery, between 1998 and 2018.
The study found that people who had a permanent stoma formed were more likely to start using an antidepressant after surgery than people who had bowel surgery without stoma formation. This highlights the importance of good communication and psychological support for people who have stoma surgery, which needs to be available before and after surgery to ensure people are well-looked after throughout.
More than one in three people with Crohn’s Disease and a stoma start an antidepressant medication in the 10 years after surgery. It is vital we put structures in place so people living with Crohn’s and stomas have access to psychological services to ensure good mental health.
Many people find that after their stoma surgery, they’re free of the symptoms they had before, and they can start living life again. While rates of anti-depressant use may be higher in this group, it is likely that is largely due to having very severe Crohn’s as well. The research also found that people who already had depression or anxiety, or a history of using antidepressants before surgery, were much more likely to require antidepressants after their stoma was formed.
We know how daunting it can be to adjust to life with Crohn’s or Colitis. For people who have stoma surgery this can be yet another challenge and this study shows how important it is for people to receive support and guidance before and after surgery.
There definitely needs to be more awareness when it comes to the impact that surgery, and even just a diagnosis, can have on someone’s mental health. After my stoma surgery, I had several doctors tell me before I’d even been discharged from hospital that I would struggle mentally – it wasn’t ever an ‘if you struggle’, it was always a ‘you will struggle’. It then took months of me telling them I was struggling for me to get support, even though they’d predicted it so well!
Currently, psychological support before and after surgery is part of the IBD Standards, but we know that people with Crohn’s or Colitis don’t always get to speak to a counsellor or someone who has been through similar experiences.
It’s also hugely helpful for people to be looked after by doctors, nurses, and surgeons who are in conversation with each other to ensure care is joined up throughout. This means conversations about surgery as an option can start early and continue beyond surgery, helping people to know their options and feel supported.
As part of IBD UK we will continue to push for more joined up care to make sure people living with Crohn’s and Colitis who need stoma surgery get the support they need. Soon IBD UK will be releasing a report on the current state of IBD care across the whole of the UK. From this we can see which aspects of IBD care are lacking, and continue to advocate for the needs of those with Crohn’s or Colitis.
Living with a stoma comes with challenges - it’s major surgery and can take some time to get used to. This research is a vital step in ensuring that the right support – both physical and mental - is made available to those who need it. Whilst people with stomas are more likely to start taking anti-depressants, it’s important to remember that stomas can be life-saving and can be a fantastic option for people who are really struggling with Crohn’s or Colitis symptoms.
Mental health is a massive part of any condition but when you are living with something that affects you physically and is visible [such as a stoma] it can play on your mind quite a lot. Coming to terms with the situation you are in is not always easy on your own. It is of paramount importance to speak to people. Friends and family can help but only to a certain extent. Speaking to professionals helped me move forward. I believe this is a vital and integral part of recovery, and living the life you want to live.
Remember, if you’re struggling, you’re not alone - there’s lots of support out there for people with stomas. You can speak to your GP, IBD team, or stoma team about mental health support. Read our ‘Living with a Stoma’ guide, or visit our blog to read some stories from some of our supporters who live with stomas.