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Mental health awareness week | Ostomy edition


Mental health awareness week | Ostomy edition

I couldn’t miss the opportunity to talk about mental health this month, as May 10th-16th is Mental Health Awareness Week

I think it’s completely normal to suffer with your mental health at one time or another. Life seems to have a tendency of throwing in curveballs and derailing plans every so often! A stoma might be one of those curveballs.

Nobody ever expects to end up with a stoma one day. In fact, many people, including me, don’t know what one is until they need one. Certain conditions might mean you’ve heard that it may be a possibility in the future, but just like accidents, you never really expect it to happen to you.

Whether surgery for an ostomy is planned or an emergency, it feels like there’s a lot of adjusting to do once you’re actually faced with it. You have something that you need to consider all of the time. Something you need to take care of. Again, this may be something you feel a little prepared for because you have spent years planning your life around the condition that led to stoma formation. But for others, it’s a totally new way of life!

For me, I was diagnosed with ulcerative colitis and had a stoma less than a week later, so I really did have no understanding at all. I wasn’t offered any professional psychological support either. I really wish I had been when I think back to how much it affected me.

There was a lot involved in my downward spiral, but the major players were body confidence and constant leaks. I ended up not wanting to leave the house because I was so scared of having a leak away from home. I talked about my body confidence issues, and how I overcame them in previous blogs, so do check them out if you’re interested in reading more about my journey.

I would like to move on to some tips for coping when you have mental health issues because of your ostomy. Of course, it will depend on where the issue arose from.

My top tips for dealing with mental health issues that arise because of an ostomy

  • A good support system is key. You need people that you can be open with, without the fear of being judged. This can be made up of a few select people, or a number of different people from different places, such as:
    • your friends and family
    • a group of people who have had similar experiences, whether that’s online or in-person
    • professional support. This could be a stoma nurse or someone who specialises in mental health.
  • Knowing where to find the right resources for things like information, self-help, places you can talk to, or a number to call when you’re in a crisis can be a game-changer. That’s why I recently spent some time collating a list of resources for mental health support. It includes lots of places to talk; via phone, text and email, and links to self-help guides. Plus, how to self-refer for talking therapies such as CBT.
  • Learning as much as possible can make you feel more in control, and more able to deal with all of the little things that having an ostomy might impact in your life. Learning from other people that have lived experience can be useful, and there are a lot of educational resources online which cover many different topics such as lonelinessfoodexercise etc.
  • Make time for yourself every day, do something that you enjoy. For me, getting out into nature helps so much, which is actually the theme of this year’s mental health awareness week! Plus, a short daily yoga session is the closest I can get to mindfulness/meditation! Sometimes I potter around the garden or do cross-stitch. Whatever gives you time to take a breather from the strains of daily life.
  • Advocate for yourself. This one is a little more personal to me because I didn’t realise when I was dealing with constant leaks and burnt skin, that my stoma nurse should have been doing more to help me. I thought it was the norm for everyone with an ostomy because I hadn’t actually spoken to any to tell me any different.

About the advice and opinions of our bloggers

We hope you enjoyed this article from our guest blogger. They are expressing their views or knowledge on a topic because of their experience & background. Some of the opinions expressed may not reflect the views of Fittleworth or your NHS professional.

It goes without saying, but this is not clinical advice. Each person will have an individual set of medical factors to consider. So please do not to make significant changes to your diet, exercise or treatments before consulting with a NHS professional.

Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, Picture of author - Saharaafter just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate. 

Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.

She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.