Managing one’s daily life with IBD can be challenging at times. The uncertainty that the COVID-19 pandemic has brought has made things even more difficult. Last week for Crohn’s and Colitis Awareness Week, we kicked things off with a fireside chat hosted by three superwomen from the IBD community. The goal of the chat was to discuss the management of one’s IBD, more specifically during these unprecedented times.
Our chat was (virtually) co-hosted by Founder of IBD Passport and IBD Nurse Specialist at the Royal Free Hospital, Kay Greveson, social media influencer and Crohn’s Disease advocate, Rosie Campbell, and author and IBD campaigner, Vera Gomes. Our co-hosts spoke of their own experiences with IBD, sharing advice on how to manage one’s health and wellbeing, especially during the COVID-19 pandemic.
Living with IBD
All of our co-hosts had similar thoughts about living with Crohn’s and colitis; they all appreciated that whilst it can be challenging, by adjusting their outlook, receiving the correct treatment and with support they can rely on, they are able to live fulfilling lives. Rosie shared that planning and adapting are key in her life. Specifically, she gave details about how her stoma bag has improved her life, allowing her to not only do everyday things, but also enabling her to travel the world.
Our co-hosts felt that support from family, friends, colleagues and healthcare workers played a key role in the management of their condition. Kay, who is an IBD nurse, spoke about how it is actually common for nurses within IBD units to also be living with IBD. Kay feels that this makes a significant difference in terms of the understanding and empathy that exists within the work environment.
Vera shared her passion about not letting her disease define her and said that thanks to family, friends and the IBD community, she is able to speak openly about her condition.
“We are not the disease, we are much more than it. The disease does not stop us, only WE are our own show-stopper” – Vera Gomes
Maintaining Your Mental Health
Our co-hosts all shared different ways of maintaining their mental health, varying from apps such as My IBD Care, breathing and mindfulness exercises to Cognitive Behavioural Therapy (CBT) and psychotherapy. Rosie expressed that it’s important to not be afraid to ask for help when you need it and emphasised the importance of practicing positive self-talk. She also mentioned that speaking openly about your condition helps your support network stay in touch with how you’re feeling.
For Vera, maintaining mental resilience involves things like accepting that there will be bad days (and that you have to pick yourself back up) and planning for the worst-case scenario, which she said helps her gain perspective.
Tips on Managing Your IBD During COVID-19
COVID-19 has impacted everyone in one way or another, and our discussion wrapped up with a few practical tips from the speakers about managing their IBD during this unprecedented time.
- Routine is key. Sticking to a routine that works well for your body, mental health and overall life is crucial. Blocking time out for exercise and lunch breaks is even more important now than it was when we had to commute to work.
- Take regular walks and breaks. Not only is the fresh air good for you, but getting outside of the house helps to disconnect from work and provides important structure to your day.
- Get ahead with meds if travelling. Things can be up in the air sometimes, and medication may not always be available when you need it. Be sure to bring extra medication if you’re going on holiday or moving.
- Make a call. We are using online video calling more and more, particularly with work, so to help un-blur the lines between work and life, try calling a friend on the phone instead. Bonus points if you do it while taking a walk outside! Staying connected to loved ones is key.
- Ask for help when you need it. There are going to be good and bad days and that’s completely normal. Check in with yourself regularly and ask for support when you need it. You are not alone, nor should you ever feel alone. At Ampersand Health, we have introduced Life in Lockdown courses on our My IBD Care app. These courses provide tips and tutorials on staying socially connected, active and well and may be a useful place to start for those looking to reduce stress and manage their wellbeing consistently during lockdown.
Find advice, courses and more to support you
The My IBD Care app can help you to self-manage your IBD, during and after COVID-19 lockdowns. You can find courses, advice and tools that make self-management easier.